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General Category => Skin Complaints and Skin Disorders => Topic started by: JD on Thursday January 30, 2003, 07:25:07 PM

Title: Grover's disease
Post by: JD on Thursday January 30, 2003, 07:25:07 PM
Hi,

I'm a 40 year old woman who has had Grover's disease since 1995.  Has anyone had any success treating or controlling this condition?  So far I've tried high dose Vit A (got off it after a couple of months when my hair started falling out), Dovonex, Retin-A.  The last two seem to help somewhat, but I flare badly at least one week a month.  Thanks, JD
Title: Re: Grover's disease
Post by: peterb on Thursday January 30, 2003, 07:42:10 PM
Hi JD

Welcome to the Forum, I have a friend with Grovers, and they use plenty of moisturiser, a general hydro-cortisone cream.  The main thing is also to keep calm as sweating I have been told makes it worse.  Another treatment my friend as had, which a lot of our Psoriasis Sufferer's have had with good results is, PUVA treatment.  You could have a word with your Derm or GP about PUVA.

Maybe a few of our others members can give you some tips.  Nice to meet you, and look forward to your future postings.

I found this for you too.

Quote
Grover's may be suspected by its appearance, but since it has such a characteristic appearance under the microscope a shave skin biopsy is often preformed. Once confirmed, most cases of Grover's disease last six to twelve months (which is why it was originally called "transient"). Unfortunately it may last much longer.

The cause of Grover's is unknown. Sometimes it seems to start up or worsen after exposure to extremes of temperature; other times it appears for no known reason.

Minor outbreaks can be controlled with prescription strength topical cortisone creams. More troubling eruptions usually clear up after taking Accutane or Tetracycline pills for one to three months. If these fail or the outbreak is severe, PUVA phototherapy treatments, antifungal pills and cortisone injections are alternatives.

Title: Re: Grover's disease
Post by: Nick on Thursday January 30, 2003, 08:41:23 PM
Hi there JD :hi:

Firstly welcome to SkinCell ;)


I'm sorry to hear that you have been suffering from monthly flares of Grovers. Many of us here can appreciate how depressing and frustrating it can be when our skin problems seem to keep on coming back to haunt us.

You mentioned that you are using Dovonex ? ? ? I was a bit surprised to see that one being mentioned as I would have expected like Peter says to see a prescription of Tetracycline or possibly an oral retinoid like acitretin or isotretinoin which has been used in tests lately together with lashings of a good moisturiser.

Have you explained to your Derm about the problems with the regular flares? They may be able to make some changes to your treatment to help deal with that, you never know and there's no harm in asking :)



Title: Re: Grover's disease
Post by: JD on Thursday January 30, 2003, 08:50:54 PM
Hi Nick and Peterb,  Thanks for the quick responses.  Nick, I think that retin-a is the same thing as isotretinoin, but I've never heard of acitretin.  I suppose I didn't give you the complete story:  my derm is wonderful in that she understands my priorities:  I'm not going to poison the whole body to deal w/ this dumb rash, so for example, I'm not going to take long term steriods or accutane, and btw, I work out hard 4 - 5 x per week, so much for the sweating thing.  The dovonex was my idea as there have been several articles in the derm publications where people have had success w/ Grover's.  It's very safe, but not so effective for many of us less lucky ones apparently.  Thanks again for your comments!  JD
Title: Re: Grover's disease
Post by: Val on Thursday January 30, 2003, 11:18:44 PM
Hi JD,

Firstly welcome to our forum  ;D we are pleased to have you with us.

I'm afraid that I can't comment on Grover's disease, as I'm not sure what it is, just that it's a skin problem. I have pustular psoriasis, so do understand how frustrating continual outbreaks are. :(

Look forward to getting to know you better, and learning more about your condition.  ;)

Val :hug:
Title: Re: Grover's disease
Post by: Nick on Friday January 31, 2003, 02:21:36 PM
Hi JD,

Good for you for neing so forward thinking ;) :nod:
Judging from your reply you are obviously aware of the possible effects of Accutane which is such a relief. We have other members who have had both success and side effects from it.

I guess that if you workout that much then it's only to be expected that your sweating will aggravate the Grover's. Crikey, what a vicious circle that must be  :(
Title: Re:Grover's disease
Post by: Kip on Sunday February 29, 2004, 02:58:59 PM
Hi everybody,
    I'm a 50 year old male and was just recently diagnosed with Grover's Disease. My dermatologist put me on Soriatane (25 mg), and have been using Calamine lotion and Gold Bond's cream, which offer relief.  The condition appears to be clearing up some, but I will remain on the Soriatane for another 6 weeks.  Will let you know how things go.  Has anyone else been on Soriatane for Grover's?
Title: Re:Grover's disease
Post by: Val on Sunday February 29, 2004, 04:38:05 PM

:hi: Kip,

Not sure if I've welcomed you or not. :-\

If not, then welcome to our SkinCell cyber family. ;D

I don't have Grovers, so can't really be of much help. But I have found some info that may or may not explain a few things about this condition.

http://www.dermnetnz.org/dna.grovers/grovers.html

Hope to see you posting and joining in with us all around the forum :)


Val :hugs:
Title: Re:Grover's disease
Post by: jd1 on Sunday February 29, 2004, 06:08:56 PM
Hi Kip,

I got an email that someone posted, sorry you're stuck w/ Grover's.  Soriatane is for psoriasis, right?  The only Rx I tried that was for psoriasis was Dovonex, it really didn't help much.  Also, the side effects sound a lot like Accutane, is it the same drug?  I've had some success focusing on drugs that treat for sun damage and am fairly certain that I'm not going to take any pills to treat this thing, although I suppose that if one round of pills made it go away forever, I'd have to seriously consider it.  Anyway, please do post back and let me know if the treatment works.  Good luck, JD
Title: Re:Grover's disease
Post by: Kip on Monday March 01, 2004, 01:08:47 AM
Hi JD,
   Thanks for your email.  My doctor is the director of Dermapharmacology at NYU Medical Center and specializes in rare skin disorders. He said he has had success treating Grover's patients with Soriatane, which is a derivative of Accutane and is also used to treat severe psoriasis. I've only been on it a few days, so we'll see what's what in a few weeks.  I've found that Gold Bond Anti-Itch Cream and Calamine Lotion are helpful in relieving the itch somewhat.  I'll keep you posted.
Thanks,
Kip
Title: Re:Grover's disease
Post by: Jimbo on Monday March 01, 2004, 01:24:42 AM
Hi JD,
Welcome to Skin Cell. If you look down through the posts you'll find a quite a few posts on the topic of Grover's Disease. I've had it for 15 years now. I think that we Grover's sufferers should create our own message board somewhere. I'd like to do that, but don't know how.

Jimbo
Title: Re:Grover's disease
Post by: jd1 on Monday March 01, 2004, 02:06:43 AM
Kip, that's encouraging that you have a doc w/ the specialty...  yes, please let us all know.  Has your doc seen permanent clearing w/ Soriatane?  How long is the treatment period?  What's the dosage?  Do you feel any side effects, that's what scares me about Accutane.  Do you know what the difference is between the two?

Jimbo, sorry you've been stuck for 15 yrs, I'm on my 9th.  But actually I was only diagnosed about a year and a half ago.  It didn't bother me so much when I thought is was just allergies.  Now it drives me nuts, in large part because I've spent all this energy trying to make it go away.  Yes, we need our own message board.  This one is good, but it seems hard to find the posts.
Title: Re:Grover's disease
Post by: kneecapper on Monday March 01, 2004, 03:08:47 AM
Hi JD, Kip et al,

I do not have Grover's Disease but I am interested in your comments because it is a disorder of the sweat glands.

JD1, I assume that there is a definite monthly cycle pattern to your flare? The hormonal imbalance needs to be considered as a part of your treatment regime. You are right not to take on any of the more dangerous internal treatments. My skin flared with the tetracyclines and it is not good for women to have that particular drug.

What about products such as Hibiclens because they remove the bacteria from the skin?

Maggie
Title: Re:Grover's disease
Post by: BobC on Monday March 01, 2004, 10:44:31 PM
JD,

Welcome from another with Grover's Disease.

Maggie,

The Ckickweed ointment seems to assist me a little, not as much relief as the calamine / methol / phenol that I am on, but it has provided some relief particularly my scalp.

Regards,

Bob C
Title: Re:Grover's disease
Post by: kneecapper on Monday March 01, 2004, 10:57:45 PM
Bob,

that is encouraging news about the chickweed. It has really helped me and I am very surprised at how much it has helped.

Maggie
Title: Re:Grover's disease
Post by: Kip on Tuesday March 02, 2004, 12:11:45 AM
Hi Everyone,
   In answer to your questions, my doc has put me on 25mg of Soriatane, which I take daily.  For more information on the drug, go to www.soriatane.com.  I don't know of any ill effects, except as to women of child-bearing age.  The website will give you more information . My treatment period thus far is about 6 weeks.  I'm due back to see the doctor on April 12.  I will say that my abdomen and my arms have started clearing up.  Now, whether that's due to just the passage of time, or the drug, or both I don't know.  I'm taking it day by day.  I'm also taking about 2 tablespoons of flaxseed oil a day, and have been moisturizing with Curel lotion, an over-the-counter lotion that my doctor recommended.  I'm supposed to be leaving for vacation to Italy on the 12th, so I'm hoping that I'll be feeling better by then.  I'll keep you posted.
All the best,
Kip
Title: Common Condition
Post by: Jimbo on Wednesday March 03, 2004, 12:40:21 AM
Good luck with that treatment Kip. Let us know how it goes. I went on Accutane for about three months some years ago, but it didn't help at all. It might be worthwhile trying to find among us some common abnormality or disfunction within the body. I personally am not convinced that this is a skin problem only. It may be related to the liver or lungs or some other area of the body as many alternative medicine people contend. Any of you abused your liver or lungs in any way over the course of your lives? For example I used to work in mines when I was young. I know it's a long shot, but might be worth exploring.

Jimbo
Title: Re:Grover's disease
Post by: kneecapper on Wednesday March 03, 2004, 08:30:24 AM
 :hi: Jimbo,

I have just been looking up some information on the web. So far the "experts" have stated that the disease is of unknown cause but there seems to be a link to its occurrence after long term sweating. It seems to be something that affects the sweat glands. If you think that there is an internal cause then you would need to consider whether or not your pores have been blocked as a result of your work in the mines. This is a possibility.

Grover's mimics a few other diseases and it is also possible to have had a dermatitis before getting the Grover's disease, as well as having another skin condition on top of the Grover's Disease. When was the last time that you went to see a dermatologist?

Maggie
Title: Re:Grover's disease
Post by: Nick on Wednesday March 03, 2004, 12:07:00 PM
Yes, we need our own message board.  This one is good, but it seems hard to find the posts.

If you guys can bear with me on that one for a little while longer, I have plans in the pipeline which will resove this issue completely :up:
Title: Re:Grover's disease
Post by: jd1 on Wednesday March 03, 2004, 02:38:54 PM
Jimbo, the common thread I have seen so far among the people I speak with is that it is in areas of repeated sun exposure.  No one I've spoken with has it on the butt.  I think sun trauma triggered something in my body to do this.  And I've had some success w/ drugs that treat sun damage and have become fanatical about protecting my skin from further damage.  I went to Hawaii a couple of years ago.  I had just received the diagnosis and hadn't done any research and on the second to last day saw the thing spread to my shoulders and legs after 8 days of baking in the sun.  I had never flared there before, and it took several months of treatment before they subsided.  The newer stuff seems easier to treat than the older stuff.

As to finding a common thread among us other than skin, I'm pretty healthy, the one weird thing I have is an ANA of a gazillion, but no lupus, thankfully.  Doubt that too many Grover's people have that in common, and my liver and lungs are good.
Title: Re:Grover's disease
Post by: Jimbo on Wednesday March 03, 2004, 08:39:51 PM
I think that most of us are aware that Grover's shows up primarily in caucasian males over 40 with sun damaged skin. That's how I contracted it, lying on the beaches in the south of France for 3 years. However, bear in mind that many people could probably have done what I did and not contracted the disease. I'm guessing that some are more susceptible than others. Why? I thought we might find some common denominators so to speak. I've always thought that my liver and lungs were in good shape, but I've had at least one naturopath say the contrary. Probably nothing, but searching for some commonalities is an avenue that might be worth pursuing.

Jimbo
Title: Re:Grover's disease
Post by: kneecapper on Wednesday March 03, 2004, 09:25:12 PM
Hi Jimbo,

the common denominator might be in the genes or the ancestry of the person. I cannot see that there is any link to the lungs or to the liver with regard to Grovers.

Grover's does come from sun damaged skin, that is very true. It is also something that affects the sweat glands which means that the answer to the problem needs to be found by resarching whether there is a gene or something that is failing to work properly.

To give an example, it has been determined that Darier's Disease is genetic. The faulty gene has been discovered. In this disease there is a breakdown of the calcium pump in the skin. This does not mean that there is a lack of calcium in the body. It causes an outbreak of papules that are warty and crusty in appearance. I had an outbreak on my neck when I was in my teens. In my case I responded to topical Retin-A, and was clear for at least 10 years before the same thing began to happen again.

My guess on the subject is that there might be something in the genes of a person that gets Grover's Disease from sun damaged skin. It would appear that Grover's is very similar to Sebhorreic Dermatitis and it has a very similar pattern in the way that it spreads, such that it is more than likely that just as in Seb Derm there is an overgrowth in come skin cells that cause an outbreak of flare.

I personally do not use a Naturopath for my health since I am not so certain that a naturopath has the necessary depth of knowledge for my skin conditions, let alone the fibromyalgia and other causes of pain. However, I am using some health food shop products, such as the celery seed and juniper because it is a natural herb that also acts as a mild diruetic and that has helped me keep my swelling under control. I guess what I am saying is that I am going with what I know.

Maggie
Title: Re:Grover's disease
Post by: BobC on Thursday March 04, 2004, 01:57:46 AM
jd1, Jimbo, Maggie,

Just watching your messages and gathering my thoughts, JD1 sorry to disappoint you but Grover's attached my "Butt" some of my outbreaks have been in other than the normal Grover's pattern paricularly my scalp, although I do not have much hair also my legs, rather than just being confined to the trunk.

I possibly over exposed myself to the sun when I was younger but in recent years I have been extremely careful, my initial outbreak occurred in May/ June last year during our winter.

Regards,

Bob C
Title: Re:Grover's disease
Post by: jd1 on Thursday March 04, 2004, 02:13:16 AM
Hi Bob, well, I guess you blew my general theory, sorry you got stuck.  The theory really has held up well against the experience of the other people I have spoken with.  Still, after watching mine so carefully, I still feel the couple of bakes in HI did it for me.  Mine so obviously follows the swim suit line, out of all the treatments I have tried has responded best to the sun damage treatments.

Jimbo, I am aware of the general thought that it hits middle aged men, I am a woman and got this when I was 33.
Title: Re:Grover's disease
Post by: kneecapper on Thursday March 04, 2004, 06:31:26 AM
which is interesting because I was burnt to a blistering crisp when I was younger but I do not have Grover's but I do have sebhorreic dermatitis in those same areas. The area that blistered seems to have what can only be described as a form of folliculitis.

Maggie
Title: Re:Grover's disease
Post by: kit on Thursday March 04, 2004, 06:05:04 PM
I have had grovers for about 12 years and mine never went in remission as I was told. I have been to many leading medical facilities in this country and had biopsies read by docs in Sweden as well as here. I have tried everything under the sun both Rx and OTC. I have found the best results using topical chemos such as Efudex and Soloraze. You only have to use a small amount like an eraser size on one area. It seems to work systemically. My grovers was so bad ...it is gone completely when I use these topicals but if I stop--it comes back just as bad. I use them once a day 3 times weekly. Check with your docs. I know others have found relief with these as well. It only makes sense since grovers is from sun damaged skin and these drugs help AK and basal which also are sun damage.
Title: Re:Grover's disease
Post by: Gobe on Thursday March 04, 2004, 09:36:34 PM
 :hi:

Welcome to Skincell Kit!

 :)
Title: Re:Grover's disease
Post by: Jimbo on Thursday March 04, 2004, 11:28:14 PM
I mentioned naturopaths because since traditional medicine didn't offer a solution, I turned to alternative medicine. The main problem with alternative medicine is that it is expensive. It has been a bit of an education and there is a certain amount of overlapping from them with regard to probable causes. They all want to try to cure me, but it usually entails frequent visits, and a lot of prescribed herbs and such from the neighbourhood natural food store. As I said nothing has worked, but it is a holistic approach that may or may not have some validity. We have such a rare disease therefore not much research has been done.  My dermatologist says, œYou've got it for life. She may be right, but howmuch data is she basing that on? I have no doubt that there is a genetic element at work here. I've wondered why they don't take a piece of my skin and study the DNA. Look for some abnormality. My derm told me once that about 70% of skin diseases are classified under GOK. When I asked her what GOK meant, she said God only knows. The skin obviously is too complex for today's science. We may not even have the same specific disease.
Title: Re:Grover's disease
Post by: kneecapper on Friday March 05, 2004, 07:18:51 AM
 :hi: Kit

welcome to Skincell.

Maggie
Title: Re:Grover's disease
Post by: kneecapper on Friday March 05, 2004, 07:34:43 AM
I mentioned naturopaths because since traditional medicine didn?t offer a solution, I turned to alternative medicine. The main problem with alternative medicine is that it is expensive. It has been a bit of an education and there is a certain amount of overlapping from them with regard to probable causes. They all want to try to cure me, but it usually entails frequent visits, and a lot of prescribed herbs and such from the neighbourhood natural food store. As I said nothing has worked, but it is a holistic approach that may or may not have some validity. We have such a rare disease therefore not much research has been done.  My dermatologist says, ?You?ve got it for life.? She may be right, but howmuch data is she basing that on? I have no doubt that there is a genetic element at work here. I?ve wondered why they don?t take a piece of my skin and study the DNA. Look for some abnormality. My derm told me once that about 70% of skin diseases are classified under GOK. When I asked her what GOK meant, she said God only knows. The skin obviously is too complex for today?s science. We may not even have the same specific disease.

Hi Jim,

I understand where you are coming from. I have had a problem with my skin since pre teen years. The derm has stated that I have several skin conditions, but he is not able to take a biopsy for the DD until the crusts come up again  :'(. It seems that the only place I had DD was on my neck, and what once looked like a dirt patch looks scaly. He also said that I have fordyce spots, or sebaceous hyperplasia and I think he even mentioned a touch of psoriasis as well as the prurigo nodularis. For me, the good news is that I can continue to control my conditions in a very easy routine:

1. short warm, not hot showers.
2. no soap.
3. do not scratch  8)
4. use the Novasone (momatasone furoate) twice a day and apply to my back using a sponge applicator.
5. use plenty of moisturiser
6. continue using the chickweed gel (with his full blessing)

There is nothing to be done for the fordyce spots and I certainly will not consider laser surgery for them. It is a sign of my age so no need to fret. He gave me a name of a wart treatment that I can purchase OTC for the plantar warts on my feet, and if that does not work he will post me a prescription for a treatment.

When I am following the routine I do find that my skin settles down and now that we are heading out of the humidity I should do even better because my condition is affected by the humidity.

Like you I have suffered sun damage to my skin. Thankfully I do not have any spots that are melanomas or bcc or scc. I must admit that I do feel a lot of concern because of that time when I blistered so bad on my chest I could not even bend forward. I feel the same way about the spot on my face. However, what has been impressed upon me is that it is my skin that is causing these conditions. I have the kind of skin that does not heal over very well. For example I have a raised nodule that has been on my arm for over 21 years. This came about because I had a fat burn whilst I was at the in-law's place when my MIL was still alive. I have a few other nodules that are the same. They are benign so there is no real reason to worry about them.

Perhaps this is the same with your skin and it could be the reason why it seems as if you cannot get rid of the problem. Has the derm ever commented upon the possibility that you might also have a touch of  *SD ?

Maggie
Title: Re:Grover's disease
Post by: Jimbo on Saturday March 06, 2004, 01:42:46 AM
Hi Maggie,
What is DS?? My Grover's has also been diagnosed as Darier's. I know all the derms seem to agree that Grover's is only skin deep, but as I stated in an earlier post, mine was tolerable for the first 9 years that I had it and then, literally overnight, it got a lot worse. How could the whole torso get worse overnight? I just makes me wonder if there isn't something internal that triggered it.

Jimbo
Title: Re:Grover's disease
Post by: kneecapper on Saturday March 06, 2004, 07:03:59 AM
 :hi: Jimbo,

SD is Sebhorrheic Dermatitis. I have this condition on my torso and I am thankful that this is not Darier's Disease.

I would doubt that your condition is Darier's especially if you have had the skin biopsy that points to Grover's disease.

It seems that the opinion that Grover's is transient might be wrong because the people posting here seem to have had it for quite a long time.

I have seen pictures of Darier's and in its worst state it really looks terrible because of all the crusting from the warts etc.

I honestly do not think that there is an internal connection with Grover's because it seems to hit in an older age group where there has been accumulated skin damage. Also, it seems to affect the sebbaceous glands and that points to something wrong with the makeup of your skin, which might in fact be genetic and has nothing to do with the internal works of the body.

I have gone through the spots on the face, since I was a teenager. I have heard all the advice about eating etc. I have been told to cut down on fatty and spicy food. I have heard the alleged correlation to sugar yet what has probably been most important with regards to that rash is my hormone levels.

I should add here that when I was given the tetracyclines for my skin problem I ended up looking worse than before I started the course of medication. This indicated that some conditions that allegedly clear up with the tetracyclines were contraindicated. From what I have read this is a pointer towards Darier's Disease, but as I said if there is no signs of it at the moment then I cannot have the skin biopsy for the diagnosis.

For the time being I think that you should keep up with the moisturisers and especially moisturisers with Vitamin E and Vitamin A. These should help promote healing of your skin.

Maggie
Title: Re:Grover's disease
Post by: DiGray on Sunday March 14, 2004, 05:46:22 AM
Hello to all you fellow Grover's Disease sufferers! My name is Diane and I have had it since December '98. So much for it being transient!! Am presently in the throes of a huge outbreak after spending 4 days in hospital a week ago. Hadn't had it on my back for over a year and now it is back worse than ever. I have been prescribed Novasone which does help when I use it .. but I hate using it! Would be so happy if I could find some kind of natural cure. Will give Maggie's Chickweed a try when next in town. Other than the Grover's I am a very fit and healthy 48 year old .. once again so much for it affecting men over 50! I live in Tassie so it is nice to hear from all you other Aussies!
Regards
Diane
Title: Re:Grover's disease
Post by: Gobe on Sunday March 14, 2004, 06:03:32 PM
 :hi:

Welcome to Skincell DiGray!

 :)
Title: Re:Grover's disease
Post by: BobC on Monday March 15, 2004, 03:59:13 AM
Diane,

A big welcome from a Melbourne, sufferer of Grover's, have you tried Pintarsel, it has been my most effective relief, combined with a prescribed lotion of calamine/menthol/phenol.

the ckickweed help a little only for me, particularly my scalp.

Regards,

Bob C
Title: Re:Grover's disease
Post by: Mark S. on Monday March 15, 2004, 06:26:18 PM
Hi Folks,

I think I have had this rash - appearing small localized near my sternum, and going down both sides of my chest for 1-2 years. Then this winter, it seemd to explode, on my chest and back.
I had a clinic Doctor diagnose scabies (Not), and bacterial infection (probably). On Followup a week later, another doctor diagnosed folliculitis (not).. So, after 2 -  10 day courses of pennicilin, and 2 courses of acticin for scabies treatment (ARGH), I went to a dermatologist who said, first, I had to use Nizoral shampoo for 2 weeks to clear up the sebborhea  (which did help) so he could do a biopsy. He thought it was Darier's disease. Two weeks later, he did a biopsy.
A week later, he said the biopsy report came back that it was Darier's disease.

HOWEVER! lol, after researching it on the internet, The photos I have seen of Grover's disease much more closely resemble what I have, and I am a male over 50, so I think I fit that category.. And there is no genetic history of Darier's disease in the family...
I did question the dermatologists office about that, but the nurse called back, and said, well, they are both treated similarly.. with accutane...

My question to you all, can a biopsy be misgudged? misread?
Should I be hanging around a Darier's disease forum? LOL...  

Also, does accutane increase the cholesterol levels? can I take accutane, and Lipitor together? (as I am to start taking lipitor anyway for medium high cholesterol - I think i am just over the limit)...

thanks!
Title: Re:Grover's disease
Post by: Gobe on Monday March 15, 2004, 06:50:53 PM
 :hi:

Welcome to Skincell Mark S

You are more than welcome to hang out here with us whatever skin disease you have.

 :)
Title: Re:Grover's disease
Post by: DiGray on Tuesday March 16, 2004, 01:45:56 AM
Thanks for your welcomes ... Bob, has the prescribed calamine/menthol/phenol mixture got a name or is it just something made up by the Doc? Will give Pinetarsal a go as well.

Regards
Diane
Title: Re:Grover's disease
Post by: Jimbo on Tuesday March 16, 2004, 08:32:54 PM
Welcome Newcomers,
Mark I've had Grover's since 1988. One derm diagnosed it as Dariers after taking a biopsy. So you may have either. A second, third?, opinion might be worth your while. I just started with the Chickweed that I had to order from Australia. So far not much change with that. The only natural cream that I've found effective is called PhytoCort and it's made here in Canada I believe. Problem is, it's expensive and in my case needed over such a large area of the body. A 100 ml jar is around $50 CDN. If you know you're going to be sweating, try dousing yourself with a medicated or natural powder before you go out.

Good luck,

Jimbo
Title: Re:Grover's disease
Post by: Mark S. on Wednesday March 17, 2004, 04:07:36 PM
Thanks to Jimbo, and all others who have kindly responded to my post.

I did find a simple, cheap effective back washer at the dollar store to apply the Nizoral shampoo to my back. BUT, what would one use to apply a cream medication or powder to one's back??  Any suggestions? I have no medical insurance. I get help from local free clinics. not employed now. (Have a free internet account from University I used to work at  ...wink)

Also, has anyone ever created an online survey of Grover's sufferer's to try to narrow down the cause? Like, your age, location in the US, diet, do you exercise, do you shower right away after exercise (I used to air dry after a good bike ride, now I feel I should shower or rinse off), when did you first notice the disease, what do you feel is causing it/aggravating it, Do you have any bad teeth (or any other illness) that may be lowering your immune system etc etc etc...?
Title: Re:Grover's disease
Post by: BobC on Thursday March 18, 2004, 03:13:39 AM
Diane,

The lotion that I have been using for about nine months is prescibed by my Dermotologist, it is a  base mixture of calamine lotion with menthol and phenol added to form the lotion.

I am not sure of the quanities as the chemist makes it up for me when I get the script from the Derm. Sorry I cannot be more specific, it really has been the main thing that has worked for me, combined with the Pintarsel and the Predisole tablets I am sought of under control but suffer significant and regular outbreaks.

Regards,

Bob C
Title: Re:Grover's disease
Post by: noomie on Thursday March 18, 2004, 04:28:54 PM
  >:(
Sadly I've had Grovers Disease for about a month.  This insidious rash has just followed a traumatic three months in which I had a heart bypass and two surgeries for cancer.  I think it may have damaged my autoimmune system.  Whatever it is, it sure is no fun.  I have these eruptions all over my body, save for my face and inguanal area.
I have tried prednisone, a host of salves, neurontin, hydroxineHCL, all without success.
I have tried holistic treatment and acupuncture equally unsuccessfully.
The sores either burn or itch,  
My dermatologist is head of Dermatology at Columbia and appears stumped.  He's in Germany right noiw but as soon as he gets back, I'll be on his doorstep.
Title: Re:Grover's disease
Post by: BobC on Friday March 19, 2004, 01:43:02 AM
Noomie,

Welcome, as a fellow Grover's Disease person I do actully know what you are going through, I hope you gain some releif it is no fun at all.

Bob C
Title: Re:Grover's disease
Post by: Jimbo on Tuesday March 23, 2004, 01:06:57 AM
This message is actually for Maggie,
Maggie you claimed to have had good results with chickweed ointment. I ordered some from Australia and have been using it for about a week now without any improvement. Did you find that it helped you right away or did it take a while? Did you find any difference between the ointment and the gel?

Jimbo
Title: Re:Grover's disease
Post by: mic on Tuesday March 23, 2004, 01:41:47 AM
Hey everyone,

Happy to find this sight, but might only add confusion.  I am a single 54 year old Caucasian male diagnosed after 2 biopsies in January with Grovers.  Started in late Oct. with itching on my belly and burning rash on my back.  I am also under a psychiatrist's care for a form of post traumatic stress disorder.  (Psychological/Emotional connection?)  Lived in the sunny south for 27 years and returned to a condo in the cloudy cool midwest two years ago.  

Currently I am getting UV light booth treatments 3 times a week and using the prescribed drugs, Hydroxyzine (50mg - 1 every 5 hours) and Lorazapam (1mg - 2 at night with the hydroxizine).  My dermatologist recommeded Sarna lotion (non-steroid) and BEST OF ALL refrigerated Noxema (I use a white plastic spatula to get to my back).  Also I have found relief with Aveno Propducts for stress relief - moisturizer and body wash.  I have had the outbreaks everywhere on my body below the neck so far including the soles of my feet and genitals.  Sorry for TMI, but somewhere there is an answer to this disease.  I am curious as to any psychological / stress connections with Grovers.  I am a total type A personality and have since the Grovers become very impatient and intollerant at times.  The worst times of the day seem to be the hour before falling asleep at night and the hour after waking in the morning.  Perhaps the changing body/skin temps between waking and sleep are a factor?  I found this web site today and was also told this morning there is no "cure" for Grovers.  Very discouraging.     Mic
Title: Re:Grover's disease
Post by: BobC on Tuesday March 23, 2004, 03:17:11 AM
Mic,

A big welcome to the site, I am in Melbourne Australia.

I also have Grovers Disease, mine was diagnosed in May 2003 via biopsies, with further biopsies in September and November 2003.

Interesting about your other treatment, I have been employed in the emergency services as a manager for 28 years, all of my medical support people (they have been absolutey brilliant) have been down the stress / depression path with me (due to the nature of my work and my profile) but I seem OK and they have not been able to establish a link to Grovers.

I have also picked up a couple of other bugs, urticaria vasculitis, (the itch from this compounds the grovers) helicabactor pylorii and my doctor thinks that I may now have entered a chronic fatigue syndrome type era.

I have mentioned my treatment above, I am also receiving UV light booth treatment twice per week I find this helps, my outbreaks have also not stayed to the routine pattern the worst area have been my chest and back, but my butt, legs, arms, neck and particularly my scalp have all been affected in some way.

I bath in the sea a couple of times a week, it stings like crazy but it also seems to help a bit.

I can relate to the timing that you mention my pattern is very similar, getting to sleep is a problems when the skin feels so itchy and actually feels like its creeping or crauling all over.

I have only been on this site for a couple of months and have found it to be excellent, nowing that there are a few of us with grovers out there helps a bit.

Regards,

Bob C
Title: Re:Grover's disease
Post by: Gobe on Tuesday March 23, 2004, 12:16:18 PM
 :hi:

Welcome to Skincell Mic!


 :)
Title: Re:Grover's disease
Post by: asterisk on Tuesday March 23, 2004, 03:18:02 PM
 :D hi

my name is asterisk and i am a newcomer to this chatroom/

i was diagnosed twice by biopsy for grover's about 2 months ago/

i am prepared to live with this affliction for as long as i have to but am interested in learning about the length of time it lasts/

does the time the disease remains active vary from individual to individual?/

thanks// asterisk :hi:

Title: Re:Grover's disease
Post by: Val on Tuesday March 23, 2004, 03:36:13 PM

:hi: Noomie, Mic & Asterisk,

Welcome to our SkinCell cyber family to you all. ;D

Sorry to hear you all have Grovers Disease :hugs:

I don't know if you've all seen this information but it might be of help to you.

http://www.dermnetnz.org/dna.grovers/grovers.html
 
Hope to see you all joining in with us all around our forum, here is a place where even though we don't all have the same condition, we all understand the problems of having a skin that plays us up. :hug:


Val :hugs:
Title: Re:Grover's disease
Post by: BobC on Tuesday March 23, 2004, 10:46:17 PM
Hi Asterisk,

Welcome to our Grovers world, you are correct it seems to effect individuals differently, lots of good information and links on this site, hang in there, I am sure your medico's will find something that works for you.

Regards,

Bob C
Title: Re:Grover's disease
Post by: peterb on Tuesday March 23, 2004, 11:50:32 PM
 :hi:Noomie, Mic & Asterisk

A warm welcome to the forum.  Good to have you with us, hope you enjoy your stay.

 :)
Title: Re:Grover's disease
Post by: asterisk on Wednesday March 24, 2004, 01:10:48 PM
thanks bobc and peterb for the welcome/
this site is very comforting and being in the company of others with the same affliction gives strength/
one point that is not clear to me is which signs to be aware of when grover's starts to heal/ do the blotches and other manifestations vanish slowly, over a period of weeks and months or does this take just a few days?/

this is the first time i have had this problem and have not been through a full cycle yet/

thanks for your help//
Title: Re:Grover's disease
Post by: Gobe on Wednesday March 24, 2004, 11:47:49 PM
 :hi:

Welcome to Skincell Asterisk!

 :)
Title: Re:Grover's disease
Post by: BobC on Thursday March 25, 2004, 12:21:45 AM
Asterisk,

Not be a medico I can only provide my thoughts, it will depend upon the individual as to how it will heal or go into remission or disappear all together. (I hope it goes away completely in your case).

With myself it slowly started to disappear from different areas of my body, it has never totally gone though, some areas still had the rash which in my case has re-emerged on several occasions.

Your Dermo is the one for the best advice, just by monitoring this site it appears that everyone is a bit different with treatments and duration.

Hang in there and keep asking questions, we may not have the answers but at least others can share their experences with you.

Regards,

Bob C
Title: Re:Grover's disease
Post by: mepen on Thursday March 25, 2004, 12:36:00 AM
I am a 47-year old woman. I've had Grover's at least 6 years, maybe 8 now. I don't know, it's been so long, I've lost count. I've tried steroid creams, Dovonex, topical retinoids, and now I've been on a low dose 10 mg Accutane for about 6 months. No cure in any of them. However, when I discontinue the Accutane for 3 days in a row, I tend to flare, so evidently the Accutane is doing a little something to keep down the Grover's. I have found that milk and dairy products and premenstrual hormones tend to make me flare. I'm sick of it. I wish someone would find a cure! I see a derm at BU (Boston) and last visit she said this is something I may have to put up with for life! How terribly discouraging. Does anyone have any hopeful news? The only thing good I can say is that I made a new friend because of Grover's. Two years ago, JD1 and I became email friends due to this disease!
Title: Re:Grover's disease
Post by: Gobe on Thursday March 25, 2004, 11:33:33 AM
 :hi:

Welcome to Skincell Mepen!

 :)
Title: Re:Grover's disease
Post by: BobC on Friday March 26, 2004, 12:42:05 AM
Mepen,

A big welcome from another with Grover's, like yourself I am looking for the good news.

Bob C
Title: Re:Grover's disease
Post by: mic on Friday March 26, 2004, 06:27:03 PM
Thanks for the welcome everyone!

Appreciate the opportunity to share about this disease and look for whatever common grounds there might be.  Has anyone experienced a flare up after eating or drinking anything?  I have no problem with caffine or alcohol (usual suspects) but I have had some very difficult evenings after consuming decaffinated coffee.  (Maybe the chemical to remove caffine reacts with my meds or the way I experience Grovers).

Other drugs I have used - daily asperine for 10 years.  I had a very difficult time getting on and off of Prozac.  Any connections?

Since Grovers I have had a significant decrease of libido.  Disease or meds could cause that.   The three times a week UV light treatments do seem to suppress the rash.  I also seem to be quite tired, lack of energy.  Again not sure if it is the disease or meds.  (Hydroxizine and Lorazapam.)  Just thought I would throw all this into the mix.
Mic
Title: Re:Grover's disease
Post by: Val on Friday March 26, 2004, 07:59:13 PM

:hi: Mepen,

Welcome to our SkinCell cyber family. ;D

I don't have Grovers so can't answer your questions, sorry. :hug:

I do have a form of psoriasis though and know that like everyone else with it, it's for life. When you first hear those words it really does knock you world from under you. :hug:  But take heart Mepen, it doesn't necessarily mean that things will always be this bad. There are people who find it just goes away at some point, I hope you will be one of them. :cf: :hug:

I'm not sure if you've seen this info or not, but it may help.

http://www.dermnetnz.org/dna.grovers/grovers.html

Hope to see you joining in with us and posting all around our forum. :)


Val :hugs:



Title: Re:Grover's disease
Post by: BobC on Saturday March 27, 2004, 03:16:44 AM
Mic,

Again I can relate to many of the issues you have raised, libido, constantly tired, fatigued and no energy seem to be a part of grovers.

My medico's told me to stay away from asprin type pain releif, paracetomol is ok for me but I used to take asprin for headaches etc, for a number of years and they suggested I give it a miss !

Food and or drink is another area that I have to be very carefull, red wine seems to due something, although I cannot pin it down exactly, Guinnes on the other hand has no side affects on he and I love it !

I am currently eating very bland foods, nothing hot or spicy, no seasonings etc, some of my outbreaks seem to have been agrivated by some food groups or drinks, but it is very hard to isolate them and link them back to grovers.

I have been on a very strick food and drink monitor for three months to try to establish a link to grovers and the vasculitis problem that I have, but there does not appear to be one.

Regards,

Bob C
Title: Re:Grover's disease
Post by: Jimbo on Sunday March 28, 2004, 03:39:43 AM
Hi Bob,
With regard to your post and dietary concerns, you might want to visit a specialist in Chinese medicine. They have a numerous claims as to what is good and what is bad for the skin and skin disorders.

Jimbo
Title: Re:Grover's disease
Post by: mic on Sunday March 28, 2004, 05:50:11 AM
Thanks so very much for your sharing.  I constantly find myself aware of issues that I also want to add to the discussion here.  I have had no adverse reaction to wine or any alcohol, yet I am very aware that one of the times I feel no symtoms of Grovers is after a gin and tonic or glass of wine.  I am very much aware that this could become problematic.  Perhaps the possibility of an  addiction to alcohol is an issue that we need to be aware of.  I also have used many spices and herbs to enhance the flavor of my meals in renet years with no noticable effect on Grovers.

I want to add to all this mix that I have been on Prevacid for the last year and that I lived out of the country in Brazil for several months.  I also regularly add a raw egg to a protein drink and have tried for the last couple years to consume high protein - low carb meals.  I simply want to add all this info in the hope of expanding the issues of commonality.

I am grateful for the anonimity that this site offers and the opportunity it provides to be very frank about the symptoms and struggles with Grovers.  My dermatologist diagnosed Grovers in January after two biopsies, but since I was in Florida at the time, he never discussed the ramifications or consequences of Grovers.  After working professionally with HIV clients I now am confronting my own "life long" disease.

Mic
Title: Re:Grover's disease
Post by: BobC on Monday March 29, 2004, 01:34:50 AM
Jimbo,

Thanks, I have considered a visit to a chinese medico, I have been into alternative medicine for about thirty years, grovers has my momeopothist scratching his head, not as much as me though.

Mic,

Like yourself it is good to be able to chat on this forum and share experinces, and the variety of syptoms and struggles we have with grovers.
Title: Re:Grover's disease
Post by: Jimbo on Tuesday March 30, 2004, 04:01:36 AM
Aside from numerous visits to naturopaths, homeopaths, and the like I've had no success. I tried eating a pound of organic carrots every day for about 6 months. I was thinking in terms of getting large doses of vitamin A that way. No avail. I've tried a 2 week juice fast, a 5 day no food fast. Neither had any effect. I've even tried drinking my own urine. People stare at me in disbelief when they hear that. That was excessive, but I feel like the wolf who will bite off his paw to free himself. I tried having my derm burn the eruptions with liquid nitrogen figuring that new healthy cell growth would repair the Grovers cells. That didn't work. If I could get a skin transplant, I think I'd do it.

Jimbo
Title: Re:Grover's disease
Post by: Gobe on Tuesday March 30, 2004, 12:47:12 PM
If I could get a skin transplant, I think I'd do it.

Jimbo

Wouldn't we all Jimbo!

 :bighug:
Title: Re:Grover's disease
Post by: Hvns on Tuesday March 30, 2004, 02:46:20 PM
 :hi: Welcome to skincell Mepen! I don't suffer from G, so can't answer your questions but am supportive and hope you find your answers  :)
Hvns
Title: Re:Grover's disease
Post by: BobC on Wednesday March 31, 2004, 01:52:15 AM
Jimbo,

I know what you are going through, I have not had grovers anywhere near as long as you, I just hope I don't.

Got a bit of a shock yesterday when I visited my Doctor, in relation to Grovers and the Vasculitis problem I have.

Seems I have had a number of minor heart attacks in the last few days, just back from seeing a cardiologist this morning and go into hospital tomorrow to see what they can do !

Regards,

Bob C
Title: Re:Grover's disease
Post by: Gobe on Wednesday March 31, 2004, 11:52:51 AM
Jimbo,

ISeems I have had a number of minor heart attacks in the last few days, just back from seeing a cardiologist this morning and go into hospital tomorrow to see what they can do !




Oh Bob what a terrible shock for you.  Please update us when you get out of hospital.  Take good care.

 :hugs: :hugs: :hugs:
Title: Re:Grover's disease
Post by: Nick on Wednesday March 31, 2004, 12:47:30 PM
Yes, good luck at the hospital Bob, we'll be thinking of you :bighug:
Title: Re:Grover's disease
Post by: Val on Wednesday March 31, 2004, 03:39:54 PM

Take care Bob, rest up and do what they tell you in hospital. :hug:

Hope you don't have to stay in for too long. We will be thinking about you. :bighug:


:hugs:
Title: Re:Grover's disease
Post by: Jimbo on Thursday April 01, 2004, 03:13:14 AM
Best of luck Bob,
We'll all be thinking about you I'm sure.

Jimbo
Title: Re:Grover's disease
Post by: stuartpierce on Friday April 02, 2004, 11:26:43 PM
Hi, everyone.  I posted about TAD (Grover's) a while back, but I haven't been checking the boards lately.
I've had Grover's for years (never confirmed by biopsy, but that's what my derm thinks).  It doesn't seem to be getting any worse, but it's not getting any better.  Mine is mostly confined to my trunk and chest.
For me, it doesn't itch at all.  It flares up a bit after I shower -- especially if I stay in there too long.
I've tried some topical treatments, but nothing really helps.  If I'm having a flare up, I sometimes put a little pink Caladryl on it.  That seems to calm it better than the prescription steroids I tried, but it will eventually calm down on its own after a few hours, anyway.
I use gentle, moisturizing cleansers -- no scrubs.  I don't use a moisturizer regularly (though I am considering it), but I do spray a little moisturizing (alcohol-free) toner on sometimes.
I am currently taking Beta Carotene everyday.  If this leads to a miraculous recovery, I will certainly post about it.
I did spend years in the sun, and I had a very bad burn in Florida as a child.

Stuart
Title: Re:Grover's disease
Post by: Jimbo on Saturday April 03, 2004, 10:32:13 PM
Hi Stuart,
I ate a pound of carrots a day for 6 months, but it didn't help my condition. That's not to say that it won't help yours so stick with it.

Good luck,

Jimbo
Title: Re:Grover's disease
Post by: mic on Sunday April 04, 2004, 04:12:53 AM
Let me add my best wishes and prayrers, Bob.  

I am curious if there are any on-going Grovers Disease studies at the present that are looking for applicants.  Also am curious with regards to any connections between Grovers and sexual behaviors.  Saw a reference to the possibility in one site, but it was never followed up on.  Thanks, Mic
Title: Re:Grover's disease
Post by: BobC on Sunday April 04, 2004, 11:51:53 PM
Hi all,

Thanks for your thoughts, I am back home and OK, looks like some new medication for my heart problems which looks like it is associated with the euticaria vaculitis.

Grovers has re flared and is currently having a good go at me as well, again thanks for your thoughts it is comforting to know you are there.

Mic, I have not seen anything at all on current Grovers studies, I have been looking.

Regards

Bob C
Title: Re:Grover's disease
Post by: Jimbo on Monday April 05, 2004, 08:52:51 PM
Good to have you back Bob. I don't think we'll find many studies on Grovers. It's so rare. I've often wondered why they can't take a look at a healthy skin cell and compare it to a diseased skin cell. Have they actually isolated the cause of Grovers? Under normal circumstances, my eruptions usually occur in the same places. I'm wondering if it would be somehow possible to rebuild those areas of the skin. If that skin was destroyed somehow, would healthy skin replace it?

Jimbo
Title: Re:Grover's disease
Post by: Sandy on Monday April 05, 2004, 10:01:15 PM
Hi,

I am a 41 yr old female who has just been dx with Grovers! What, why & how!!!! Where did it come from? How does it go away? What am I suppose to do? Stay home out of the sun forever? I love to ride my harley, tan, work in my garden and date! How in the hell do you tell your date....oh, don't mind these read bumps all over me it's just grovers!!!! Someone please help!!! I've seen 8 dr's and needless to say, they say, well at least your alive!!!! Any help would be greatly appreciated!! :'(
Title: Re:Grover's disease
Post by: Gobe on Monday April 05, 2004, 10:05:21 PM
 :hi:

Welcome to Skincell Sandy!

I am sure some of our Grover's disease members will be able to offer some advice.

 :hugs:
Title: Re:Grover's disease
Post by: Sandy on Monday April 05, 2004, 10:10:27 PM
Thanks for your response. I appreciate it and I hope someone can help! Do you know if Dr Grover is still alive? I would like to ask him a few questions?

Sandy
Title: Re:Grover's disease
Post by: Gobe on Monday April 05, 2004, 10:23:40 PM
I have no idea! ;)

Title: Re:Grover's disease
Post by: Sandy on Monday April 05, 2004, 10:41:12 PM
Thanks anyway
Title: Re:Grover's disease
Post by: BobC on Tuesday April 06, 2004, 12:51:54 AM
Sandy,

Welcome from another with Grovers, I am not sure if the Doctor is alive, there is a lot of info on this site and the links, but it would appear that grovers affects us all differently and individualy and being so rare and no real ongoing research means that your derms can only do what they can with the limited info available.

I have done a lot of searching for extra info but hit a brick wall, the members on this site seem to have more personal experinces than any other source that I can locate.

My medical support here in Australia has been absolutley brilliant across the board, but none of them have much in the way of extra info.

Regards

Bobc
Title: Re:Grover's disease
Post by: Sandy on Tuesday April 06, 2004, 04:13:08 PM
Hi Bob

Thanks for the FYI. This is just so unbelievable! They want me to take a 19 day dose of Preginose. But I'm afraid of the side effects. If you get any updates I would love to hear! Thanks again!

Sandy
Title: Re:Grover's disease
Post by: Jimbo on Wednesday April 07, 2004, 02:56:04 AM
Hi Sandy,
Welcome. I've had Grovers for 16 years now. From my experience the medical community doesn't know anything more about the disease than they did 16 years ago. There is no known cure. However, it is transient in most cases. Keep your fingers crossed. You may be one of the lucky ones. In the meantime I suggest you don't expose to sunlight the area of your body with Grovers.

Jimbo
Title: Re:Grover's disease
Post by: Sandy on Wednesday April 07, 2004, 04:26:21 PM
Thanks for the info, but I have decided to just live my life as normal and deal with the rash as it comes. I love the sun and riding my motorcycle! I refuse to surrender to a rash! I have found that the UVB from the tanning beds make the rash flat and not so itchy. My derm said that he had heard that UVB does work sometimes. So thats where I'm at.

Thanks again!

Sandy
Title: Re:Grover's disease
Post by: stuartpierce on Thursday April 08, 2004, 06:46:44 AM
Question for anyone.  Is moisturizer beneficial at all for this condition?

Stuart
Title: Re:Grover's disease
Post by: mic on Thursday April 08, 2004, 02:50:22 PM
Stuart,  I keep a bottle of Noxema in the refrigerator and aply it with a long white ribber kitchen spatula to the places on my back that can itch or ache so badly that I could scream.   The Noxema is BLESSED relief.  I also use the Aveeno Skin moisturizer and body wash - the stress formula.  These can help at times.

Right now I also am aware that a couple gin and tonics before supper in the evening provide several hours of relief.  Obviously that could become a very serious problem in terms of concerns about alcoholism..  My dilemna is whether the judicious use of alcohol is better or less dangerous than use the very strong drugs with side effects that can be harmful to the body.

One other discovery,...shortly after the Grovers blossomed I realized that the foam "waffle pad" on top of my mattress was actually holding in body heat at night and aggravating my discomfort.

Mic
Title: Re:Grover's disease
Post by: BobC on Sunday April 11, 2004, 01:23:27 PM
Stuart,

I have tried a number of moisturiser but have not found one that helps, the calamine lotion presciption that I use has a cooling effect because of the menthol and phenol added.

Mic,

My internal lotion is Guinness in moderation of course, it helps me sleep and breaks the itch cycle, I have not tried it externally though, may be I should.

Regards,

Bob C
Title: Re:Grover's disease
Post by: BobC on Sunday April 11, 2004, 01:30:08 PM
Sandy,

I have been on Predisolone for about six months, it seems to help with keeping my Grovers under some sought of control with limited side effects, we are all different though.

Regards,

Bob C
Title: Re:Grover's disease
Post by: jd1 on Wednesday April 14, 2004, 02:08:14 PM
Hi everyone,

Has anyone tried the suggestions posted by Kit on page 2?  I know her, and her disease has been so bad, and now she knows how to make it go away.  As I posted before, I followed her lead and tried Solaraze on mine.  The rash still bugs me, I am obsessed, but after I dosed it, it was so much better than it used to be.  The lesions are small.  To give you an idea of the size, usually they are too small to biopsy.  I definitely still have this stupid thing - can make it flare w/ hot tub, long hot showers, too much wine or chocolate, a load of stress, pms, the normal stuff, but as I said, it is not nearly as bad as it used to be.

The connection, of course, is sun damage.  If many of agree that it is sun damage related, why wouldn't we try sun damage treatments?  I have not tried Efudex or Carac, but Kit has had wonderful success with Efudex.

One derm insisted that I had to try all her pills before the topicals.  Another completely dismissed the sun damage connection.  A third, wonderful derm was very interested, but he declared that it really wasn't bad enough to treat and that I was so much better than before (he had seen me both pre and post Solaraze slather).  So when I want to experiment with other topicals, I get them from my internist.

If anyone decides to try it, please post back and let us know.
Title: Re:Grover's disease
Post by: kenbkb on Wednesday April 14, 2004, 05:28:49 PM
Hello all,

50 year old male here. I have had Grover's for 4 1/2 years. Diagnosed a couple of years ago visually by a derm, and then confirmed only last month through a biopsy. Have other stuff going on, painful skin around the collarbones and deltoid muscles. Actually wear lycra t shirts hand made for me to ease the pain. Most spots are on the chest and back, occasionally the legs and arms. It's your basic nightmare as you all know. Aggravated in the sun for sure, by exercise, and questionably by foods as well (chocolate?, coffee? spicy foods? tomatos?). I either itch or hurt, one of the two. Found a drug from my neurologist that has really helped with the pain, it's called triliptal (sp?). I'd used the steroid creams for years, they help to a degree.

After 4 1/2 years, my derm and I FINALLY decided to get aggressive, and I am on day number 7 of 40mg accutane daily. No change in the Grover's thus far (actually worse), but I should say I stopped my antihistamines as well, so I will go back on them now. I had two variable changes (stopping the antihistamines and adding the accutane) so that was dumb of me. Anyway, I will let all know if the accutane works at all.

I am certainly interested in what Kit had to say. Has anyone else pursued this remedy? This seems to be the best success story on here, am I correct in that???

Peace to all.

kenbkb
Title: Re:Grover's disease
Post by: jd1 on Wednesday April 14, 2004, 05:48:07 PM
Hi Kenbkb, I think I am the only other one who has pursued Kit's remedy, and my experience is posted right above your post.  Have tried many many things and posted again to try to call everyone's attn to her information.
Title: Re:Grover's disease
Post by: kenbkb on Wednesday April 14, 2004, 07:42:44 PM
jd1, so you are stopping short of the efudex and are satisfied with the Solaraze??

How long have you had Grover's and have you done the cortisone cream accutane route? (Or were you the one fearful of accutane and other meds of this sort?)
Title: Re:Grover's disease
Post by: jd1 on Wednesday April 14, 2004, 08:37:17 PM
I have had Grover's for 8 - 9 years, am scared of Accutane, don't seem to get results w/ the steroid creams (wouldn't want to use them long-term anyway).  

Am not satisfied, have I mentioned that I am obsessed?  Seriously though, I like everything just so, and these little spots don't fit into my plan, you know what I mean?  My husband thinks I am nuts and reminds me how much worse it used to be.  My friends say it is hardly noticeable.  Then again, the last couple of months I've been under tough work stress, and my skin's been bad, not as bad as before, but bad enough to itch constantly and hurt sometimes.  That bugs me - not knowing when it's going to act up again.  A nurse who has treated other Grover's patients with CO2 laser told me that compared to the other 50 or so people that she's treated, my lesions are much smaller, "I have to hunt for them" but there are many more of them.  By the way, CO2 didn't work for me.

The topicals for AKs and skin cancers cause the skin to flare - I think it is the way that they treat the AKs - everything gets really inflammed and then when it heals, you hope the skin is clear.  What I did with Solaraze first was treat my whole trunk as though it was AKs - so twice a day for 20 days I applied it.  The skin started getting a cottage cheese type look to it.  I stopped - was currently going to a derm who wanted to try pills instead - and when my skin went back to normal, the rash was actually gone for a short time. Came back, but as I mentioned, it was different and better.

I've played w/ some other stuff since then, and recently just took Kit's advice to try the Solaraze 3 x per week mixed w/ lotion.  She knows another Grover's person whose derm suggested that treatment.  This month my skin has been ok, and I'm still under tremendous work pressure (which will end soon).  Too much Solaraze causes its own rash, I am using this as a topical anti-inflammatory, which by the way is how diclofenac is generally used and what my pharmacist originally suggested almost a year ago.

Kit had amazing results w/ Solaraze, but she also had some scary side effects.  The Efudex works great for her - she puts on a tiny amout elsewhere, and it seems to work systemically to clear her.  So far, the Solaraze has been pretty benign for me as far as I can tell.  Actually see doc on Mon, I wonder what he'll think of what I've been doing?

But I don't want to make the picture too rosy - if I were satisfied, I probably wouldn't be cruising this website, right?

I am curious to try these drugs, Solaraze, Efudex, Carac, Aldara - not sure which - they are all AK or skin cancer treatments - but try them in the way that they were intended for the AKs or skin cancer.  For example, the Solaraze treatment for AKs is 2 x per day for 2 - 3 months.  Aldara is 3 x per week for some # of weeks, not sure how many.  Would that kill the Grover's cells?  One derm said that was ridiculous.  Another very well regarded derm was quite interested in the idea.  He actually wrote letters to a couple of companies to see if there was safety information about using the drugs over such a large area.  But he watched my skin for a couple of months and declared that it wasn't that bad.

We're just going into summer, and I don't want to deal with the inflammation, so I am postponing further experiments until Oct.  Until then I will continue w/ Solaraze 3 x per week and Retin-A 2 out of 3 nights (my skin can't take it every night).  But in Oct I will try something, maybe even spot treating with a couple different ones to see if any work.  Not sure.  

Your thoughts?
Title: Re:Grover's disease
Post by: kenbkb on Wednesday April 14, 2004, 11:40:11 PM
jd,


I read your response. Thank you for that. I hear you on the obsession, too. I think some people have the ability to let things go, and others won't quit until they have the same skin they had as a baby. Well, maybe not to that extreme. Either way, whatever works for you.

I was confused by several items in your response. I saw you are afraid of ACCUTANE and STEROID CREMES did not work. Let me say that I am on day number 7 or 8 of 40mg ACCUTANE. Side effects so far are a dry nose and I just noticed today my lips are beginning to chap. I think I'l start skipping a day or two here and there to give my skin a chance to absorb this heavy duty medication. By the way, my derm did tell me that for acne, ACCUTANE is just about 100% effective.

I understand, too, about the spots not fitting into your plan. Mine either. But let's share our knowledge to help each other keep our plans intact. I did read somewhere, jd, that it doesn't depend at all on the SIZE OF THE GROVER'S SPOTS, the smaller ones, although less obvious, can itch as bad or worse than the more noticeable.

You lost me on "AK's"?? You mention it in the same sentence as SKIN CANCERS so this must be a general term for a skin problem or lesion? It seems from your one paragraph that the Solareze worked with the twice a day for 20 days, albeit with the "cottage-cheese" look. Maybe once a day might have been far better? Regardless, you did state you improved. You mentioned your doc wanted to go to pills instead. Was that a SOLARAZE pill?

Diclofenac, eh? That's another new one for me.

What were Kit's scary side effects on SOLAREZE??

I appreciate your sharing all that. I am going to do some searching in the next couple of days on the SOLARAZE, EFUDEX, CARAC and ALDARA. I'll let you know what I discover. I'll get a friend who has a knack for digging things out to help.

Last question I have for you. So the SOLAREZE causes actual inflammation (I saw your comment about not wanting to deal with inflammation during the summer)?

Here is a link for you, I am sorry I have little else to offer. All I can report on...for now, is the success or failure of the ACCUTANE. Anywho, here are some doctors in an online forum discussing Grover's treatments in an online forum...

Regards,
kenbkb

http://dermatology.cdlib.org/rxderm-archives/grovers
Title: Re:Grover's disease
Post by: BobC on Thursday April 15, 2004, 03:34:07 AM
kenbkb, jd1,

I have been watching your discussions and am a bit confused by some of the term but I get the drift of what you have been talking about, I am currently in the middle of another significant Grover's outbreak, chest, shoulders, upper and lower back, thighs and forarms.

Can you tell me more about solareze, efudex carac, aldara, are they a prescribed items or available over the counter from a pharmacy, I will be seeing my derm late next week and I would like to discuss other options with him.

The Predislone tablets seem to assist me, along with the lotion that I have previously mentioned, but it keeps re-occurring far to regularly.

My compounding condition, urticaria vasculitis may limit my experimentation with other products but I would like to discuss it with my derm, doctor and the professor who are looking after me.

I will keep an eye on your posts,

Regards,

Bob C
Title: Re:Grover's disease
Post by: jd1 on Thursday April 15, 2004, 02:51:07 PM
Hi all,

I am aware that the size of the Grover's spots doesn't affect the discomfort.  But if you had a choice of having huge lesions or small spots, which would you prefer?  I can wear t shirts that I haven't worn for a couple of years.

My first derm wanted me to try Tetracycline, then Sporonox, then Accutane before messing with the topicals.  She was talking about for life.  Big time not ok with me.  

Diclofenac is the drug name for Solaraze.  It is in pill form, but I can't remember the name right now.   I don't want to dose my whole body inside to treat a skin problem outside.  Also, it can be tough on the stomach, same as aspirin etc.

All of the topicals that I know of that treat AKs and skin cancer cause inflammation.  My understanding is that that is how the condition is cleared - it reacts with the drug.  See if you can find some pics of Efudex, I think that is the one that hurts worst of all.  But apparently the clearing after is really amazing.

Re the Solaraze, 3 x per week is about as much as I can use it without it causing its own rash.  So there I am using it as a topical anti-inflammatory.  But again, I don't think anyone has tried inflamming the lesions with these drugs to see if the drugs will clear them.  I don't want to candy coat it - there are safety issues with using so much.  AKs are abnormal skin cells that can turn cancerous - I'm blanking out on the real name.  In any case, they are small, as are skin cancers.  Here, I am talking about treating large areas.  That's also why at this time I am most interested in Solaraze, it seems less serious of a drug that Efudex, which as I understand it is a topical form of a drug that they use for chemo.  

Aldara recently received FDA approval for one type of skin cancer.  It works by calling immune system action to the diseased cells so that the immune system finally destroys the diseased cells.  I actually tried that one once, my doc forgot to tell me to use the tiniest amount, and I looked like I had chicken pox the next day.  Hurt like heck, took a couple of weeks to heal.  Anyway, a couple of people have told me that there is an autoimmune component to Grover's, and I don't understand that part of the disease, and so I am nervous about messing with a drug that messes with the immune system.  

All of these drugs are prescription, and Bob, I'll bet your derm thinks I'm nuts.  But I think that all of these are easier on the body than a lifetime regime of powerful pills.  The thing is, I've done a lot of reading and tried a lot of stuff, and this is what has worked best of all, by far.  It seems clear to me that my disease is sun trauma related, and I don't understand why the docs don't look to sun damage treatments for remedy.
Title: Re:Grover's disease
Post by: kenbkb on Thursday April 15, 2004, 05:54:04 PM
jd,

interesting that a topical drug spread on a small area can heal a larger area. am i reading this correctly from you??? my assumption as a layperson would have been that only an internal drug could have that efficacy.

i have not heard of sporanox, appreciate the feedback. you are a major source of information re: grover's meds.

one question i might have is that on your 3x a week on solaraze, is there a point where, optimally or hopefully, it is supposed to be efficacious and you can cut back or ease off on the topical drug? of course this would be what we would want but do you get that read from using this that this is what is supposed to occur?

it seems as if also there is a general comfort or discomfort level with individuals as to whether they want to use the topicals or internal meds. i can report so far on my 8th day of 40mg of accutane a slight improvement. i am still getting some spots but some of the older ones are fading. way too early to forecast but i will continue to give updates. i am a bit encouraged. i am getting slightly chapped lips and my face is somewhat drier at this point so i am skipping a day here but will pick it up on day 10 for my 9th accutane.
Title: Re:Grover's disease
Post by: jd1 on Thursday April 15, 2004, 06:25:03 PM
Ken, have good friend who is also using Accutane.  I hope it works for you.  Sporonox was idea of first derm, another friend's derm said that was insane, and my internist was not happy w/ the idea - I guess it's tough on the liver.  If I remember correctly, the idea there is that there is a fungus infection element to the rash?  Not sure if I'm remembering that correctly.

I don't think at 3 x per week Solaraze will ever make Grover's go away - I think it is part of controlling the flare.  There isn't any idea of what's supposed to occur - this is an off label use of Solaraze.  That is why I am curious to try the AK treatments - test a small area, cause the reaction, see if then the Grover's will go away.  Not hopeful, but wouldn't want to miss a "cure" if it were there.  I don't get the systemic benefit from these drugs, Kit does.  Hopefully she will weigh in with her experience and information.  Glad you find the information interesting, I've been talking and researching and brainstorming w/ Kit and w/ Mepen and our docs for over a year now and again, this is the best we've found so far.  And there's been improvement.
Title: Re:Grover's disease
Post by: Jimbo on Thursday April 15, 2004, 11:17:35 PM
Hi All,
I tried Accutane a few years ago. Took it for 3 months. Dealt with side effects like dry skin and flushed face during the whole time. It didn't help at all, but I've read on the internet of other derms having some success treating Grovers with it. There's a new drug on the market here in Canada called Protopic. It's actually meant for eczema, but my derm wants me to try it. Not holding my breath, I've tried eczema drugs before and they've actually made my skin worse. I'll let you all know how this goes.

Jimbo
Title: Re:Grover's disease
Post by: kit on Friday April 16, 2004, 01:14:13 AM
Hello

I am glad to see there is some interest in the post I left about Efudex. As JD said I have had really promising results with the use of AK, basal cell topicals. The link for me is definitley  sun damage. I have had Grover's for many years now and nothing helped me at all. I use very small amounts and about 3 times a week on small areas. I seem to get result systemically. one of my derms and one derm surgeon finds this promising and is using it on other patients.  You can ask your doctors and see what they think. One thing for sure--is if I stop  using the creams it comes back so for me it is not a cure. Has any one tried Aldara?

Kit
Title: Re:Grover's disease
Post by: kit on Friday April 16, 2004, 01:37:58 AM
AK is actinic keratosis . My  side effects from Soloraze were terrible as I was overdosed by my dem by quite a bit. It took me months to recover. Solaraze is a great drug if used properly. That derm was fired!!! I believe that there are different forms of Grover's and that explains why some peolpe do so well with some drugs while others do not. For me the Ak topical creams have been a great relief and when I use them you would never know I had grover's.  I had found that by accident as I was being treated for basal cell and squamous cell  and noticed when I used the creams the grovers went away. I was applying the creams to my face and neck and the grovers on my back, stomach, upper arms and upper legs were getting benefit. It was strange but something that my derms could not deny. Good thing is that others have had benefit from this therapy too. It is an avenue to discuss with your derms. I hope this helps someone.
Title: Re:Grover's disease
Post by: Coriander on Friday April 16, 2004, 09:31:20 PM
Hi,
I was just diagnosed w/ Grover's through a biopsy a few weeks ago, after having had my first outbreak in late Jan.  (I'm a 47 yr old female.)   I keep jokingly referring to it as "Old white man's disease", but of course there's nothing funny about it - although I must say my case seems pretty minor compared to the rest of you.  I'm hoping I'll be one of the lucky ones, in whom it really is transient....

Here's my history, for those trying to find the links:

I'm fair skinned, have apparently had more sun damage than I thought (although no particularly serious burns), since I've had both a squamous cell and basal cell carcinoma treated in the last few years.  (Basal on face, squamous on arm.)  I have a genetic marker for lupus (and have first cousins w/ Rheumatoid arthritis and fibrocystic disease, which are all apparently linked) but do not have the disease.  Am basically pretty healthy, with a good immune system.  Definitely a Type A, though, and have been taking SSRI's for about 5 years now.  When I first had the outbreak in January (and my back itched for a day or two before I happened to see it in the mirror and freak out!) I did remember having worn a sweater that was a little too binding, and getting too hot in it.   (Hardly an action worthy of this kind of punishment!)  Anyway, I have had a history of heat rashes and also getting odd red itchy bumps on my limbs and trunk when I go to the beach, but that's about it.  I also live in the south and sweat more than many women, so I am really worried about how I am going to maintain an acre yard, walk my dog, and the other outdoor things that involve southern humidity and sweat.  Am also very interested in the possible connections between alcohol, chocolate, caffeine, dairy, spicy foods, and Grover's (although I must say doctors love to tell us that these, my favorite things, cause EVERYTHING).   The only other thing that's odd about me is that I have problems with joint pain that, oddly enough, are worse in warm weather than cold.  (A doctor once told me that they could be allergy-related, but none of my research in that area has resulted in anything of consequence.)  My mother does have fibromyalgia, though.  And I get lots of other little skin oddities, like keratoses all over the place, and skin tags....I have enough tubes of ointments to start a pharmacy in my medicine cabinet, and I don't even know what most of them are for anymore (since few of them seem to do anything anyway!)  Also, I have had very dry skin my entire adult life - in fact I can barely stand to be in heated buildings, between the eye, nose, lip, and facial dryness....I almost become dysfunctionally ill.  What is comfortable to most people feels to me like I'm dry-roasting, and am going to form a crust all over.  Most lotions go on my skin and are immediately sucked up like water on a sponge...

sorry for the long intro, it's friday afternoon and I'm too tired to edit better!  good to find this forum, though

Cori

Title: Re:Grover's disease
Post by: Sandy on Friday April 16, 2004, 10:26:36 PM
Hi Cori

I was dx a fews ago with this grover's thing! I'm 41 and a white female. For the last few yrs when I lay at the beach I also get these weird blochy things on my body. But thank god I have had no skin cancer or any other disease. I am a type A person also. I live in SO Calif. I have been tanning in tanning beds for about 20 yrs. But I have found that if the tanning bed hasn't been used to much that day and it's not that hot it acutally HELPS!!!! Most of my rash is on my lower abdominal area and upper back. If I'm in a bikini people think I have the measles! But after listening to all these stupid drs. (by the why, I work in the medical field) I will not take the preg. and I have resolved to just live with it and live my life. I have way to much going on to worry about these stupid bumps. When I date, I just tell the guy that it's a stress rash! I have found that the more stressed I am the worse it is. So anyway, I need to get back to work, I just want to to say good luck!
Title: Re:Grover's disease
Post by: kit on Friday April 16, 2004, 11:03:10 PM
Sandy--

Great attitude! I like it

Kit
Title: Re:Grover's disease
Post by: Sandy on Friday April 16, 2004, 11:09:57 PM
Hey Kit,

You know life is way to short to sweat (no pun intented) the small stuff! Thank god it's not life threating!

Have a great weekend!
Title: Re:Grover's disease
Post by: kit on Friday April 16, 2004, 11:15:19 PM
Hi Cori

You seem to have the same symptoms that I have even our mothers have the same disease. I am 47 blonde and blue eyed and type A as well. Unfortunatlay I lived in Ft Lauderdale for 30 years and totally over exposed myself to sun. I have for the last 14 years or so been treated for AK, basal and squamous cell. I was wondering if you have ever been treated with Soloraze, Carac or Efudex for your Ak or basal? If so did you notice any benefit to your Grover's?   These topicals have been miracle workers for me. I have tried most of the diets and just about all the other things the docs suggest from pills to creams to lasers--you name it and my Grover's laughed at all of it. To be honest I had given up most hope of anything working for me as I have had it for so many years now. Obviuolsy mine was not going into remission as promised in 5 to 8 years either. So I was wondering if you had tried those chemo topicals at all?
Title: Re:Grover's disease
Post by: kit on Friday April 16, 2004, 11:17:09 PM
Sandy--

Thanks --you have a great weekend too--with your attidue I am sure you will!!
Title: Re:Grover's disease
Post by: BobC on Saturday April 17, 2004, 06:17:01 AM
Hi all,

Thanks for the ongoing info and upates, I will have some further discussions with my Dermo this week when I see him to see if we can agree on trying something different for me.

As a point of interest has anyone been diagnosed with Systemic Urticaria Vasculitis, the initial biop's confirmed Grovers Disease, but a couple of months later a different rash altogether appeared with the Grover's (different locations though) that was confirm as SUV via biop's, this has significant internal effects, including most organs and is linked to the imune system.

Any thoughts comments appreciated.

regards,

Bob C
Title: Re:Grover's disease
Post by: MMS on Saturday April 17, 2004, 04:20:47 PM
HI,
I am new to this forum.  I have had Grover's for 8 years.  It has remained dormant for up to 10 months.  I am 55 and still having hot flashes  which of course has made my Grovers miserable.
I just started a new breakout about a month ago - this time on my hand, wrist under my watch (were I sweat) and I on my scalp on the back of my head!  Has anyone ever had it here. My first flare up was unbelievable I had it all over my entire body.  The dermatologist at the University said it was the worst case she had ever seen.  Fortunatly it does not flare up all over, but the spots are incredibly itchy.  I don't know what to do a about the scalp, I sweat a lot from my head.
I have immune disorder - Hashimoto thyroid and I am on treatment for that.  I have not had full success with any one treatment of ointments.  I tried Ocutane withthe first flare up and it seemed to help a bit.  From reading the posts it does seem like the immune system is involved in a number of people.  I have had three biopsies and they all came back with Grovers.  I have other
itching on my body without rash, but just intense itching.  Thanks for listening.  I am glad I am not alone!  MMS
Title: Re:Grover's disease
Post by: kenbkb on Sunday April 18, 2004, 02:03:58 AM
Hi all,

From what I am reading here these past couple of days, it is appearing that, with moderation, and with a dose befitting your body's tolerance, these skin cancer meds seem to be providing the most benefit. Still baffled that they act like a systemic drug throughout the body for the Grover's. That's not a complaint though, mind you!

I am on day number 10 of 40mg accutane, have had to back off and do every other day these past four days. The drying out affects are unreal. But it does seem to provide a degree of benefit...thus far. Although I am still getting new spots and itching, it seems like the "older stuff" is getting "taken out". A pharmacist I spoke with talked about the Accutane restoring some of the "balance" to the affected skin. I am going to call the drugmaker directly for a little more of the "skinny" and will post that.

I have a follow up with my derm here in Chicago in two weeks, and will bring up the subject of the potions for skin cancer that seem to provide benefit. Will also mention that new drug brought up here from Canada. Thanks, all!!

Ken
Title: Re:Grover's disease
Post by: jd1 on Sunday April 18, 2004, 02:51:42 AM
Cori, your comments re Lupus made me take notice.  A couple of years ago I went through a bunch of blood tests.  This rash hadn't been diagnosed, and between it an my ANA of three million (ok, a little exaggeration, but you get my drift) Lupus was a real possibility.

Sandy, if it were me, I wouldn't be exposing it to tanning booths.  Based upon a couple of years of watching my skin, I think you're trading short-term relief for a more established rash that is going to be harder to treat.  Mine spread to my legs last time I went to HI.  Right away I started researching and made the sun damage connection and really started taking care of my skin.  The stuff on my legs is so much easier to control than the older, more established rash that has been assaulted and reassaulted with the sun.   Just food for thought.
Title: Re:Grover's disease
Post by: easy44 on Sunday April 18, 2004, 02:58:47 AM
Hi, I'm new to this forum and was diagnosed with Grover's about 12 years ago.  The first episode was severe and took close to a year to go away.  Since then it has flared up periodically, but not with the same intensity.  I get very severe itching that just about drives me crazy.

About a week ago I had another flare that was pretty intense, so I decided to try something I had thought about before but never did.  I have always been struck by the similarities between the symptoms of Grovers and herpes, which I also have.  The rash, blisters, itching and pain, the periodic flareups etc., so I started taking Valtrex (valacyclovir) for the Grovers.  The first dose of 500mg. provided some relief from the itching about 1 to 1 1/2 hours after taking it.  After some trial and error to find the optimum time between doses, I found I had to take 500mg. every 4 hours to keep the itching to a minimum.  This is higher than what is required for herpes (500 mg twice a day), but Valtrex, from what the instructions say, is a fairly non-toxic drug, and I didn't have any side effects.  I was also applying a topical steroid type anti-itch medicine as well as periodic ice packs to the affected areas.  After about 5 days on this schedule the symptoms were completely gone, no rash or itching.  I'm not sure if this was a result of the medication or just a coincidence, but I would be interested in finding out if anyone else had tried this, or would like to try it to see what happens.
Title: Re:Grover's disease
Post by: BobC on Sunday April 18, 2004, 04:31:11 AM
MMS, Easy44

Welcome to the forum,

MMS,

Some interesting issues that you have mentioned, particularly the scalp, (I am not sure that many people suffer it within the scalp) this is one area were my derm actually thought the grover's disease was not the problem that has been driving me crazy with the itch, (He confirm it via Biopsi) it seems to be the one location that I have had very little if any significant relief, as he explained to me the blood vessels and other things are very close to the skin in the scalp area.

A product available here in Australia (Pintarsol) is about the only thing that has provided relief in the area of my scalp and other hair related areas. I have mentioned this and another lotion that is prescibed for me based on calamine lotion in other postes on this site.

Likewise an area that drove me mad with the itch was under my rings on each hand, I have not warn them for about twelve months, when I did manage to get them back on I only lasted a day or so before my fingers started to itch and swell, so they off indefinetly now.

Easy44,

I have never heard of any simalies with Herpes or the treatments but it would appear that we all reacted differently and suffer differently so good luck with your experiment, if it works for you all the better.
Regards

Bob C
Both only provide some relief though not a cure !

Title: Re:Grover's disease
Post by: MMS on Sunday April 18, 2004, 05:53:05 PM
Hi,
Easy44.  Just to let you know I have been taking Valtrex for over a year on a daily basis due to a high
level of antibodies in my system, my doctor feels it will help with this problem.  It has not stopped my Grover's from flaring up - I take 1GR twice daily.  I am glad it is working for you but it has not done anything for my Grovers.


Hi, I'm new to this forum and was diagnosed with Grover's about 12 years ago.  The first episode was severe and took close to a year to go away.  Since then it has flared up periodically, but not with the same intensity.  I get very severe itching that just about drives me crazy.

About a week ago I had another flare that was pretty intense, so I decided to try something I had thought about before but never did.  I have always been struck by the similarities between the symptoms of Grovers and herpes, which I also have.  The rash, blisters, itching and pain, the periodic flareups etc., so I started taking Valtrex (valacyclovir) for the Grovers.  The first dose of 500mg. provided some relief from the itching about 1 to 1 1/2 hours after taking it.  After some trial and error to find the optimum time between doses, I found I had to take 500mg. every 4 hours to keep the itching to a minimum.  This is higher than what is required for herpes (500 mg twice a day), but Valtrex, from what the instructions say, is a fairly non-toxic drug, and I didn't have any side effects.  I was also applying a topical steroid type anti-itch medicine as well as periodic ice packs to the affected areas.  After about 5 days on this schedule the symptoms were completely gone, no rash or itching.  I'm not sure if this was a result of the medication or just a coincidence, but I would be interested in finding out if anyone else had tried this, or would like to try it to see what happens.
Title: Re:Grover's disease
Post by: Coriander on Monday April 19, 2004, 02:03:18 AM
Hi Kit,
yup, I'm blonde and blue-eyed too.  Lived on the coast of Florida for 3 yrs as a child and apparently that early sun damage might be my main problem, even though, fair as I am, I do tan pretty well - I'm not one of those fair people who just splotches red when exposed to the sun.

I've been lucky - I've only had one basal cell and one squamous so far, and both had to be removed surgically.  However, I do use Solaraze on my face - usually for a few weeks at a time, then I stop for awhile until I can feel roughness coming back (this is always on my forehead.)  I've had quite a few things frozen off, too, it's just par for the course when I go to the dermatologist.  

I mentioned that many Grover's patients were using Solaraze to my derm and she looked shocked and told me all the reasons why it wasn't appropriate.  (Not that it would be harmful, just ineffective.)  I suspect that she has few if any other Grover's patients; fortunately, mine was fairly light to begin with and seems to be somewhat in remission, so for the moment I'll stick with her.  In addition to strong cortisone creams, which I used initially to tone it down, she prescribed Elidel, which is a new medication for eczema, I think.  I can't really speak to its effectiveness, since my case is so mild anyway.  I use a little every couple of days, but have been seeing how things go without using much of anything.  So far so good, although I should be sweating up a storm tomorrow doing intense yardwork, so this will be the true test!  

jd1, I underwent a series of kidney tests about 10 years ago that pointed out the lupus marker, but I was told that that didn't in any way mean that I would necessarily get it - just that I COULD whereas people without that "tag" were very unlikely.  Although it can be caused by environmental agents as well (I have a friend who grew up in a barrio in NM and a horrific percentage of all residents, including her, ended up w/ systematic lupus due to toxins in the drinking water.)

cori

Has anyone else been prescribed Elidel?
Title: Re:Grover's disease
Post by: kenbkb on Monday April 19, 2004, 06:09:24 PM
coriander, i used eladil a few years ago, was told it was the latest and greatest, didn't do a thing, for me, however. doesn't mean it won't for you.

how about any of you other accutane users? how has that gone for you?

i am on day number 11, again, it seems to help, but the drying affects are significant. may ask my derm at my appt in a couple weeks if knocking it down to 10 or 20mg/day from 40 would be advisable.

Ken
Title: Re:Grover's disease
Post by: peterb on Monday April 19, 2004, 06:15:59 PM
 :hi:easy44

A warm welcome to skincell.

 :)
Title: Re:Grover's disease
Post by: Bill 3 on Friday April 23, 2004, 06:20:55 PM
Hi fellow Grovers.

I do a word search every few months for Grovers, and
this site poped up.

I am sun loving south florida boy ( in the 50s ) coping
with this Grovers/Leper thing.

I was biopsy diagnosed Grovers  ten years ago. Mine is
mostly on the trunk.

I have not tried oral meds, but have tried a half a dozen
creams, half prescription, half over the counter. None seemed
to help, a few lit me up.

I do not want to stir any false hope, as there never seems
to be any, but I thought I would pass along my experiment
of this week.  I picked up two new ( for me ) over the counter
things, (1) a Eckerds anti itch cream with some kind of hydro-
cortozone derivative, and ( 2) "Aveeno", an anti itch calamine
based cream ( $8 ).

I tried one to a side, for a few days. the eckerds side got
progressively worse, while the Aveeno side got better.
I changed both sides to the Aveeno for about three days
now, and am 90% clear, whitch is a bit unusual for me.  

I doubt  it will continue, but thought I should mention it.
I note some other reference to some relief from a calamine
lotion, but did not note anyone saying it helped or made
no difference.

Bill 3  
Title: Re:Grover's disease
Post by: jd1 on Friday April 23, 2004, 06:33:08 PM
Hi Bob, Please keep in touch with this experiment.  90% clear on someone whose been dealing with this crap for 10 years is clearly significant!  Best wishes, JD
Title: Re:Grover's disease
Post by: jd1 on Friday April 23, 2004, 06:34:01 PM
PS, sorry about the name thing, I read your post really fast.  Welcome to the site, Bill.  JD.
Title: Re:Grover's disease
Post by: mic on Saturday April 24, 2004, 11:56:23 PM
Hi Bill 3 ( and all),

I was a central FL. (Gulfcoast) resident for 27 years.  Not a beach bum.  But I was opperated on for trygiums (eye disorder from sun) about 17 years ago.  I also have found temporary itch and pain relief from Aveeno lotion (stress relief formula) - also refrigerated Noxema.   I have been diagnosed with post-traumatic stress disorder shortly before Grovers.

I skipped my NUV light treatments (3x/wk.) this past week while I was out of town.  No big flare up resulted, but I still have almost spasmatric jerks in the morning and evening as my skin feels like I am being bitten by insects.  Seems to be related in some way to changes in skin/body temp.

I am wondering about treatments for stress, - since my Grovers seems to have a stress aspect.  Has anyone tried acupuncture (as an alternative treatment/medication?)   Also I am going to investigate a seritonin uptake related drug.  Something prescribed for depression perhaps?  I wonder if treating the emotional / psychiatric dimensions might alleviate Grovers???

I am a bit ashamed to once again admit this, but several months ago my Grovers moved to my genital area.  Now it is not in any way so bad.  Any connections from anyone to this or related treatments?

I have a great respect for those who continue to work during Grovers outbreaks.  I am retired and have experienced a great desire to isolate and just be left alone when I hurt.  If I had to hold down a career at the same time as Grovers, I do not know what I would do.

Enough for now.  Thanks to all who continue to share.  I have an appointment with my derm on Monday and will take much of what I have heard here with me.      Mic
Title: Re:Grover's disease
Post by: Gobe on Sunday April 25, 2004, 12:00:05 AM
Mic you have nothing to be ashamed of!  I often have outbreaks of eczema on my genital areas and so do many other skin disease sufferers on this forum.


 :hugs:
Title: Grover's and acupucture
Post by: Jimbo on Sunday April 25, 2004, 04:23:32 AM
I tried treating my Grovers with acupuncture. It ended up costing me quite a bit, $65 a visit, once a week for at least 6 months. It didn't help me. Might work for someone else. I mentioned in an earlier post that I was starting treatment with a new cream called Protopic. I'm giving up on it. It seems to make my skin worse. Personally I've found eczema creams such as this one only aggrevate the condition.

Jimbo
Title: Re:Grover's disease
Post by: BobC on Monday April 26, 2004, 04:50:39 AM
Mic,

I agree with Gobe no need to be embarresed on this forum, I to have had similar outbreaks.

I am the one who has posted about the calamine based lotion, my presribed mixture has a calamine base with phenol and menthol added, this provides my primary relief (no cure though) along with pinarsol a soap alternative.

I have not tried acupuncture, but my doctor put me on an anti depressant for a while, he thought it would help me cope with my Grovers, it didn't though.

Regards,

Bob C
Title: Re:Grover's disease
Post by: kenbkb on Wednesday April 28, 2004, 01:57:22 PM
Hi all,

I am going to report on my accutane usage and results. I was prescribed 40mg, which I believe is a mid range strength, once a day. After 7 days, it excessively dried my scalp, lips and face. I had to back off to taking 1 pill every other day, and now to 1 pill every 3rd or 4th day due to the side effects. So after about 3 weeks or 21 days, I have only taken about 11 pills. I have found that it is about 50% effective in controlling the Grover's. Plus or minus a few percentage points. There is definitely an improvement. It would seem that proper dosing is an issue for optimal effectiveness.

When I use up the 30 pills, which could take two months, or to the end of May, I will visit my derm and discuss dropping the dosage to find the proper dosage which will add more consistency to the effectiveness. I am told that at some point it will be stopped...then we'll see how long the effects of the treatment will last.

This is for all considering accutane treatment.

Anyone else report usage of the skin cancer creams/lotions and their effectiveness??
Title: Re:Grover's disease
Post by: BobC on Sunday May 02, 2004, 06:32:29 AM
Kenbkb,

Interesting, I will be keen to hear more, my derm looked at me like I was stupid, but will discuss accutane during my next visit, I think he may be doing some research himself.

I am currently in the middle of another or ongoing Grover,s outbreak and I am frustrated, although I could best describe it as not really going away, just various levels of how it appears and affects me.

Regards,

Bob C
Title: Re:Grover's disease
Post by: jd1 on Sunday May 02, 2004, 03:05:40 PM
It's frustrating, isn't it?  I've also run into a couple of docs who think that I am nuts.  But I only know two people who have tried the AK/skin cancer treatments, and both of us have benefited.  Small sample, but still, good rate of material improvement!  And if the docs knew the answers, we wouldn't all be talking, right?  Clearly we need to think outside of the box.  And if it's sun damage/sun trauma, as theorized by National Organization for Rare Disorders (œIts cause is unknown but thought to be related to trauma to sun damaged skin) and many others, why are we starting with treatments for eczema and psoriasis, among other diseases, instead of treatments for sun damage?  I'm just venting my frustrations with the medical profession right now.  Anyway, good luck.  
Title: Re:Grover's disease
Post by: kenbkb on Monday May 03, 2004, 03:12:30 AM
bob c,

i am up to day 24 now, and have only taken 12 pills of accutane at 40mg each. that is after taking 1/day for the first 7 straight days and realizing it was way to potent (excessively dry skin). i would rate the performance of the accutane at providing 50-65% relief at this point. i suspect since my dosage is way too strong for me, i should be getting a new scrip at something like 10 or 20mg or something like that. and i should be taking it regularly instead of foolin around with taking the 40mg every 2-4 days. since i paid $43 for the scrip i'm inclined to use as many of that original scrip as possible (I'm frugal). i look forward, however, to getting on a steady dose of a lighter strength sometime in the near future. i am also of the understanding that it takes at least several months to get longer term relief from it (i assume that means you must take it longer to get relief ONCE YOU STOP TAKING IT). In any case, i'll continue to post here. Accutane has not stopped everything at this point, that's for sure, but I am seeing some relief. Ken
Title: Re:Grover's disease
Post by: BobC on Monday May 03, 2004, 09:23:03 AM
jb1, kenbkb,

Thanks for your thoughts, comments and insight as to how you are going, I will keep working on my derm and GP,  I will be seeing my GP in the next couple of days, please keep the info coming.

Regards,

Bob C
Title: Re:Grover's disease
Post by: kenbkb on Wednesday May 05, 2004, 03:29:40 PM
jd and kit,

Would you both be so kind as to share your experience with the skin cancer creams (assuming they are creams)? I have a visit coming up with my derm and would like to forward on some information.

For example:

Which ones?
How long have you used?
Dosage?
Side effects?
And how would you rate the efficacy (in a percentage, or "good" or "poor", etc.)

And how did you get your derms to recommend this? Or were they knowledgable enough to know to try it??

Thanks very much!

Ken
Title: Re:Grover's disease
Post by: jd1 on Wednesday May 05, 2004, 04:28:31 PM
Hi Ken, I think I've answered most of those questions in earlier posts.  I don't want to repeat myself but am happy to answer specific questions you still have.  I am currently using Retin-A 2 nights out of 3 and Solaraze 3 x per week mixed w/ Aveeno lotion.  The mix I am using is slightly more lotion to Solaraze.  It spreads really easily.  The improvement is significant and definitely better than all of the other stuff I have tried, but not 100%.  I should also mention though that too much of either causes its own rash.  My back isn't very good right now and I think it's b/c I've been too aggressive w/ the Retin-A.  That's the total side effect that I've experienced with Solaraze - its own rash.  Also, Aldara burned the crap out of my skin - I had applied it like lotion and it only took one night to wreak havoc.

Most of my derms have not been open to these experiments.  I have had better luck w/ the GP.  Kit seems to have better luck w/ her derm.

I will tell Kit that you asked for some information from her.  She is really busy right now so it may be a while before she posts.

Please let us know how your appt goes.
Title: Re:Grover's disease
Post by: kit on Wednesday May 05, 2004, 05:51:44 PM
Hello

One thing I might add to  what JD said is---DO NOT use Retin-A with the topical chemos. It will make your lesions and your skin worse. Several studies have been done on this and Retin-A will irritate  during the use of  topical chemos and can actually cause a burn that can take weeks to heal and is painful--so please be careful when using Retin-A with ANY topical chemo. Some people seem to be able to tolerate using the chemos and the Retin-A with a two day break in between. Never apply it to the same area though.

I have found awesome results systemically  for my Grovers by using Efudex. I apply about an eraser size amount or smaller on the back of my hands ( which I am treating for AK currently) about 3 times a week.  The results on the rest of my body for the grover's is awesome. you would never know I had Grover's. But if I stop--which I have several times just to test it--it comes immediatley back. I belive that there are different strains of Grover's out there. Mine I believe is linked to sun damage. That is why I suppose that the skin cancer creams work for me. Ihave had Grover's for many years. I have tried every suggestionout there from drugs to diets to lasers to you name it with no relief at all. Tis is the only thing that has helped me at all.
Title: Re:Grover's disease
Post by: jd1 on Wednesday May 05, 2004, 05:57:03 PM
Wow, live and learn!  I did not know not to use Retin-A & the topicals at the same time!
Title: Re:Grover's disease
Post by: kit on Wednesday May 05, 2004, 05:59:31 PM
Topical chemo drugs--like Efudex, Aldara, Soloraze Carac etc. Not just regular topical creams but the chemo ones
Title: Re:Grover's disease
Post by: kit on Wednesday May 05, 2004, 06:24:13 PM
Bill

I too spent 30 years in Florida as a sun worshiper. Have you looked into trying any of the skin cancer creams to help you with your Grover's? I bet your Grover's is like mine abnd certainly caused by the skin being damged from over exposure to the sun. It certainly is an avenue you might want to explore. I miss Florida but not the sun.

Kit
Title: Re:Grover's disease
Post by: mic on Friday May 07, 2004, 02:57:06 AM
Hi All,

Saw my derm about 10 days ago.  I am already on NUV treatments 3x week and he wanted to up it to 5x.  I said "No."  Don't want my life to revolve around the clinic.  But he also has added a steroidal cream, Triamcinolone Acetonide  (0.1%) Twice a day.  He also told me to use Dove Unscented Bar Soap and a moisturizing lotion called Cetaphil.  (Osco Drugs has its own generic equivalent.)   In the last 10 days I no longer have any bleeding sores, the lesions on my neck have disappeared and my back is much clearer.  I continue to use Noxema after the steroidal cream and Sarna Lotion for any real "itchers" along with the internal meds, Hydroxizine (and Lorazepam added only at night.)

I have been able to get back to my walks along the lakefront - even on sunny days.  The big question will be what happens when the summer heat kicks in.  I also continue to deal with a profound fatigue at times.  Still, right now I am at the best point/most comfortable since this first outbreak began last November.   The next step up will be Soriatane if things get worse and my derm decides to become even more aggressive.  He is very definate and confidant about where he wants to go on this, has other Grovers patients,  - and warned me not to spend too much time with the annecdotal information here !!!  All of this comes with a grain of salt.   I believe the insights from some members that there may be different kinds or stains of Grovers is right on.

Mic
Title: Re:Grover's disease
Post by: kit on Friday May 07, 2004, 06:41:21 PM
I tried all that as well The Triamcinolone Ace both oral and in creams and also compounded with other additives. I never had any great results. I also use the Dove soap, dye and scented free laundry products and deodorants. While I can see your doc's point of view I also think you can get some great support and new ideas that you can talk to your doc about. After all there are things that you can teach him as well. There may be a suggestion that you find here that he may not have thought about. Always good to keep your avenues open and try to learn all you can.  That is the whole idea with this--to share ideas and hopefully help one another and our docs. Hopefully the Triam will help you through the summer heat. Good Luck with that. I know how tough that can be.
Title: Re:Grover's disease
Post by: kenbkb on Sunday May 09, 2004, 05:10:12 PM
Just wanted to give everyone an ACCUTANE update. I am on day 31, but still have only used fourteen of the thirty 40mg pills prescribed for me. I am hoping to get in to see the derm this week so we can discuss taking a much lower dosage on a DAILY BASIS, or, to make the injestion of the med "more regular". I can still report a 45-65% improvement, roughly. Side effects are prominent I should add. With me, it is a flaky scalp, chapped lips and a drying nose. And this is just on one 40mg capsule roughly every 2-3 days.

I am definitely planning on bringing the derm's attention to the skin cancer meds that jd and kit are using. They both appear to be having a good deal of success. Anyone else see a positive effect on the Grover's from a skin cancer med?

Also, I want to ask the board if anyone suffers differentiation more during the night time. In other words, is there often a change when you wake up in the morning? And, if so, what has been done to circumnavigate this issue? Maybe it is only me, but I never know how many new Grover's "spots" I will see when I look in the mirror after waking in the morning.

Thanks, all...

Ken
Title: Re:Grover's disease
Post by: jd1 on Monday May 10, 2004, 02:15:44 PM
interesting re the nighttime thing.  my skin is best in the morning when i wake up, before i then irritate everything with my workout and a hot shower.

fyi, i quit using both Retin-A and Solaraze for not even a week, my skin is really creepy.  i guess i had forgotten the extent of my disease.  i wasn't expecting it to flare so quickly.  i feel like that tells me that my drugs are helpful in controlling it.
Title: Re:Grover's disease
Post by: kenbkb on Monday May 10, 2004, 10:35:56 PM
jd, did you ever use the efudex? and, in a follow up to that, do you have skin cancer issues in addition to the grover's?? was it your derm that prescribed the solarez?

ever tried ice on grover's spots? I seem to get relief from that, almost better relief than the steroid cream, although obviously far less practical.
Title: Re:Grover's disease
Post by: jd1 on Monday May 10, 2004, 11:01:55 PM
I have not tried Efudex.  I do not have any skin cancers that I am aware of.  The derm that I was seeing when I wanted the Solaraze would not give it to me.  She said no, and after I had my fit :), I called my GP and got it from him.  Yes, I have tried ice, it helps a bit, thanks for reminding me.  Am going back to Retin-A tonight and doing the Solaraze slather tomorrow am.
Title: Re:Grover's disease
Post by: kit on Wednesday May 12, 2004, 12:45:25 AM
Efudex may be more effective on Grover's as it is a stronger cream then Soloraze. While Soloraze is for the treatement of AK--Efudex also treats pre-cancerous and cancerous lesions such as basal. I feel it worked well for me becasue I also believe that my grover's is from sun damage. I only have grover's where the sun hit my body. In other words not where my bathing suit covered the skin. Like I have said before I believe that there are different forms of grover's. If your doctor would not give you Soloraze that may be a wise thing. I had a terrible reaction to Soloraze that took over 3 months to heal. It was lesions in my mouth, throat esophagus. So I would be careful there and not use it unless you were under the care of a doctor who knows that drug. From what I have heard from other people using Soloraze--they have not had favorable results long term and side effects. I think..and I stress the think part-- that Efudex works for me becasue it is such a strong drug for skin cancer. Since I believe my grover's is caused by sun I also see the link to why that drug has been so miraculous for me. It is attacking the sun damaged cells which I also believe causes my grover's. Just a thought..but so far it has helped me like no other and I have tried just about everything. I never knew I had so much pre-cancerous lesions. You certainly could not see them-until the Efudex brought them out.    I was shocked to see the amount of damage by the sun that could not be seen with the naked eye. That only drove home my view that my grover's is based on sun damage.

Title: Re:Grover's disease
Post by: dg1 on Wednesday May 12, 2004, 11:00:55 AM
I live in the UK and have just been diagnosed with grovers.   My current NHS (public) dermatologist doesnt seem to know much about this condition.

Does anyone know a good (private sector) dermatologist with knowledge of grovers in the UK - preferably London area?

Incidentally, Australasian Journal of Dermatology May 2004 edition contains a review of the literature on Grovers. For what its worth their "favoured regimen" seems to be in line with previous posts:
(i) morning emollient, for example 10% glycerine in sorbolene or emulsifying
ointment BP
(ii) nightly mometasone furoate 0.1% ointment
(iii) acitretin 0.3 mg/kg for 2 weeks, reducing over 4 weeks as process settles;
(iv) failure to respond promptly to acitretin prompts the addition of nb UVB therapy at 70“100 mJ/cm

I agree with the overexposed-to-sun-when-child theory.  I grew up in Hong Kong and got seriously tanned/sunburnt as a kid until the age of about 15.  Kept religiously out of the sun since. Also I think its pretty telling that all the best doctors and research for this condition appear to be in Australia or US, very little in Western Europe etc - its a freak disease in UK according to my dermatologist, she'd never seen it before and it has been misdiagnosed for 3 years.  Add that to the apparent success of skin cancer treatments and I think its pretty likely the sun is to blame in many cases.

I suspect having grovers also greatly increases your propensity to get skin cancer, all other things being equal.

Title: Re:Grover's disease
Post by: Gobe on Wednesday May 12, 2004, 06:48:17 PM
 :hi:

Welcome to Skincell dg1!

 :)
Title: Re:Grover's disease
Post by: BobC on Thursday May 13, 2004, 03:28:30 AM
kenbkb, jd1 and everyone else;

Ken,

I most certainly have overnight flare ups, my sleep patterns are out of this world and most irregular for someone who used to sleep like a rock before Grover's, my doctor put me on Phenergon to help with the itch of a night as well as to help me get off to sleep.

I usally notice the extent of my flare ups first thing in the morning, I sleep cool, I have noticed that if I am warm or hot in bed I am usually worse in the mornings.

I have just finished a course of meds to try and knock over the Helicabator Pylori (HP) within me, my Doctor and I are trying to reduce all of the known issues that I have, we still not been have control of the Urticaria Vasculities ( a different rash plus stomach and heart problems) which seemed to develop as a secondary to Grover's.

He has suggested we do not try any of the meds that have been suggested until we hopefully clear up a few other things and get through this significant fatique type problem I also have.

I know that is a fair bit of information overload but that is where I am just kown, everything seems to have occurred or followed confirmation of Grover's about this time last year.

Please keep the updates coming, at least my Doctor is prepared to listen.

Regards to everyone,

Bob C
Title: Re:Grover's disease
Post by: BobC on Thursday May 13, 2004, 03:35:55 AM
dg1,

Welcome fro another with Grovers, hope your treatment provides some relief.

In relation to the journal report, do you know if this this available on line and where it might be, I am not all that smart on the computer search thingo as yet.

Regards,

Bob C
Title: Re:Grover's disease
Post by: jd1 on Thursday May 13, 2004, 01:57:06 PM
Hi Bob, there is a whole list of articles at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Display&dopt=pubmed_pubmed&from_uid=15068451 including the one in question.  I didn't find it particularly remarkable - had to pay $25 to get the copy, through Blackwell Synergy.  If the link isn't good, you can probably find it by doing a search for Australasian Journal of Dermatology Grover's.

That's good that your doc will consider new ideas.  
Title: Re:Grover's disease
Post by: Bill 3 on Thursday May 13, 2004, 02:45:27 PM
Hi Kit:

I have used the Aveeno anti itch concentrated cream ( $8 )
for three weeks now, and have experienced about 90%
abatement. I am heading to the beach for a week next
week ( gulp ) and that will be the real test for me.

I will report back if survive.

Bill 3
Title: Re:Grover's disease
Post by: kenbkb on Friday May 14, 2004, 12:59:42 AM
Interesting that some of us are having this overnight thing going on. And, Bob C, you are "sleeping in cool temperatures", to boot. I don't know quite what to make of it myself, although I believe there is a strong link to the fact that the warmer I keep myself, the more I am apt to have more spots in the morning. Anyone else???

Gonna take a stab at that Aveeno lotion, Bill 3, although I could have sworn I used it years ago. When you say the Grover's is 90% gone, are you also saying that it is "clearing up the spots", not just stopping the itch?? How long have you used it also???

Just got back from my follow up with the derm to discuss the accutane. As I have noted, I was on 40mg, that was far too much for me and it was significantly drying out my skin to the point that I didn't know which was worse, the Grover's or the dry skin from the accutane. Although I must say there were days where it did bring me significant relief in the six weeks I was on it. My derm and I decided to go on 10mg for 10 days and see what happened. If there was not enough efficacy, and no side effects either, I am to ratchet it up to 20mg and go from there. He indicates that to get the most efficacy, the length of time you are accutane is very important. The longer you are on it, the greater the potential for a longer term remission. I must add that he is speaking of his acne patients, many of whom are cured for life by the accutane. He had no other Grover's patients but I asked him to ask his four associates if they had any so that we could swap notes perhaps.

I want to also add, that after setting up this regimen, I brought up Kit and JD's oft-mentioned EFUDEX and SOLAREZ. He was very open to it down the road. He thought we might have something here and would consider looking at this if the accutane did not achieve the intended results.
Title: Re:Grover's disease
Post by: kit on Friday May 14, 2004, 01:07:49 AM
I have found that the sleeping aggravating the Grover's is simply because you are laying down and the warmth of the body with no ventilation on the bed over that extended period of time causes some irritation. Sleep in very cold room and try using 330 TC sheets or higher that have no scented laundry detergents etc.. But if it is at a time that your grovers is very active it seems hard to deal with.

Glad to hear your doc is open to the skin chemo drugs. I think it is worth a try. It certainly has helped me and several others I know. I am  working on getting some of the findings published by a high profile doc  I will keep you all posted of that.

Has anyone tried Cantrol? Any malaleuca products?
Title: Re:Grover's disease
Post by: Bill 3 on Friday May 14, 2004, 11:33:26 AM
Ken, yes I am talking the spots are 90%
cleared up. I have been using the lotion
three or four weeks. Two weeks ago I went
to the beach for the weekend, and it was
a little cool, but still warm and some sun.

The spots started to flair a little but applying the
cream at night, and they were  90% gone
by morning.  

After ten years of Grovers, where it seems over the
period of a month at least one major flair up and
otherwise somewhere between maybe 20 to 30 %
active, the last four weeks have been very different.

I am off the beach for the week ( next week ) and
that will be the test, after that the week I spend in
the Bahamas each July has been a Grovers convention.
That will be the real test.

Bill 3
Title: Re:Grover's disease
Post by: kenbkb on Friday May 14, 2004, 03:49:06 PM
Bill, you wrote...

I am off the beach for the week ( next week ) and
that will be the test, after that the week I spend in
the Bahamas each July has been a Grovers convention.
That will be the real test.


Not sure what you meant by a Grover's convention? Were you just being facetious??

Ken
Title: Aveeno anti-itch cream
Post by: Jimbo on Sunday May 16, 2004, 11:54:46 PM
It was interesting to read Bill's comments. I looked up Aveeno anti-itch cream on the web and saw that it was 1% hydocortisone. My derm gives me a perscription for a cream that is 2.5% hydrocortisone. I'm wondering if Bill has used such a cream.

Jimbo
Title: Re:Grover's disease
Post by: texasmfp on Monday May 17, 2004, 08:44:03 PM
Hi:

I am a 41 yo white male and was just diagnosed with Grovers.  The Derm has been experimenting with topical treatments.  Right now he has me on Metrozanole lotion (anti-anaerobic bacterial), Eledil, and Diprolene (corticosteroid).  I am lucky in that my outbreak doesn't itch.  The ointments have taken the redness away from the bumps, and seems to have stopped new ones, but the remaining ones are not disappearing.  This has been about 5 weeks of treatment and about 5 or 6 months of an outbreak.  I am deeply saddened to hear some of you say that you have had it for a decade or longer.  Transient my a$$.  
Title: Re:Grover's disease
Post by: kit on Monday May 17, 2004, 08:48:03 PM
I agree as there is nothing transient about it--wish that were the case though
Title: Re:Grover's disease
Post by: Gobe on Monday May 17, 2004, 11:14:10 PM
 :hi:

Welcome to Skincell Texas!

 :)
Title: Re:Grover's disease
Post by: mic on Tuesday May 18, 2004, 01:05:36 AM
Hey All,

Just wanted to check in.  Saw my dern today and wanted to share with all what's happening.  I totally believe with the insights offererd by others that there may be different forms of Grovers - with differing results from differing treatments.  I continue to believe that my Grovers is related to stress-Post Traumatic Disorder-etc.   I am so happy to report that I have experienced wonderful relief from the symptoms of Grovers I experienced (pain, rash, itching, bleeding) from the use of Triamcinolone topical cream (1%), Noxema, Cetaphil and Aveeno Lotion (mixed as moisturizers.) - Plus the internal meds, Hydroxizine and Larazepam.   I am now decreasing both the internal meds and the NUV light treatments.  As of today I will have the light treatments 2x a week instead of three.  I no longer have any bleeding sores, - (will have to discard the blood stained undershirts from the last six months).   After an extremely difficult day (two weeks ago) with fever, headaches, EXTREME fatigue like never before,) - the very next day I felt like I had been reborn and the Grovers is now secondary to anything else.  I no longer have the pain and itching that I had experienced over the last six months.

Two points, - perhaps this is the start of the transient phase of the disease.  So maybe the symptoms would decrease no matter what.  I must also confess that the in the very deepest origins of the cause of my post-traumatic disorder, it felt at times that my mortal body could never contain the RAGE and ANGER and DISILLUSIONMENT that I was experiencing.  Many friends believe that my Grovers is simply the poison of such an experience just finally working its way out of my being.  Who knows?  I am simply very glad to report on the positive results from the regime my derm prescribed.  I am so totally overwhelmed by the unpredictability of this disease, - so I offer all of this with the caveat that perhaps my Grovers came from stress rather than sun exposure - even though I lived in Florida for 27 years.   Right now, relief has overcome experiencial knowledge and it just feels good to feel normal for the first time in a long time!   Mic
Title: Re:Grover's disease
Post by: kenbkb on Tuesday May 18, 2004, 03:36:28 AM
Anyone ever used Calm Cream? I used it years ago before I knew what I had. I remember having very good success, and then it badly burned my skin because I mis-used it (unknowingly). I abandoned it for no other reason than I didn't look into it futher, figured it wasn't right for me. Got to looking into it again (intsteadof.com), might be a promising one to reconsider. I had terribly mis-used it, but did have excellent relief before my abuse of it. Just some thoughts...

ken
Title: Re:Grover's disease
Post by: kit on Tuesday May 18, 2004, 11:55:52 AM
Mic

I am so happy for you! That is great. I too went through the exact symptoms that you describe--only difference is that the drugs you are using were only a temporary fix for me. The grovers always seemed to be there and never totally went away. Not until I started using skin cancer chemo drugs for the AK and basal. Though our grovers have exact symptoms and we both lived in Florida for 30 years or so. Mine is surely from sun damage.  Though stress may aggravate it as we know how powerful stress can be. I still believe mine is from the sun and I admit I was a sun worshiper and water sport fanatic. My grovers was so bad at times that was on my legs, and upper arms as well as the trunk but NEVER on areas that my bathing suit covered. Which leads me back to my original comments on this skin forum and that is ..that there are many forms of skin rashes that pathologist put under the Grover's umbrella. In time I am sure that will change.  Just like Grovers use to be mostly in older men. Now it seems many woman in there 30's with infertility problems have developed the disease too. I have spent over 12 years tracking this disease and life styles with many people. That is why I believe these forums are so helpful. The sharing of ideas and pro's and con's gives our doctors something to think about. I know for me my results with chemo creams have helped several other grover patients.
While our Grovers may be different out there the ideas shared here are a wealth of info and like seeing 30 other docs for ideas.

I pray you have continued great results. Thank you for sharing.
Kit
Title: Re:Grover's disease
Post by: Bill 3 on Wednesday May 19, 2004, 06:26:08 PM
Ken;
Grovers convention, as the heat and sun
in the Bahams has proven to bring out the
worst of my Grovers condition.

Bill 3
Title: Re:Grover's disease
Post by: jd1 on Wednesday May 19, 2004, 07:02:16 PM
Bill 3, I am very interested in your little experiment.  Success with an easy, OTC lotion seems preferable to dealing with the Rx with unknown side effects if used long-term.  Is your skin like normal skin, without itchy bumps, or is it just improved compared to what it has been?  How often are you using the stuff?  Are you applying it all over or just to selected areas?  When you get out of a hot shower, does the skin still flare, or is that controlled also?  Thanks,
Title: Re:Grover's disease
Post by: BobC on Thursday May 20, 2004, 01:13:50 AM
Mic,

Likewise, I hope your releif is long term and that transient is out of the question, keep well I have my fingers crossed for you.

Bob C
Title: Re:Grover's disease
Post by: BobC on Thursday May 20, 2004, 01:17:43 AM
Texas,

Welcome to the forum, you will find heaps of worthwhile info from those who canoffer it via this forum, transient well that is a real point for debate.

Regards,

Bob C
Title: Re:Grover's disease
Post by: mepen on Sunday May 23, 2004, 05:08:37 AM
I've been on 10 mg of Accutane per day for probably 8 or 9 months now with some success. In the last few months, I've cut back to taking the Accutane every other day and/or every 3rd day. If I go 4 or more days without the Accutane, I find I start flaring again. Even though it's a low dose, I'm sure I can't remain on the Accutane forever. When the doc takes me off, then what?

Stress, heat, hormones, and milk products aggravate my disorder. My lesions are on my legs and arms, and after they open, they leave hyperpigmented spots that look like freckles. The only amusing thing: I began dying my hair red about 4 years ago and I look like a "true" redhead with my freckles.

Like Kit and JD, I have had LOTS of sun exposure throughout the years. For probably 15 years of my life, I spent every sunny summer day on the beaches of Cape Cod.

I see a derm in Boston because the derms here haven't seen the disease in any women and they don't know how to deal with the disorder. Sad thing I've learned over the last 2 years: the derms in the best hospitals of Boston don't know what to do either, other than prescribe oral or topical retinoids. However, they did say Grover's is not such a rare disorder, at least in their clinics, as they see plenty of cases pass through their doors and plenty of cases in women like me. Unfortunately, there is no real answer or cure from these docs.

I think next step will be to try the topical Solaraze that Kit and JD have recommended, if I can convince the docs to let me try it. If anyone has had any success with anything, PLEASE take time to post. Thanks.
Title: Re:Grover's disease
Post by: kit on Sunday May 23, 2004, 01:08:32 PM
Mepen

Hi. You mentioned my (kit) luck with the Soloraze but my grover's sounds very differnt from yours. Mine started on the trunk. I only got a few lesions on my arms and legs and that was after several years of having the disease. The ones I would get there were very temporary too. My rash/lesions never turned to look like freckles either and milk/dairy products never botherd  it . So I do think you and I have different forms of the disease.

While I have had great results with the topical chemos--I would not suggest you try them unless you are under the care of a dermatologist who is very informed about these chemo drugs. They are not the type of drugs you experiment with. Trust me as I was overdosed by a derm using Soloraze and it took me months of seeing 3 specialists to get over it. It was really bad and the oral lesions it gave  me lasted up to 4 months and were painful. So PLEASE while it is great to discuss these drugs among us --it is not smart to just try one without great derm supervision. Do you have any AK, Basal or squamous cell? If you do then it would be advantageous to try them for that and then see if you gain any systemic benefit. That is how I found out as I was being treated for skin cancer. The chemo creams were given to me for tht and NOT the Grover's initially. I do know several other people who have had great result with these chemo creams as well but they too have AK or basal with the grover's. Also I am not adding Tazorac to the mix once weekly on no more than 20% of the skin and not where the chemos are being used.  Just started so we will see how that goes. Good Luck. Also I jsut want to make sure no one ever goes through what I did last summer with Soloraze. I have recently found out that I am not alone either which is sad. So be careful with the amount of Soloraze you use and on what percentage of your body and how often. Less is better and the result are the same and safer.
Title: Re:Grover's disease
Post by: kenbkb on Sunday May 23, 2004, 05:15:35 PM
MEPEN,

Thanks for sharing. I think I have found a connectedness to dairy products as well. I am going to be as diligent as possible with avoiding dairy to see what relief, if any, I get. I noticed every morning within an hour or two or three of arriving at work every day, I was getting several very itchy Grover's spots on my back. I am stopping my morning cereal for a few weeks to see if those early morning flareups will disappear. I have noticed hot peppers, in addition to stress, of course, can aggravate the Grover's.

Did it take you a long period of time on the accutane to have any success? I have noticed it pretty quickly, but it is far from the wonderful relief Kit and a few others have gotten with the Efudex. I have no sun damaged skin so my Grover's is not related to that. I am on day number 7 of 10mg of accutane, after a trial of 40mg which was far too strong and brought on undesireable side effects. I might say I have 40-50% relief thus far. My derm tells me that with his acne patients, the longer they take it, the longer will be their relief. That is obviously not the case with you, as 8-9 months seems like a pretty long trial period. I'm disappointed to hear that as soon as you are off in for 4 days it comes back. Have you ever gone a lengthy period on 20 or more mg??

Ken

Title: Accutane 10mg
Post by: mepen on Thursday May 27, 2004, 02:34:13 PM
Ken,

No I was never bumped up to 20mg because I showed improvement on the 10mg. I did request to try 20mg but the doc refused. Her reason? She said that crossing over into 20mg is a threshold where side effects are more likely and more severe... such as high trigylcerides, joint aches, nose bleeds, etc. I was already having chapped lips and minor nose bleed on 10 a day. My blood work was fine though.  She said when it comes to Accutane I should take the lowest dose possible that shows improvement and since 10mg was doing it, she would not bump it up.  This was a bit frustrating because I thought 40mg a day might stop the Grover's permanently once and for all.  She said it's not like that, it's not that simple. She was impressed and liked what she saw on the 10mg...the lesions smoothing out...no flares....no open lesions....I liked the fact I stopped itching. Well, whatever. So that's my story. Now I have to find a new derm since this one has left the area. Who knows.....the next derm I find may have a whole different outlook. It does get confusing......

I have learned to watch my diet: not too much alcohol and avoid dairy products. Unlike you, I can eat hot peppers, though, and I do eat plenty of them. I can't wear wool or scratchy fabrics. I use Dove unscented soap, moisturize my legs and arms, wash clothes and bedding with Arm & Hammer unscented liquid laundry detergent for sensitive skin. I avoid the sun. It's a whole regimen I must maintain to keep the Grover's in check.

Melissa
Title: accutane again
Post by: mepen on Thursday May 27, 2004, 02:42:27 PM
Ken,

I failed to answer one of your questions:  How soon did I notice results with Accutane?  I noticed results fairly quickly. By week 3 there was noticeable improvement.  By the time I saw doctor for next visit after being put on the Accutane (4 to 6 week time frame), she and med students saw the improvement too.

So, yes it works and works fairly quickly, but just like your case, it is not a cure all.  

Melissa
Title: Re:Grover's disease
Post by: kenbkb on Thursday May 27, 2004, 11:35:28 PM
Melissa, thanks. Are you still on accutane now? And no long term relief after stopping, huh?

My derm is ready to dispense it comfortably, so there are some who are willing to work with you.

These people got longer term relief. Small sampling, but apparently they did. Are you considering the cancer chemos noted by kit and jd and others?

Ken

http://dermatology.cdlib.org/rxderm-archives/grovers
Title: Re:Grover's disease
Post by: mepen on Friday May 28, 2004, 03:24:54 AM
Yes, I'm still on 10mg. However, for the last month, I've been taking 10mg every 3rd day and even this small amount keeps Grover's in control. However, I went to NY for a week and I ate some dairy, drank more than my usual of alcohol, up odd hours, forgot to take Accutane etc.....went off my routine....by the time I was heading home I had a tiny itchy blister on my forearm and my Grover's was acting up. So, for the past week, I have upped the dose and went back to 10 mg every day. It worked. The Grover's subsided and healed by day three. So, beginning this weekend I'll go back to every other or every 3rd day of the 10mg. I think I'll be okay on that dose now I am home and back to routine.  

I do however have numerous hyperpigmented lesions (like freckles) all over my arms and legs from years of Grover outbreaks. I suppose I could try bleaching cream to get rid of the spots, but I'm frightened I might irritate the skin and flare the Grover's again. Has anyone out there put bleaching cream on old Grover's lesions?
Title: Re:Grover's disease
Post by: kit on Friday May 28, 2004, 12:55:05 PM
I tried bleaching on two occasions--it helped the real freckles but did nothing long term for the grover's.

Kit
Title: Re:Grover's disease
Post by: kenbkb on Saturday May 29, 2004, 04:24:03 PM
Melissa, yes, routine is very important for Grover's sufferers, I suspect. Good sleep, cooler weather, etc. The daily 10mg is keeping it in check, I will agree, but every so often a battery of spots "sift through" for lack of better phraseology. I'm happy to hear you have been able to extend it out to 1 every 3 days for now.

I'm paying about $35/month for it at Walgreen's with my insurance factored in. I know you can only do a month at a time and Canada doesn't sell. Wonder if Wal Mart or Costco have it cheaper?

Have you ever gone the antibiotic route (tetracycline, cipro, etc)?

Or tried this calm cream? www.insteadof.com

Ken
Title: Re:Grover's disease
Post by: mepen on Monday June 07, 2004, 12:56:59 PM
Ken,

I'm on generic Accutane and I believe I paid $10 for my last 30-day supply.  However, my first prescription beginning 2004 cost me $110 as I have a $100 deductible to satisfy first. I have an HMO plan and I get my prescriptions at the local CVS.  Accutane prescriptions can not have refills.  Docs must write a new prescription each month and each one has to have the mandatory yellow sticker.

No, I never tried Calm Cream. I use Gold Bond Body Lotion Triple Action Relief (14 0unce white bottle with red pump top) Gold Bond makes 3 or 4 different lotions, some with menthol. This one does NOT have menthol. This one works very well. I pat my skin with a towel (do NOT rub skin after showering) and while skin is still moist I smooth this onto legs and arms. Then let it sink it. It definitely helps.

Also, according to someone's recommendation (was it yours?) I just bought Aveeno Daily Moisturizing Lotion (8 ounce beige and avocado green tube) and used it the past few days. So far, so good, but so far, no better than Gold Bond. However, it is more expensive than the Gold Bond and after reading ingredients----they have the same main ingredients in common: dimethicone, water, glycerin, etc...... So, unless I see more improvement with the Aveeno, I'll probably stick with the Gold Bond since it is more cost effective. We'll see.

Yes, I used to be on tetracycline for acne for many years. I took the tetracycline when I was premenstrual and breaking out. It stopped breakouts from turning into acne cysts and it did help calm down Grover's flares but never worked as well as Accutane. However, I know someone who specifically took tetracycline for Grover's and it didn't do any good, it actually made Grover's worse for this individual. Also, an important note for you regarding tetracycline and Accutane: do NOT take tetracycline WHILE YOU ARE TAKING Accutane.  My dermatologist said this is a NO-NO. There is increased risk for a rare but serious side effect to the brain when these two drugs are combined---a condition called pseudotumor cerebri which is benign intracranial hypertension.

Melissa
Title: Re:Grover's disease
Post by: jd1 on Monday June 07, 2004, 04:19:23 PM
Hi Ken, I am the one Mepen knows who took the Tetracycline specifically for Grover's.  Within 2 weeks I had flaring on my legs that had been well controlled for quite some time and my trunk was horrible too.  The derm insisted that I stay on it, but I refused.  

Are you the one who had success w/ calm cream?  If so, can you tell us more about it?  Thanks.
Title: Re:Grover's disease
Post by: kit on Monday June 07, 2004, 04:59:29 PM
I think many of us have tried Tet for grover's. Those of us who have had the disease a while that is. It was the preferred method of treatment back then. When I used it I noticed no relief from it at all.
Kit
Title: Re:Grover's disease
Post by: kenbkb on Tuesday June 08, 2004, 05:22:55 PM
JD, I did have success with the Calm Cream several years ago. It was given to me by a friend who was into naturalistic healing and stuff of such sort. I had no idea how to use it so instead of reading the label that noted the web site (insteadof.com) where they have more explicit directions, I slathered it all over my chest. Now this is 4  years ago before I even knew what was going on with my body. Anywho, the Calm Cream almost immediately "calmed" my skin down and made it moderately spot free, literally. I continued to use it quite liberally and ended up almost "burning" the skin where I was making the application. I laid off for a few days, slathered it on again, and got the same results, so I just sort of let it go. I remembered it by chance a couple of months ago and looked it up again on the net. I have not ordered it by am using it as an ACE IN THE HOLE, although I cannot be sure how well it will work on me 4 years later. I did call the owner of the product and had a nice talk with him. He talked about initially it does form a rash for you but eventually it leads to healing the skin. He also noted I believe that you do not have to place in on the spot where your problems are.

Melissa, the Aveeno that I culled from an earlier post here was for an Aveeno CONCENTRATED lotion. I found it a gym bag of mine so I must have bought it a year or so ago. I did not use it back then but am now, and I have found it to be quite effective. I am more pleased with this than any other over the counter cream or lotion I have found to date...to date, I must say. That's a good price you are paying for the accutane. I am on day number 16 now and did find that I could skip a day or two here and there and have the same results. I must say the efficacy now is riding at about 75% so I am well-pleased, but we all know how quickly that can change.....

Ken
Title: Re:Grover's disease
Post by: jd1 on Tuesday June 08, 2004, 05:37:29 PM
Hi Ken, thanks for the info.  Moderately spot free sounds pretty good.  I am currently off Retin-A and Solaraze b/c I have a derm appt (for the first time in a year) coming up, and I know he is going to want to see skin untreated w/ any Rx for several weeks.  I've been using the Aveeno anti-itch (was that Bill 3's suggestion?). which is pretty good for itch control, but I'd sure love to just have the spots go!  Perhaps the Calm Cream is the next experiment...Good luck w/ the Accutane.
Title: Re:Grover's disease
Post by: Bill 3 on Monday June 14, 2004, 04:46:03 PM
Bill 3, I am very interested in your little experiment.  Success with an easy, OTC lotion seems preferable to dealing with the Rx with unknown side effects if used long-term.  Is your skin like normal skin, without itchy bumps, or is it just improved compared to what it has been?  How often are you using the stuff?  Are you applying it all over or just to selected areas?  When you get out of a hot shower, does the skin still flare, or is that controlled also?  Thanks,

JD 1:
I have not been to this site much, and just noticed your post.

I do not know if I am in just a very unusual dormant period,
or if the cream has done that much good.

90% of my effected areas have gone to normal skin except
for the skin being white where the bumps were.
The remainig 10% are like small places that seem to be
trying to start, but after  a few days of the cream, they
go away. I apply the cream only once in the morning, and
once at night, only to the areas where the sign of a bump
is not gone flat to a small white spot.

I spent a few hours at one hot south fla pool this weekend
and no problems, a few hours a weekend in the hot yord
the last few weekends, and no problem. This is very unusual.

The real test will be the out west day hiking trip for 10 days
starting this Thursday, and the week at the end of July in the
Bahamas. The dry out west air, winter cold in the north east
or west, and the Bahamas have been a killer in the past.

If I make it these two trips without a problem, after ten years
of being a Grover Leper, something is going on. The only thing
I am aware of different is the cream.

Bill 3      
Title: Re:Grover's disease
Post by: DiGray on Saturday June 19, 2004, 12:40:51 AM
Hello!
Diane back again after a few months .. I have been following the comments and would have to agree with the sun damage theory as well as many other issues raised by fellow sufferers. I used Efudex a few years back to deal with the sun damage on my face .. can't recall though whether it made any difference to my Grover's at the time. I have tried the Chickweed Gel that was recommended and found it semed to cool the itch to such a degree that I was able to forget about the itch long enough and stop the 'gouging'. It always came back again though but not bad as a temporary relief. Following on from the theory that the Chickweed had potential I approached a pharmacist I know that is now working producing all natural creams, moisturisers etc etc I was already using his face creams, cleansers etc and find them excellent. He found it strange that the Chickweed Gel was white as Chickweed itself is a very strong green colour but anyway mixed me up a batch with higher concentrations of all the ingredients that were in the original Chickweed Gel. This mixture is very dark green. He also gave me some of a new cream that he had recently created (called Comfrey and Marshmallow Mask). It is intended to be used as a regenerative mask and one of its uses is for people who have suffered skin damage after radiation therapy for cancer. Well, the Mask has been so great that I have hardly touched the new Chickweed concoction. I have found if I apply the mask (also a green colour) when itching it stops the itch for hours and even for days sometimes. I am over the moon with the results and am interested to see how I go as I'm going away for two weeks and always find when I change my routine that it causes a real outbreak that nothing seems to ease until I'm back home and settled again. Will keep you posted .. this is what I've always been looking for .. something that makes me feel that I can live a normal life and it is a natural product .. brilliant. I don't know if the mask is being marketed yet as the sample I got was from the 'first trial' but if you are interested in it and any of his other products have a look at his website at www.pindariherbfarm.com - he is in Tasmania (Australia) and most creams are about $12.00 for a 50gram jar. Would be interested to hear if others find it as effective as I did as it seems some things work for some but not others.

Diane
Title: Re:Grover's disease
Post by: BobC on Sunday June 20, 2004, 04:22:56 AM
Diane,

Thanks for the update, I had some mild success (relief) with chickweed, I have looked at the site you mentioned and will give them a call, keep well and I hope your relief is sustained.

Regards

Bob C
Title: Re:Grover's disease
Post by: learsmom on Wednesday July 21, 2004, 01:24:57 PM
learsmom
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Grover's Disease
« on: July 19, 2004, 02:02:13 AM »        
------------------------------------------------------------------------
I am brand new to this forum and am trying to find my way.
I am in my second year of suffering from Grover's Disease. Since I fit none of the specs for this wretched stuff, I am looking for fellow "carriers" and get some hints from them  
I am female, 65, was diagnosed last year and have a very good dermatologist who has no idea what to treat me with. I have been using his coal tar and /1% cycolspar creme for a year and it seems to have no effect but to attract all dirt within 5 miles.
I am going through a treatment to destroy my thryoid, since I was diagnosed as hyperthyroid at same time last year. I keep trying to figure out if there is any connection...
Doctors seem to treat me like a    and pat me on the back and smile.
Meanwhile, I itch like crazy and have legs and arms that look absolutely awful...not counting the intense desire to scratch them bloody!
As you may notice, I am miserable and not liking it one bit. Anyone out there with ideas?

Since this first post I underwent the radioiodine treatment on the thyroid and had a massive outbreak of the GD...ended up going back to my GP who gave me a predinsone shot and put me on 1/2 7.5 Tranxene and 25.mg hydroxyzine hcl three times a day. Use the Aveeno soap and cream with little success.

Definitely feel there is some kind of interaction going on. Have been on Prozac for 13 years...no side effects...first attack of Grovers came in summer after losing two children in six months (just a little stress). Live in South Carolina so spring, summer and fall are hot. Sweating does seem to aggrevate the itching aspect. Swimming pool cholorine doesn't help either. A trip to the beach is hard because the sea water stings and avoiding the sun nearly impossible.

I hesitate to use the more robust stuff like accutane, etc. Feel there may be some kind of link between the auto immune system/thryoid and exposure to the sun.
As a 65 female with outbreaks only on legs and arms, I see a direct correlation to tanning...

Would love to participate in a study of whether there are other related causes/effects to this "transient" disease that has hung on for a year...

Thanks for listening.learsmom
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Grover's Disease
« on: July 19, 2004, 02:02:13 AM »        
------------------------------------------------------------------------
Title: Re:Grover's disease
Post by: Gobe on Wednesday July 21, 2004, 04:40:35 PM
My sincere condolences on the loss of your two children.  :hugs:

 :candle:

 :candle:


Title: Re:Grover's disease
Post by: learsmom on Thursday July 22, 2004, 09:57:53 PM
  To all:
;D  Had another thought to share...I too cannot wear my rings or watches, too much sweat. Developed a classy way to wear my watches (BIG Timex types) around my neck. At least I know what time it is.

Re Sleep Patterns:  Have an overhead fan and air conditioning at night, sleep in as little as possible, with only my feet under the sheet. In the morning, have little or no itching. It seems to develop as does my daily stresses...then tends to ease before going to bed. Have learned to shower in lukewarm water (Though I miss those hot soaking baths).

My grandchildren call me Spotty Nana. Have never been treated for any skin cancers...but have developed a semi-permanent red tinge to my arms and legs from the Grover's - even when there is no flare up of spots.

Does anyone know of any kind of NHI or similar study on this insidious stuff? No one offers much sympathy when you complain of itching!!! :'(

This board has saved my life...can't scratch while typing...well, just a little. But it sure is nice to know that there are fellow GDers out there.

Am still getting the hang of using the board. Bear with me, but keep the info coming.

(((to all))) Kay
Title: Re:Grover's disease
Post by: DiGray on Friday July 23, 2004, 12:25:02 AM
Hi Kay (Learsmom) and others!

Welcome to the site .. as you are beginning to find out there are a fair few of us out here with Grover's! I do wish they would stop calling it transient .. I've yet to meet anyone who had it ..and now it's gone!
As I wrote a few weeks back I have been having fantastic results from this Comfrey and Marshmallow mask. Even while I was away I seemed to be able to control it far more than ever before. I find that while at home I can generally get away without wearing bras .. but being away makes that harder to do. This time I had a few days when I really had to give them a break but generally the cream seemed to keep my itching to such a degree that I could put up with them on. I certainly did not suffer the usual anguish and tension associated with changing my routine and hang out to get home. I am also finding that my mental state is far more calm and relaxed as a result of the lack of that terrible bloody itch all the time! Has anyone else tried the cream yet? .. would love to know if it works on others. It seems that there are so many variable with this disease one can only experiment and hope for the best. I'm off to Sydney for a few days at the end of August .. and looking forward to it .. a new woman! I used to just dread changing my routine as the outbreak would be uncontrollable and unbearable!

Diane

Title: Re:Grover's disease
Post by: peterb on Friday July 23, 2004, 01:11:54 PM
Hi Diane

A warm welcome to the forum.
Title: Re:Grover's disease
Post by: BobC on Tuesday July 27, 2004, 01:39:49 AM
Diane, Kay

Thanks for the updates.

Kay I can relate to most of what you have metioned, but I am not aware of any current studies into Grover's. Like yourself this site has been absolutely brilliant for me, I don't know how I would have coped without the opportunity to discuss Grovers with the many others out there offering advice and suggestions.

My kids just call me 'Grover' after the cartoon !!!!

Diane,

Your marshallow thing sounds interesting, if it works for you all the better, Pintarsol and the calamine mixture (my previous posts) seem to work for me, by no means a cure but provides some relief.

Regards

Bob C
Title: Re:Grover's disease
Post by: JORGE on Saturday July 31, 2004, 06:27:02 PM
Hello!

I am from Colombia, and don't speak english very well, but I understand all your messages.

My derm said me yesterday that I have grover disease.

I have reviewed all the internet, and I have been Medicine does not Know practically nothing about this disease.

Then, I think this forum is very important and for me it is not impossible that trough our messages we can find some cure.

That is not absurd, because in actual medicine it is not known how drugs cures diseases.  Generally the cure is found accidentally.

I congratulet the managers of this club for give us this important forum for especulating about the causes and the treatments, and why not for find the cure.

I was very sad for having these disease.  But now I am very happy for having friends for trying to superate this disease.

Excuse me my bad english.

Thank you,

Jorge
Title: Re:Grover's disease
Post by: totalfolly on Saturday July 31, 2004, 10:01:12 PM
Hiya, Jorge, and welcome to SkinCell!

Excuse me my bad english.

Your English is perfectly fine, so please don't apologise--I speak only one language, so you're doing better than me!  :D

totalfolly
Title: Re:Grover's disease
Post by: Gobe on Saturday July 31, 2004, 11:09:28 PM
 :hi:

Welcome to Skincell Jorge!

 :)

Title: Re:Grover's disease
Post by: Jimbo on Thursday August 19, 2004, 01:49:20 AM
Kit
I was very interested in hearing about your friend's experiences with bioidentical hormone treatments. Any new info on that? I asked my derm about it today, but she's never heard of it. This is something that perhaps deserves the attention of all Grovers sufferers.

Jimbo
Title: Re:Grover's disease
Post by: kit on Thursday August 19, 2004, 12:01:23 PM
I have tons of info and have talked to several doctors. I have two more appointments coming up this month and then after that I will decide how to go.I am surprised your doc has not heard of them as they have been around for over 50 years. From what I have read and been told by several docs the drug companies are against bioidentical hormones becasue they can not be patented ...thus ...they make no money. We all knwo the engine that runs the medical field is money. BH"s take a bit more work by the patient and the doc as you have to have them compounded just for you and then adjsuted until you find what works right for each individual. It is more work but I am told by so many people around the country that the pay off is tremendous. I am really cynical when it comes to things like this..but fortuantly I have strong contacts in the medical community. The emails I have gotten from people out there has been so positive about BH's and how it has "changed their lives and given them back their lives" that it has certainly peaked my interest. I like the fact that they are natural and actually replace the lost hormones not treating symtoms. But again...my jury is still out. I have found great relief through Efudex, Soloraze and carac for my grovers ( systemically). They have been miraculous for me. I have had grovers for many, many years and tried everything under the sun with littel or no relief.  I have been to some of the leading medical institutions for this as well with no real help.I did stop using all drugs recently to see the result. My grovers did come back. So I am not sure what route I am going to go but I certainly am leaning towards giving the BH's a try--after all they seem safer from what I have learned. Also the immune system link that ken talked about, I agree with. BH's are suppose to put your immune system back to what it was in your 20's or so. I have never met anyone with grovers that was younger--it seems to always be 35 or older.  So what the heck..It is another avenue to go down.God knows I have been down a lot of them as I am sure we all have. I certainly will keep you all posted if I do the BH's. Happy Grovering!!!!
Title: Re:Grover's disease
Post by: JORGE on Friday August 27, 2004, 09:59:32 PM
Hello everybody!

As I have told you, I have been using loratadina 10 days ago, and inmediatly I became better.

And 5 days ago, I tryed one old cream I had in my bathroom, that I have used several years ago for another illness called kenacomb.

The next days I was better and better, and today, I went to the dematologist, and he was surprised and ask me wath medications I had used.  I told him that loratadina and kenacomb, and he said me that I was almost cured, and that continue using this two medications for one additional month.

I know all cases are different.  But I wait my experience be usefull for somebody.

I advice you to read all my case in the recent messages.

Greetings,

Jorge  :)
Title: Re:Grover's disease
Post by: peterb on Friday August 27, 2004, 10:02:32 PM
 :hi:cdale

A big welcome to Skincell.

Peter and Rosie.

 :)
Title: Re:Grover's disease
Post by: BobC on Sunday August 29, 2004, 05:18:04 AM
cdale,

Another big welcome from another with Grover's Disease.

A general question to anyone for some help, thoughts, possible links, sggestions if you can please,

I  developed another rash with a different appearance as well as having Grover's and Urticaria Vasculitis both confirmed by skin bi opsi's this test result (bi opsi)confirmed that I also have eczema.

Has anyone had a similar experiance, my grover's seems to be under control at this point in time with just minor flares occuring, my current med's are Predisolone x 10 mg x 2, plus Diprisone OV 30 g cream and Deptran 25 mg x 2, combined with my prevous posts of the calamine lotion mixture and pintarsal, these seem to keep grover's under control, likewise they provide some relief from the internal affects of the Urticaria Vasculities, pariot 20 mg x 2 also provide relief. Angina episodes have also reduced in recent times.

I completed an eradication program for helicabactor pilorii recently this reqired two repeat treatments but the follow up tests confirmed erradication.


I know this is a lot to digest but, I would be interested in any thoghts or opinions from anyone who thinks there could be a link between all on these.

Regards


Bob C

 

Title: Re: Grover's disease
Post by: Jimbo on Friday January 14, 2005, 12:51:27 AM
This message is for Kit. A woman that wrote to this forum numerous times and spoke of a possible cure for Grover's Disease with something called bioidentical hormone treatment. I was wondering if anything had come of that.

Jimbo
Title: Re: Grover's disease
Post by: kit on Saturday March 12, 2005, 12:37:22 PM
Jimbo

Just saw your note today. As far as BIH go I would suggest you talk to your GP about it. It requires blood testing before starting. I would not say it is a cure but a tool to manage the disease. I have had good results but also am using chemo creams which give me good results. Another thing I have noticed which has made a huge improvement is reducing the intake of refined sugars, white flour, white rice, and caffeine products. A few of my firnds arfe doing this " whole foods" planand everyone has reported postive results.
Title: Re: Grover's disease
Post by: boatboatboat on Wednesday April 27, 2005, 03:59:30 AM
I have just spent the last two hours reading every post in this thread. I can't believe all the complaining over a few bumps and a little itching........


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Now that I have your attention. I have now had Grovers for about a year. It is currently at it's worst. I have just stopped 3 times a week puva treatments after 3 mths. That seemed to make it worse. I have had 8 steroid injections, and every topical steroid cream known to man. It just keeps spreading and spreading and itching more and more. What started as a small area on my back is now  my whole back, whole chest both legs to the ankles and both arms to the wrist and my chest up to my neck. Thank goodnes, my face and private parts have been spared so far. Does grovers ever spread to the face? I am in sales and can't imagine how I would cope with that?

I have been reading comments about foods. What are the foods/drinks to avoid?

FYI did you know a bic pen cap makes a wonderful scraper to bust open the top of a bump till it bleeds?
Title: Re: Grover's disease
Post by: Trish425 on Wednesday April 27, 2005, 10:16:22 AM
I hate to tell you this, but I have had them on my face and they left little brown scars. Does anyone else have these brown marks after they heal up? I am concerned because this does break out on my neck, chin, and face besides my back, arms and chest! Because I am a woman, I can cover these spots with make up, but I feel for men that get them on their faces! Oh, and a ruler works great as a back scratcher!!!
Title: Re: Grover's disease
Post by: eureka07 on Friday April 29, 2005, 10:06:13 PM
New to forum, diagnosed with Grover's.  My dr. prescribed retin-a.  Seems to help some, but as soon as I get in the sun, or sweat, it flares up in a matter of minutes.  Is there any way to control this and be able to spend some time out in the sun?   ???
Title: Re: Grover's disease
Post by: jd1 on Thursday May 12, 2005, 08:35:48 PM
Hi Eureka07

Oh my.  Stay out of the sun.  I am convinced that the Grover's on my legs is easily controlled because I treated it as soon as it appeared and am now like a vampire with the sun protection.  The Grover's on my trunk never goes away, and I am sure that is due to the repeated assaults by the sun that I allowed, even after the rash appeared.  I had it for at least 8 years before it was diagnosed.  The sun protection thing is a drag at first, but you will get used to it, and you may even get to where you see others in the sun unprotected and think that they are nuts.  JD.
Title: Re: Grover's disease
Post by: nulrick on Thursday May 12, 2005, 08:55:06 PM
Does anyone know any statistics of the recovery rate for people diagnosed with Grovers?  What % recovers complettely as opposed to the % that has ongoing issues with it?
Title: Re: Grover's disease
Post by: DUKE on Thursday May 19, 2005, 01:19:01 PM
I have had Grover's for about 3 years, verified by skin biop.   Mostly on upper back and sholders.

Tried vitiman A.  Over counter creams. Calcipotriol cream.  Nothing cures the stuff.

Tried Aveeno anti ithc concentrated cream the kind in a small tube and the one in a small bottle with calamine in it.   Regular CALAMINE is good too.  These help.  Buy the stuff at WallMart.

Aslo used Selsun Blue as a soap type wash in the shower.  This seems to dry up the stuff, but long term ....no cure.

Going to see DERM soon.  Will ask about EFUDEX.  Sounds scary.

I am highly alergic to poison ivy.  My kids are too.  They are alergic to metal pants buttons, etc.  I was wondering if there is a connection.  Look at this site.  http://www.bio.umass.edu/micro/immunology/poisoniv.htm  This has a lot of technical info a good doctor or DERM might consider.   HELP !
Title: Re: Grover's disease
Post by: kit on Tuesday May 31, 2005, 08:59:28 AM
Duke
Be careful using Efudex as it is a powerful drug. Make sure you are watched by your derm while using it.

Kit
Title: Re: Grover's disease
Post by: Jimbo on Thursday June 02, 2005, 04:50:04 PM
In response to Nulrick's question, I was told by a derm that Grovers goes away on its own in 80% of the cases. I don't know how accurate that is. I think the people in this forum with Grovers would come from the other 20%.

Jimbo
Title: Re: Grover's disease
Post by: knothole on Friday June 03, 2005, 05:03:05 AM
Hi there I am new to this board but have follow it for the past 6 months.  As anyone here I too have Grover's.  I think I've had it for about 4 years now but was confirmed with a skin biop last year.  Had the biop the year before but showed nothing.

My rash is mainly on my chest, and two small areas in the middle and lower back area.  Up until last year it would come out about November and last till about April then go away.  I am now 52 years old Italian male with good olive skin tones.  As a teenage did a lot of surfing, and water skiing so have been in the sun a lot. 

This past year has been a very bad year with the rash and its itching, as you all know.  My derm put me on small doses of Accutane and it seemed to help some what but no great cure plus a cream Desoimetasone .05%.  The cream worked good on a small area but like always it came back.  I have be on and off the Accutane for about 7 months, take 40mg only on Monday, Wedesday, and Fridays.  This would go for a month then off a month then back on a month.  Using the Desoximetasone gel as a stop gap.

After a lot of complaining that it wasn't working I went on it for 3 weeks straight and the results were better but not great.  I will say other that the dryness I did't have really any problems of side effects.  Guess I was lucky.

As of now I am off the Accutane and the last 6 weeks (knock on wood) I have been fairly free of the rash and itch.  What I have been looking into to has been some of the Chinese Medicine theory.  Grover's is a rash coming from the inside and based on the Chinese theory it is a result of an internal heat.  Now, I not really into to all these things but I do still use some home remedies my grandmother passed down.  I figured I tried all the creams anti itch, Accutane, etc.  why not try this.  Well as I stated above I have been trying to eat foods and thing that will cool the bodies heat, which is the blood flow.  I don't know if it works but at this time eating cooling foods, some herbs, and some help from my derm.  I know I've read "you are what you eat" and may be there is something about that.

As for the sun and heat it does make it worse but the last few weeks I have been in the sun but not sun bathing but working and still have been ok. 

I wanted to share my findings with all of you since I have had 6 wonderful weeks of no major itching in hopes that it keeps going and something I have found my help someone.  Good luck to all.
Title: Re: Grover's disease
Post by: jls on Saturday June 04, 2005, 01:56:28 PM
Hi Everyone,
I am a new member. I found this sight when I was searching for info on Grover's. I was diagnosed 3 years ago by a biopsy. My Doc orginaly thought skin cancer.So I was releaved, little did I know what an ordeal I was in for.
When this started I had just a patch on in cleavage. It has since spred up my chest and neck. So the sun damage makes sense. I am fair skin which easly burns.
Their were several bad sunburns in my childhood.
After see some of the other posts, I see why my Doc keeps saying that my case is't that bad.
I am a 43 female,who never liked to sweat even before all this. I can tell you that sweat dose make it flare up.
So far hydrocortisone cream works the best for me. My Doc wants me off of it, having side efect of thinning skin, redness especialy on my neck. So we keep try different topical meds. Some have helped but none compare to the cortisone during a flare up.
It sure is nice to have somewhere to come to for advice/comfort. 
Title: Re: Grover's disease
Post by: Jimbo on Sunday June 05, 2005, 03:04:33 AM
Hi jls,
Sorry to hear about your Grovers. I've had it for 17 years now. My derm gives me a hydrocortisone cream that's only 2.5%. She claims it's safe to use, but I avoid using it anyway as much as possible. Instead I found a natural cream called Dermamed all-purpose ointment. It's not as effective as the cortisone, but works well when used on a regular basis. I don't know what country you're in. This is a Canadian company, www.dermamed.com. If you go to your local natural food store you may find something that works for you. It's just trial and error.

Good luck,

Jimbo
Title: Re: Grover's disease
Post by: wendianne on Sunday June 05, 2005, 07:30:56 AM
Welcome Knothole to SkinCell!

Hope to hear more from you, I'd be interested to know how well the new diet works.

Wendianne
Title: Re: Grover's disease
Post by: jls on Wednesday June 08, 2005, 05:36:33 PM
Hi Jimbo,
Thanks for the sugestion. I am in the US. Guess what the new med my derm. doc is actualy helping. It is caled protopic, I still itch a little, but not too bad. The grovers is clearing up and the redness is going away( side efect from the hydrocortisone cream). One down side of the protopic is that it is a thick clear petrolatum gel, that is a little hard to put on and to wash off. Which is good for the affected areas not my hands. I am going to get some make-up spounges to try. I also don't especialy like having a shiney neck and chest.  The things we will put up with for some relief.

JLS
ps: boy, does this site need spell check!
Title: Re: Grover's disease
Post by: bookbear on Monday July 25, 2005, 01:02:35 AM
Hello!

I am SO glad I found this forum...I've spent the last day reading all the posts here, and am both saddened that so many suffer so much with this, and gladdened that I and they are not alone with this.  The level of caring and support here is amazing.

I am a very fair-skinned white male, 56, living in southern California, and except for this in good health. Moderate b/p, well-controlled with atenolol. Very hairy (well....furry), I throw a LOT of heat, sleep only with a sheet in winter and nothing in summer, windows open and fans on. I stay out of the sun and wear only cotton clothing.  I was  diagnosed via biopsy earlier this year, although the condition has been extant for over 12 years.  Over those years, I have been on courses of erythromycin, tetracycline, Sporonox, prednisone; as well as every steroid cream and anti-fungal cream  known to medical science.  Three dermotologists and three GP's have essentially thrown up their hands.  The last Derm, though, *did* diagonose with no qualifiers.  The three earlier biopsies came back inconclusive (although I don't know if the labs were instructed to screen for Grover's or not).  This last one the doc specifically instructed the lab to look for the characteristics of Grover's. Bingo.  After reading everything I could find on line, I wondered about the diagnosis, since it is always described as being 'transient'.  Ha-bloody-ha!  >:(   After finding this forum and reading, I feel much more comfortable with the diagnosis....obviously it isn't unusual for this to hang on for years.

I have several questions.  I fully understand that people differ and that different patients may have differing sets of symptoms and respond differently, but.....

1.)  Both the sites I have read and the docs I have spoken with give differing suggestions for supportive therapies....one group says moisturinze, moisturize, moisturize!  the other group says use talc to keep dry!  This seem to be in direct conflict....keep it wet, keep it dry.  What's a bear to do?  Suggestions?

2.) Although I love long hot showers, I have given them up.  Short and cool now.  What do you all suggest as possible soap substitutes?  I have read to avoid scented soaps and other products and deodorant soaps, but what are some alternatives?  One Derm suggested Cetaphil lotion, but that never seems to get me clean feeling...I keep feeling I need to get back in the shower to rinse off again.

3.) Stress seems to be a common denominator for many Grover's sufferers.  I would describe myself as a 'recovering Type A personality'.  However, during the 12 year course of this affliction, I have had times of great calm and peacefulness....and the Grover's stayed the same.  I wonder if stress acts as a trigger but once it gets started, it takes on its own momentum.  Have any of you had experiences where relaxation did or didn't help with the disease?

4.)  Any homeopathic remedies besides the Calm Cream already mentioned?

Thanking you all in advance for any suggestions you might have!

Title: Re: Grover's disease
Post by: Jimbo on Thursday July 28, 2005, 12:53:16 PM
Hi Bookbear,
Welcome to the forum. I've had Grovers for 17 years now. I just wanted to comment on your questions. Although we all have similar symptoms, what triggers them may vary somewhat from person to person.

1. Personally I have found that talc helps me if I'm going to be out in the sun and sweating. I golf a lot and sometimes will douse myself with a medicated talc before dressing in the morning.

2. If you've been sweating shower as soon as you can. I have found that to be very important. If I don't shower or wait 4 or 5 hours before showering when I come home, it will usually be worse. I use a nonsoap cleanser such as Cetaphil or Spectrojel. I think they are easier on the skin.

3. I think stress will aggrevate most conditions. Why not try taking a yoga class or meditating. Whatever destresses you. See if that helps.

4. I've been to many alternative medicine people. None have helped. I live in Canada. I have found a cream here in the health food stores called Dermamed. It helps me. Otherwise I will very occasionally use a nonflorinated cortisone cream 2.5%. My derm claims I can use this every day without worry of side effects, but I try to use it very sparingly.

5. Avoid alcohol, coffee, tea. As well there seem to be certain foods that may trigger a reaction. You'll have to monitor that yourself. I've been on a special elimination diet for the last 4 months hoping that it might get rid of the Grovers completely. It hasn't, but it has helped significantly.

Good luck,

Jimbo
Title: Re: Grover's disease
Post by: DRB on Sunday August 07, 2005, 06:56:26 AM
Hi Everyone,
I was taking topical creams for my grovers, hydrocortizone 1/2 %, 1% 1ith aloe and primazone 2 1/2 % plus calamine with mild short term 1 to two hour success, Ciuld not sleefor more than an hour and half at a time. New derm 4 days ago put me on caccutane 20mgs twice a day for a month. There appears to be some drying of the eruptions, however the pritis and the burning of my trunch, neck and legs are still with me big time. He did give me a tgri cyclic antidepreeant since the side effect should knock out the pruitis. I dc that since i walked around with a knumb brain and itched anyway.Nothing seems to work for the pruitis. I'm hopefull in time the accutane will kick in and reduce the itchings. Anyone out there with a similar experience.

DRB
Title: Re: Grover's disease
Post by: spiky on Sunday August 07, 2005, 08:32:44 AM
 :hi: Hiya DRB, Welcome to Skincell!
- And a big Welcome :bighug: to other people who've posted on this thread and I've missed saying Hi to! :hugs:
- Do you think it could be the type of detergent you are using DRB? I don't know this illness so please forgive me if I'm repeating anything you've already considered, but I've read your other posts and the thing that sprang to mind was detergent or possibly a type of material (eg cotton etc) that you might be allergic to.
Anyway, like I said, I really don't know, but there are a lot of people who will have a better understanding and loads of experience, so please keep posting. I bet you're so tired. Wish I could help more! :hug:
Title: Re: Grover's disease
Post by: knothole on Sunday August 21, 2005, 06:03:36 AM
Update - Hi, all, still trying to cope with this wonderful rash.  As of now, like others I have been trying to see what happens with my diet.  I have noticed some red meat, like steak seems to cause more problems.  Also, starting to work on the idea of the internal heat.  A neighbor (has gotten me some herbs to control internal heat).  I must say I think they may be working.  Humidity seems to really kick things up.  Still like the sun and boating.  I was in 116 degree weather 2 weeks ago for 10 days and when the rains started i really started itching.  Took they herbs after about 3 days of the rash 3 times a day (cream did little to help) and after about 2 days things started to calm down and the rash started to fad.

Been having little flare ups every very days - but take again and it seems to say somewhat in check.  Still use talc daily and it also helps, better than cornstarch. 

This is not a cure but seems to be less rash and itching.  Will keep testing. 
Title: Re: Grover's disease
Post by: bookbear on Sunday August 21, 2005, 11:19:18 PM
Knothole, what herbs are you taking?   Here's hoping the improvement continues! :cf:
Title: Re: Grover's disease
Post by: knothole on Monday August 29, 2005, 04:39:22 AM
Bookbear, I really don't know what all the herbs are.  My neighbor's grandmother make this jucie or tea thing with them all mixed together.  He did say it is to clean out the toxins in the body and to work on internal heat.  I have been looking on the internet to find out more information on the Chinese theory of interal heat which is something about the yin and yang.  You may what to check this out.  This is how I got started with him.  Never thought I would do something like that but I'll do almost anything now to get rid of this rashy itch. 

I'll keep looking.  Need to learn more.

knothole
Title: Re: Grover's disease
Post by: mpt on Saturday September 17, 2005, 11:46:18 PM
Hi all,

I'm new to the site.  Was diagnosed a 'couple days ago with Grover's after about two months of it going from a chaffed neck irritation to something much worse than all the photos I see of the condition on the 'net.  No improvement from steroid oinments, it continued to worsen.  I also tried antihistimines and that didn't seem to make any difference.  Have been using lotions and/or vaseline just to take the edge off the discomfort (inelastic, thin skin, but it seems like it's starting to get putrid on me, which doesn't bode well).  Will be going on Accutane (and hoping I won't end up with brain swelling--that's gotta hurt) pending results of baseline blood tests taken Friday.

I've probably had low-grade Grover's off and on for decades, undiagnosed, but that was pretty much a minor inconvenience.  I just thought it was the wages of sin, as it were (smoking, drinking), and genetics (history of skin problems on both sides of my family).  Would flare up with exercise, etc.  But the current episode, by comparison, is very intense, very lurid, and has spread--and has gotten to the point where my armpits and crotch are extremely uncomfortable when I walk or move around.

I keep thinking about the Biblical story of Job.  All these calamities are visited on Job, and then to really challenge Job, God visits him with...a virulent skin disorder.  (Someone around here has probably already made that joke.)  Oh well, at least I'm not dealing with homelessness or the loss of loved ones like our friends in New Orleans these past weeks....

This outbreak was precipitated by: high temperatures without air conditioning during non-working hours (and I'm a big nighttime sweater, even when not drinking), the ending of a really wonderful 18-month relationship and attendant stress/heartbreak (I'll live), heroic consumption of red wine due to ending of said relationship, relapsing back to cigarettes after a year as a non-smoker, craziness at work, and the fact that my mother was committed to a mental institution.  I think I may have been under stress.

Anyway, everybody's got their stuff to deal with, and I don't mean to whine--but I do anyway.  :-)

Nice to meet y'all.  I'll keep you posted if the Accutane works.  I think one of the problems about forums like this is that the people who get relief sometimes just leave and go about their business (kinda like people in AA who decide they don't need AA anymore, and just leave and stay sober--they never come back to check in for some reason, but it would be nice if they did--it'd be nice to know that they didn't die per the usual AA predictions)...so the people who remain are often the ones who got no relief and still suffer.  Which is fine, except it may give a skewed idea of how successful a treatment modality actually is, since the anecdotal stories would tend to be from people for whom treatment didn't work.

Anway.  Sorry to ramble.  Thanks.

Michael
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 20, 2005, 05:59:38 PM
Hi Michael, Welcome to this website, although I am sure that you wish that you didn't qualify to be here...  Your comment about people never posting again after they have found relief prompted me to reply.  My disease is still with me in full force, but I seem to be managing better, so I will pass on the information in case any of it is helpful.  I wasn't going to post until next April, after I tested the processes during very stressful work time, so some of this may be premature.

A while ago I read something about skin being our largest organ, and the average person puts some 120 different ingredients on it each day.  I decided to simplify and treat my skin with respect instead of just bombarding it with stuff.  There is no way my skin can take 120 ingredients.  I use a soap with 4 ingredients, 2 of which are aloe vera and oatmeal.  I moisturize with organic jojoba oil.  The shampoo that I switched to has quite a few ingredients, but they are all organic.  I can't do much about the number of ingredients in sunscreen, but it is "chemical free" and most of the ingredients are also organic.  I use Retin-A full body a couple of times a week and a good slather of Solaraze once or twice a week.  Of course, I figured out a couple of years ago that cotton and silk are best, anything else can irritate.  Use of sensitive skin detergent for laundry is essential, and I have found the water filter on the shower to be quite helpful. 

But the most interesting thing that I have been doing since the beginning of the year is treating the disease with CO2 laser.  I go to the derm every 2 - 4 months and get the lesions zapped.  I try to slow the flare with the above care, but periodically I get it all cleaned up.  The CO2 laser treatment hurts, but it kills the individual lesions.  It's not pretty - it leaves tiny black scabs that heal over a period of a week or two, and then leaves these sort of pink spots that fade over time, but that you can see clearly after a shower.  I use organic aloe vera during the healing process.  It may not sound so great, but it is such a relief!  The first time I did it I had 500 lesions on my trunk.  Most recently, after about a 3 month hiatus, I had 196.  I take relief in knowing that I don't have to endure 500 active lesions again.  My whole attitude toward this problem is so much better - as I see the disease forming, I know that the life of each lesion is limited.

The insurance co has balked at paying up (what a surprise!).  My insurance carrier referred the issue to Blue Cross. Blue Cross denied treatment.  I followed up by asking them what exactly did they think that I should do, considering that I have done EVERYTHING except a couple of drugs with serious systemic side effects that are contraindicated for me.  The derm at Blue Cross actually told the nurse that I spoke with that I should be meticulous (which I found infuriating, considering the effort I put into taking proper care) and that he didn't want to approve this appeal because if he did, it might open up the use of CO2 laser for other inflammatory conditions.  To restate, his objection wasn't that the idea was ridiculous, it was that the insurance co might have to pay for such treatment of similar cases.  Anyway, I may have to sue under ERISA.

Finally, I must pass on something that a friend said to me when I was drinking like crazy in a very stressful situation.  She told me to quit poisoning myself and then helped me come up with concrete plans for setting boundaries in the stressful situation.  Please stop poisoning yourself.  Even if cigarettes and world class red wine drinking don't affect the skin (and they probably do), you know it is bad for your spirit.  You do not need to poison yourself.

JD
Title: Re: Grover's disease
Post by: mpt on Saturday September 24, 2005, 07:23:59 PM
Thanks for the welcome, JD.

Point taken on the self-poisoning.  So far I've drank once since taking the accutane, and that's not something I'm anxious to repeat.

Sorry to hear about your problems with insurance coverage.  It remains to be seen whether my insurer will play the same games, but hopefully that won't happen.

After about five days on 40 mg accutane once daily, I'm starting to see some marked improvement.  Other than tiredness that is more likely a function of waking up early and being unable to get back to sleep because of the discomfort of the Grover's, no side effects to speak of so far.

Your post reinforces the idea that this isn't something that is simply treated once and cured.  Obviously I'll need to continue making lifestyle changes if the Grover's is going to be held in check.

I'm just very glad for the combination of marked improvement and lack of side effects.  Hopefully the progress I've experienced so far will continue and the Grover's will go into complete remission.

Thanks again for the welcome.

Michael
Title: Re: Grover's disease
Post by: eureka07 on Sunday September 25, 2005, 02:12:36 AM
Hi Michael, Welcome to this website, although I am sure that you wish that you didn't qualify to be here...  Your comment about people never posting again after they have found relief prompted me to reply.  My disease is still with me in full force, but I seem to be managing better, so I will pass on the information in case any of it is helpful.  I wasn't going to post until next April, after I tested the processes during very stressful work time, so some of this may be premature.

A while ago I read something about skin being our largest organ, and the average person puts some 120 different ingredients on it each day.  I decided to simplify and treat my skin with respect instead of just bombarding it with stuff.  There is no way my skin can take 120 ingredients.  I use a soap with 4 ingredients, 2 of which are aloe vera and oatmeal.  I moisturize with organic jojoba oil.  The shampoo that I switched to has quite a few ingredients, but they are all organic.  I can't do much about the number of ingredients in sunscreen, but it is "chemical free" and most of the ingredients are also organic.  I use Retin-A full body a couple of times a week and a good slather of Solaraze once or twice a week.  Of course, I figured out a couple of years ago that cotton and silk are best, anything else can irritate.  Use of sensitive skin detergent for laundry is essential, and I have found the water filter on the shower to be quite helpful. 

But the most interesting thing that I have been doing since the beginning of the year is treating the disease with CO2 laser.  I go to the derm every 2 - 4 months and get the lesions zapped.  I try to slow the flare with the above care, but periodically I get it all cleaned up.  The CO2 laser treatment hurts, but it kills the individual lesions.  It's not pretty - it leaves tiny black scabs that heal over a period of a week or two, and then leaves these sort of pink spots that fade over time, but that you can see clearly after a shower.  I use organic aloe vera during the healing process.  It may not sound so great, but it is such a relief!  The first time I did it I had 500 lesions on my trunk.  Most recently, after about a 3 month hiatus, I had 196.  I take relief in knowing that I don't have to endure 500 active lesions again.  My whole attitude toward this problem is so much better - as I see the disease forming, I know that the life of each lesion is limited.

The insurance co has balked at paying up (what a surprise!).  My insurance carrier referred the issue to Blue Cross. Blue Cross denied treatment.  I followed up by asking them what exactly did they think that I should do, considering that I have done EVERYTHING except a couple of drugs with serious systemic side effects that are contraindicated for me.  The derm at Blue Cross actually told the nurse that I spoke with that I should be meticulous (which I found infuriating, considering the effort I put into taking proper care) and that he didn't want to approve this appeal because if he did, it might open up the use of CO2 laser for other inflammatory conditions.  To restate, his objection wasn't that the idea was ridiculous, it was that the insurance co might have to pay for such treatment of similar cases.  Anyway, I may have to sue under ERISA.

Finally, I must pass on something that a friend said to me when I was drinking like crazy in a very stressful situation.  She told me to quit poisoning myself and then helped me come up with concrete plans for setting boundaries in the stressful situation.  Please stop poisoning yourself.  Even if cigarettes and world class red wine drinking don't affect the skin (and they probably do), you know it is bad for your spirit.  You do not need to poison yourself.

JD

Title: Re: Grover's disease
Post by: eureka07 on Sunday September 25, 2005, 02:14:03 AM
The Co2 laser that you reply about, is this freezing?
Title: Re: Grover's disease
Post by: jd1 on Monday September 26, 2005, 08:47:51 PM
No, I think you're talking about liquid nitrogen, a treatment for warts.  I asked for liquid nitrogen a long time ago.  I was told that it would take way too long.  Have you ever had a wart removed w/ liquid nitrogen?  They apply it and then hold it there.  It really would take forever.  CO2 laser is really fast.  ZAP - ZAP - ZAP.  Unfortunately, each zap hurts.

I asked the nurse who treats me, here is a quote from her email:  "basically, the CO2 vaporizes the lesions while stimulating an inflammatory repsonse - that's the mechanism of action in a nutshell" 

I don't understand the mechanism exactly.  I'm sure that there is info online.  Bottom line is that it is destruction of lesions.  I'm sorry I can't be more help than that. 
Title: CO2 Treatments
Post by: Jimbo on Tuesday September 27, 2005, 01:21:10 AM
I guess the big question JD1 is do the lesions return or can the lesions return to the same place where you were zapped with CO2. If they do then we're talking temporary relief. If they don't were talking possible cure. Which is it?

Sincerely,

Jimbo
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 27, 2005, 09:51:35 PM
Jimbo, I have no idea.  Unless I were to mark each destroyed lesion with a pen, and then remark that spot as the pen mark wore off, how would I know if a lesion ever returned to that exact spot?  The disease is all over my trunk, sometimes on my shoulders and thighs.  (Although not bad enough for me to bother w/ CO2 there).  Point is, who has the time or inclination to mark all of that???  I do not consider this a cure and am sorry if I mislead you.  I am being treated every 2 - 4 months, with my own hope of learning how to control the flares enough to stretch it out to every 4 - 6 months.  I consider it a way to control the progression of the disease.  Again, I take great relief in knowing that there is a way for me to avoid having to endure 500 active lesions.
Title: Re: Grover's disease
Post by: mpt on Saturday October 01, 2005, 01:48:40 AM
Well, despite ongoing stressors and failed good intentions re drinking, I'm seeing some marked improvement via the accutane, so I guess I'm maybe part of the lucky majority that sees improvement without the downside of major side effects.

The lesions are still pretty ugly and red, but are drying out, flaking/healing, and suchlike, and are less raised and red (and much less uncomfortable) than before.

I'm experiencing some depression alternating with anger, but that is more likely part and parcel of my current life experience and prior history with depression (and emotional self-medicating with alcohol) than being due to any side effect of the medication.  I know if I told my dermatologist about it she'd yank me off the medication, so I intend to keep it to myself.  Sometimes we are depressed for a reason, and I have a few.  And I can't think of anything more depressing than a future of being physically repulsive and unable to climb back on the dating horse, as it were, and try again.

I'm not going to win any beauty pageants (not that I would without the Grover's), but my comfort level has improved (today I went most of the day without having to apply Cetaphyl after the usual post-shower, morning application).

Some oral dryness, but nothing dramatic, and I keep it in check with Biotene toothpaste and mouthwash.  Haven't even had to use the lip balm that the physician's assistant to my dermatologist assured me I would need.

Interestingly, during a stress reaction from correspondence with my ex-girlfriend, I noticed that the skin on my arms (where the Grover's is the worst) felt like it was going backwards fast, just as I noticed during the initial outbreak that stress (and smoking) tended to give my skin a distinctive feeling that is no doubt an indication of a worsening effect from Grover's--I think that's why the drinking doesn't seem to make it flare (because alcohol dialates, rather than constricts, blood vessels), whereas stress does, because it seems to have something to do with blood flow and/or adreneline.  This is just my impression--nothing scientific to it.

Hopefully the combined load on my liver won't be an issue, come the first montly blood sample.  Or the p***-poor diet, either--hopefully it won't elevate my heretofore very lucky (for a 49-year-old with not the best diet) colesterol readings.

Anyway, I hope this finds each and every one of you experiencing hopeful and/or improved experiences re this pain-in-the-rear disease.

Michael
Title: Re: Grover's disease
Post by: mpt on Tuesday October 04, 2005, 01:18:15 AM
Another update.  The pre-existing depression arising from the breakup escalated dramatically.  I don't know how much of it had to do with the accutane, but the dermatologist recommended stopping it for awhile to see if my mood improves (she also recommended getting psych help and meds, and I will take her up on the former suggestion at least).  Given that my ex-girlfriend told me this morning on the phone that, although "it's unfortunate," she doesn't want me in her life in any way/shape/form anymore, so I'm having the worst week in my life.  Obviously the drinking was fuel for the depression, for my girlfiend's decision--and probably for the nausea that I've been feeling the past few days.  Don't get me wrong, I've had enough experience drinking to know how much I can drink without getting nauseous, but (although my dermatologist is somewhat skeptical that accutane had any role) I think the the ungodly stress, smoking, poor diet, drinking...and now accutane...are causing these flu-like symptoms.  OK, well, I may be stupid enough to drink excessively enough to get me to this point, but it's time to hang it up, at least for awhile.  I'll just have to deal with everything sober.  Then in a few days I'll chat with the doctor's assistant and see if we want to resume the accutane at a lower dose.

Sorry if this seems to have more about drinking and heartbreak than accutane.  All I can say is, feel free to use me as a great example of how *not* to approach treating Grover's.

The condition seems to improve for awhile, and then the stress hits a critical mass that causes it to flare up.  I can *feel* it start up when the stress gets so bad that my arms start to feel like the blood flow is contricting dramatically.  So once I get a few days sans alcohol, I guess it's time to think about stopping smoking again.  Right now it's one second at a time, emotionally.

As they say in AA, thanks for lettting me share.

Michael
Title: Re: Grover's disease
Post by: Celery Peach on Tuesday October 04, 2005, 03:27:59 PM
 :hugs: Michael, I am really sorry to hear what a difficult time you are going through right now. Take good care of yourself  :hugs:



Title: Re: Grover's disease
Post by: mpt on Friday October 07, 2005, 02:42:33 AM
:hugs: Michael, I am really sorry to hear what a difficult time you are going through right now. Take good care of yourself :hugs:

Thank you very much.  I managed to not drink for the past few days, and am trying to distract myself as much as possible until the pain subsides to manageable level.

Thanks for the hugs, much needed.

Michael
Title: Re: Grover's disease
Post by: needs_help on Friday October 07, 2005, 02:48:45 AM
 :bighug:

Good to hear things are going well!!
Title: Re: Grover's disease
Post by: Celery Peach on Saturday October 08, 2005, 06:42:47 AM
 ;D Good on you Michael for taking control of your drinking ! I hope that it will get easier for you as time goes on.  :hugs:

Hows your skin doing ? Is the Accutane having any effect yet ?  :hugs: Just my opinion, but I think you would do best to keep your cigerettes for a while as you are stressed, deal with one thing at a time eh ?

I'm on Acitretin which is similiar to Accutane, its raised my cholestral unfortunately, but I have managed to lose a few pounds and get cholestral down, its a constant battle tho. I just love to eat all the wrong things even tho I know better  :-[ I could offer you a few basic diet tips if you'd like  :) At the very least Michael, get yourself a multivit to top up with  :)

Take care  :-*
Title: Re: Grover's disease
Post by: rangiputa on Monday October 10, 2005, 01:31:54 AM
I am a newbie and upon finding this forum this morning was both delighted  (so much information and I find  I am not alone) and dismayed ( to learn how severe it can be for some people) . I have just returned from 4 weeks in Africa where it was hot and I sunbathed most days  for short periods and had a breakout, one of the worst ever. Made an appoinment to see a skin specialist  and then  decided to search on the internet and found this forum.

I have had Grover disease for at least 24 years ( I am 53 yrs) , probably more. It was diagnosed though not biopsied in 1989. I only have it on the front of my trunk (where I used to bake myself in suntanning competiitions with my girlfriend under the brutal New Zealand sun) and am fortunate that it only breaks out a couple of times a year and rarely lasts more that a few weeks.
I was not aware that sweating was a trigger (thanks everyone) knowing that   will help me control it I hope. One thing I am sure does trigger it for me is chlorinated water. I hope this may help other people. Over 20 years of monitoring it and of living in homes with pure rainwater, untreated well water and chlorinated city supply  as well as chorinated swimming pools has left me firmly convinced that exposure to chlorine is a big factor. Has anyone else noticed this?? 

Has anyone found any natural remedies that help. I am not into conventional medicine so am not prepared to use accutaine or cortisone type stuff. (that said if it gets as bad as some people experience I would certainly consider them)  I have an aquaintance who runs an herbal medicine business and is very knowledgeable about skin problems. He has suggested after every bath or shower mist myself with a dilute  solution of cider vinegar in a spray bottle and lightly pat myself dry to leave a residue on the skin. He claims this is highly effective in many types of skin problems. Anybody tried this. Will report in a few weeks as to how it goes.

thanks to all fro sharing their info
Title: Re: Grover's disease
Post by: jd1 on Monday October 10, 2005, 08:09:54 PM
Hi Rangiputa,

I burst out laughing when you mentioned sunbathing competitions.  Isn't it terrible to think back on the crazy things that we did to ourselves? 

To answer your question, yes, I have noticed that chlorinated water is horrible for me.  I have a filter on the shower.  Last time I went out of town, I actually decided that spongebaths were easier than dealing with the flare that would result from city water.  So you are not alone in seeing that as a trigger.

Good luck, Jessica
Title: Re: Grover's disease
Post by: myoz on Wednesday October 12, 2005, 03:04:12 AM
Hello everyone! Well after monitoring this site for approximately 2 months now, not only do I feel as though I know all of you but it's now my turn to post. I am a 38 year old female, a native of FL with fair skin/blue eyes. I have been a victim of  Grover's for approximately 15 years now :'( I have ALWAYS LOVED THE SUN! Unfortunately I am now paying the consequences so often threaten with by many Derm's, family & friends. Avoiding sweating is not an option as it is typically in the 80's-90's year round and not only do I work outside but also with water,  at temps of 110-120 degrees. I have managed to keep Grover's under control for at least 7 years , to the point that I forgot I even had it.  That is until now. My last major outbreak was back in the mid 90's ( my tanning bed days). After accutane and LacHydrin lotion... poof it was gone. This June I made the mistake of getting a horrible sunburn primarly on my stomach while lying on the beach. I immediately broke out in Grover's and since it had been so long and I actually forgot what it was, I made an appt. and a biopsy confirmed it. I got back on the Lac Hydrin...MISTAKE, it made matters much worse and for the first time it has spread to my legs and chest. I tried Clobex for about a week on my chest  which seemed to help and felt good,however was nervous about the side effects and stopped. The first derm prescribed Predisone so I fled and went to another. I am not anxious to be on steroids! My current derm has me on Tetracycline, a Glycolic wash and Salex lotion. It has calmed the Grover's down quite a bit, however it isn't gone.  I am on tons of vitamins & herbs, eat right and live a healthy lifestyle which includes excercize and little stress. I am to return to the derm in 2 weeks which will be a full month on the said treatment. I do not expect to be cured by then and was wondering if anyone has tried LASER RESURFACING?I plan on talking to my Dr. about this option but wanted some input by anyone who may have tried it.  I know as a last resort accutane works, but do not want to destroy major organs for the sake of my bumpy skin. I do not itch at all, and only did after the burn,which at the time was immpossible to calm. Thank God that's over.  My heart goes out to those of you still itching! Well I believe in communication, perhaps eventually together we will find a cure. As for the clorinated water....I'm out to by a filter, what the heck! I will keep you all posted ;) Grover Chick in FL ;D
Title: Re: Grover's disease
Post by: BobC on Wednesday October 12, 2005, 01:21:11 PM
Hi everyone,

I have not posted for a while allthough I have been monitoring.

I seem to have got a lot worse lately and was just wondering if others have had many if any complications or such from their initial Grover's Disease.

As per my previous posts I was diagnosed with Grover's Disease via biopsy 2 and a bit years ago, then Systemic Uticarial Vasculitis was also diagnosed followed by some Eczama and Foliculitis confirmed via biopsies. Several heart attacks, various GI problems and similar all seem to be related to the vasculitis and the underlying immune system problems that have affected me.

Prednisolone and various other medications, lotions and similar seem to have taken over my life in just trying to  control the various outbreaks and just trying to gain some relief from the constant itch and agrivation of my skin which is an hour x hour and daily / weekly challenge.

My doctor and dermitologist concurred about what has been happening to me over the last couple of years and more particularly the onset of joint aches and pain (the last few months) and refferred me onto a Rheumatologist as my latest biopsies have confirmed that Grover's Disease, Urticarial Vasculites and foliculitis are still very active, but the biopsies also indicated that Psorisis has appeared on some parts of my anatomy.

I no this is a bit long winded but I would be intersted to no if others have experinced complications or progression from or with Grover's Disease.

Regards to,

BobC
(a  battling Aussie just looking for help)
Title: Re: Grover's disease
Post by: BobC on Wednesday October 12, 2005, 01:26:08 PM
Hi all (again)

One thing that I forgot to mention and would appreciate any feedback is that my Dermatologist and Rheumatologist have started me on Methotrexate, I must admit I have been a bit nervous about this, but nothing else seems to be working.

Regards,

BobC
Title: Re: Grover's disease
Post by: jd1 on Wednesday October 12, 2005, 04:14:33 PM
Hi Bob,

"...and the underlying immune system problems that have affected me..."  I have wondered if my skin prob is related to my ANA, which has been tested 3 x and has ranged between 1200 - 5200.  Supposed to be under 40.  Not sure of the implications.  Perhaps we have immune imbalance in common?

I'm sorry things aren't going well.  It sounds really stressful and uncomfortable.  Best wishes.  JD.
Title: Re: Grover's disease
Post by: mitch itch on Tuesday October 25, 2005, 09:21:30 PM
Long time reader, first time writer (isn't that a cliche!!).   Noticed my first "bump" in February of this year.  Eventually found out it was Glover's thru a biopsy.    :-\   I use Clobetesol, which immediately stops the burning itch and only have to just barely touch it with the cream to make it stop, but it often comes back about 8 hours later.   

The thing I notice is that I only get about 4 or 5 new ones each day and that the burning starts prior to even seeing the bump.   If I get one on the right calf, I usually get one on the left calf.  If I get one on the back of the right hand, I usually get one on the back of the left hand, etc. etc.   Also, the burning itch is at it's worse about 8 a.m and again about 8 p.m.  Not every bump itches at those times.   Some have mild itching and some nearly take your breathe away when you touch them.    I suspect I have a relatively mild case, since at any one time I never have probaBly more than a dozen spots that need treatmeat and often only three or four. but I have nothing to compare it to.    I work with doctors in a Haiti mission once a year, know many other doctors thru a free medical clinic where I volunteer and also thru a retirement center where I am on the board.   NONE of them (including the Gerontologist) have ever heard of Grovers and aree often only mildly interested which I find interesting in and of itself.   My dermatologist is very sympathetic and says he doesn't want to use Accutane or some of the other systemics unless necessary and says the Clobetasol is the best for now.   I get a liver function test every quarter because of Cholesterol meds so I'm tracking that.   Anyone out there have any comments about my observations or do any of you experience some of these same symptoms?

Currently, I have two or three spots on my hands, arms, and legs, many on my back and a few on my feet and chest.    Have never had any in my scalp, on my face, butt or genital  area.   Comments????  Thanks,   

Mitch Itch
Title: Re: Grover's disease
Post by: mitch itch on Friday November 25, 2005, 05:25:40 PM
About two weeks after my last posting, I had a terrible outbreak and my whole body with the exception of my face (and it is beginning to itch like crazy--which is usually the precursor to an outbreak) and genitals.   Even my butt.   So I don't think this is sun exposure related.  In fact my dermatologist suggested I might be lacking in Vit D.   

This stuff is very unpleasant, as you all know.    Itching, then breakout, then burning sensation, especially starting about 5 or 6 in the evening and intensifying until bedtime.   By 10 p..m. I am burning all over.   I have attempted to use the Aveeno Conc. Anti-itch or Benadry cream only rarely during the day and save the Clobetasol for the intense stuff at night.    At 10:30 I have my wife put a light film of it on all spots just so I can fall asleep.    Around 3 or 4 I am up dabbing some Aveeno or Benadryl on a few spots that have gone crazyand wakened me. 

Some questions:   

Anyone else suffer from familial or essential  tremors?  I've had them for many years and wonder if there is a connecton.

Do others experience itching in a area even before a red spot appears?

Mine then continue to itch for up to 2 weeks before breaking open, oozing a clear fluid, crust over and then get very hard with a crust that lasts for months and continue to itch?  Ofter there is light bleeding, also and the sheets are a bit messy sometimes in the mornings.

Anyone had burning and swollen lips?

How about the scalp?   mine itches like crazy in the evening.   

I also am developing some small (dime sized), rough,  red, itching spots on the top and sides of my feet and in my groin that are unlike the typical Grovers eruptions.    Anyone else have this?

Has anyone seen the article published by the Dept. of Derm. at Columbia by Paul Dantzig about the relationship of macular degeneration and measurerable blood mercury levels in Grover's patients?

I'm getting frantic here, folks.    :-\

Mitch Itch.
Title: Re: Grover's disease
Post by: Jimbo on Saturday November 26, 2005, 02:57:25 AM
So sorry to read about your condition Mitch. I've had Grovers for over 17 years now, but mine appears to be more tolerable than yours. It's a tenacious condition. For close to 9 months now I've been on an elimination diet that has helped control the disease. You might want to consider something like that.

Jimbo
Title: Re: Grover's disease
Post by: mitch itch on Saturday November 26, 2005, 03:09:25 PM
Thanks, Jimbo.    I've read your postings.   You look young and must have gotten the disease when very young, if you've had it 17 years.   

I would like to hear more about the elimination diet.   Have you found specific food groups that aggravate the condition?    Please don't tell me dark chocolate is one of them---don't know if I can live without that.

By the way,  for those who don't know about the tremors, it is an uncontrollable shaking of the hands and head.   I've had it (first in the hands) since college and assume it is genetic since my mother had it severely in later life and now a sister and two brothers have it, which they also got in later life.

Another question I might have added to the last posting would be about metabolism.   I am warm most of the time and sleep with only a sheet.  Wonder if body heat has anything to do with Grovers?

Mitch Itch.
Title: Re: Grover's disease
Post by: BobC on Sunday November 27, 2005, 12:26:28 PM
Hi Mitch Itch,

I can relate to most of what you are going through, particularly the pre burning sensation before the appearance of an outbreak in a particular area, likewise with the red blotch type crusty outbreaks that seem different to Grover's. I have had grover's disease as an unwelcome part of my life now for about 2 1/2 years of hell.

I to seem to have non routine grover's rash appearances as well, (butt, genital area, legs, etc), some of my previous posting go into a bit of detail re my back ground, associated conditions and treatments.

I am affraid the elimination diet did not work for me, 3 months on a supervised elimination and then 3 months monitoring on a  re introduction process with no real results.

Similar to yourself I sleep with only a sheet and only bath in warm bath or shower, I soak in salt water (the beach most days) this seems to provide minor relief, but as you mention night time is the worst for me. I can relate to the dirty sheets and pillows from the blood spots and similar, not pleasant. Likewise with my scalp a real mess !

I have not read the article you mentioned, could you please provide some further guidance as to its web address ? thanks for the info on the tremors, no I have never had them.

Hang in there and keep posting, you will find a health proffessional, interested in Grover's and prepared to help (they are out there it is just a matter of finding them.

I can also relate to the swollen limbs, joints etc, I have just had a further bit of bad news in that I have been diagnosed with Psoriatic Arthritis, just something else to keep me on my toes.

Bob C
Title: Re: Grover's disease
Post by: BobC on Sunday November 27, 2005, 12:37:47 PM
jd1

Sorry that I have not replied sooner, I have been unwell and not even interested in getting on the computer.

My Rheumatologist, Dermatologist and GP have now worked out that I also have Psoriatic Arthritis, the have upped the dosage of Methotrexate to try and control this as well as everything else, I did notice somewhere on a site that I visited that Methotrexate is also used sometimes to treat Grover's Disease.

I am not sure what my ANA count is but I will ask when I see my Rheumotologist again, everyone seems to agree though my imune system seems in a real mess.

Regards,

BobC
Title: Re: Grover's disease
Post by: Jimbo on Sunday November 27, 2005, 03:14:10 PM
Hi Mitch,
Here is the elimination diet that I was on. Actually I ended it last night after nine months. I think in order to see results you need to be on it for 4 to 6 months. That was my experience. It will mean the end to dark chocolate for a while I'm afraid. Here it is.

Foods to eliminate on this diet

1. Flour (no matter what kind)
2. Flour products - bread, cake, pie, spaghetti, pizza, noodles, etc.
3. Coffee (including decaf), tea, cocoa, liquor, colas, and all soft drinks
4. Sugar, candies, ice cream, and all artificial sweeteners
5. Jellies and jams
6. Canned or processed foods
7. Jellos, custards, puddings
8. Frozen fruits
9. Any food manufactured or adulterated by man (breakfast cereal, quick cooking oatmeal, etc.)


First Day
No food - water only - complete fast except for water, drink only when thirsty.

Second Day through Fourth Day
Raw, fresh vegetables and fruit (this includes juices). Repeat - raw, fresh only (avoid citrus fruit in active arthritis).

Fifth Day through Seventh Day
Add to raw fruit and vegetables:
1. Seafood - all kinds - fresh or frozen (no fish cakes or prepared fish dishes). Cook as little as possible.
2. Mix 1 tbsp of blackstrap molasses with 1 cup of hot water at least once a day.

Eighth Day through Fourteenth Day
Add:
1. Liver, heart, kidney - cook as little as possible.
2. Fruit and vegetables may be cooked, however as little as possible.
3. Natural cheese - no processed cheese.

Best Foods
Fresh leafy vegetables, greens (turnip, mustard), squash, kale, cabbage, spinach, broccoli, brussels sprouts, cauliflower, apples, strawberries, watermelon, cantaloupe, bananas, avocado, nuts and seeds, eggs, liver, sweetbreads, kidney, heart, seafood, Brewer's Yeast.

Good luck,

Jim
Title: Re: Grover's disease
Post by: mitch itch on Sunday November 27, 2005, 05:59:15 PM
 :)  Thanks, Jim and BobC for your responses.

Jim that diet is intimidating.   I have an appointment in a couple of weeks with my dermatologist and will be interested to see what he has to say.   I will be interested in knowing how you fare now that you have gone off the elimination diet.   

BobC, I have read your posts over the past months and know what a tough time you have had and wish you well.   Your outbreaks sound much like mine.

I am convinced this is a systemic thing and really has nothing to do with sun exposure over the years.   What puzzles me is why there hasn't been more research on the disease--guess there aren't enough people with it to warrant the expense by a pharmaceutical firm and Gawd knows they won't do it unless it is profitable for them or the CEO's mother has the disease. 

BobC, the Keywords to link up to the site for the study are:   Age related macular degeneration:
Grovers disease; Mercury; Signs or muercury toxicity   all on Google.  Or try Taylor and Francis Group.  I would type in the http, but it's a hummer.     If you can't locate the site, let me know and I'll work on it further.   Actually, what I typed into Google was Grovers Disease research and then linked onto Age related macular degeneration and cutaneous signs of Mercury toxicity.
  Hope you are all having a relatively itchless day.     

Mitch
Title: Re: Grover's disease
Post by: BobC on Monday November 28, 2005, 10:14:16 AM
Mitch,

Is there such a thing for us as an itchless day, I cannot remember one for a while any way, pardon my cynicism.

Thanks for the info on that site I will give it a try.

Jimbo's elimination diet is very similar to what I went through, totally gluten free, etc, etc, in total I was on this and the reintroduction of different food types for about six months, at the end it did not return any real fantastic conclusions, except I would have to say that I eat a lot more healthier than I used to.

All of my medical support people including GP's, Derm's, Rheum, Cardio, Gastro, Allergist, Consulting Physicians etc seem to think that all of my problems are of a systemic nature related to my immune system.

I have had to take up a medical retirement option from employment as I just could not keep going like I was, I had about fourteen months of on sick leave before I was medicaled out, since then we have moved to Queensland (in Australia) mainly to see if the climate change would help with my medical issues, not a lot of change, but the quality of life is fabulous.

Regards,

BobC
Title: Re: Grover's disease
Post by: mitch itch on Monday November 28, 2005, 02:29:34 PM
Bobc

Man, you've had a rough time.  So sorry.

I know what you mean about no itchless days.    This morning is one of the worse mornings I've had in a couple of weeks--lots of new spots and some old ones carrying on just for the hell of it.   I was able to get an appointment with me dermatologist this Thursday due to someone else cancelling, for which I am grateful.   I have a dozen questions for him.

Queensland.   Yeah!   We spend three days there prior to 2 weeks in Papua New Guinea and then three days after, in August of '96.  What a fabulous experience in both areas.  Barrier Reef is incredible, outback (what we saw of it in a rental car), crazy night in a remote cabin waaaaayyyy back in a wooded area, neat little towns, etc etc.  P.G., especially during SingSing at Mt. Hagen, is one of our all time favorite trips. 

Anyway, if I learn anything new on Thursday I'll pass it on.

Ciao!!   Mitch
Title: Re: Grover's disease
Post by: mitch itch on Thursday December 01, 2005, 04:19:15 PM
Just came from the dermatoligist.  I had sent him a letter prior to the visit.   He came into the room, examined me and said from what I am seeing and what you are experiencing I think we are dealing with Pemphigus foliaceus rather than Grover's.    The symptoms are similar and only further biopsy studies ( immunoflurorescence and H & E) will tell for sure.   

He has started me on Predisone 40mg daily and wants to see me in two weeks.  It si treatable but variable in terms of longevity.    He suspects the foliaceus rather than the vulgaris variety which can really be devastiing from what I have read on the net. 

Briefly, for those of you who want the short course, the general information is:  the immune system mistakenly perceives the cells in the skin and/or muscous membrane as foreign, and attacks them.  These antibodies are called autoantibodies. The part of the cells that are attacked in pemphigus are proteins called desmogleins.   Desmogleins form the glue that attaches adjacent skin cells, keeping the skin intact. When autoantibodies attack desmogleins, the cells become separated from each other and the skin virtually becomes unglued.   The causes burn-like legions or blisters that do not heal.

Actually, even tho it sounds like a long recovery, there may be an end in sight or at least a lessening or control of the symptoms.    I am encouraged, but fearful, at the same time.   

Later.    mitch
Title: Re: Grover's disease
Post by: knothole on Thursday December 01, 2005, 10:04:02 PM
To all Grover friends.  Here is an update on my treatments.  Tried the herbs did some help but not great but did some itch control.  Back to the derm. the first of October and back on the Accutane.  40mg every other day for a month so 15 pills.  Didn't work.  Up it to one a day starting in November.  I also had a rash and bumps on my back that seemed to go away at night but would return in the morning.  Very itchy but a different type of feel than my chest.  He thought it was still Grover's so that was why he upped the pills to one a day.

My chest was doing better with the every other day but not the back.  Two weeks into the everyday pill taking and the chest was even better but the back was still bad.  I stopped the creams for the dryness and started using Natural 30,000 IU of Vitamin E (this a oil not a pill) and it help the bumps from itching and even seem to help.  If the everyday pills didn't help we were going to biopsy the back to see if it was something else.  Since starting the Vitamin E the back rash is going away along with the itching.  When to the derm yesterday and there was nothing to take biopsy.  Bumps on the back and do start to itch with a warm shower, so they a warm and quick and the itching seem to stop quick.  Put on the Vitamin E and seems to be OK.  The warm showers don't burn the back to much anymore.  Knock on wood!!  The derm. dropped the dosage back to one every other day and will go back at the end of December. 

I will have to say this has been the best 2 minimum itchless weeks on a very very long time.  I don't know if the Vitamin E helped but things started to change once I started it or was it the Accutane on heavier dosage finally kicking in.

I know everyone is different because even my derm said with most of the people he has treated I am A-typical.  Hope this helps someone.
Title: Re: Grover's disease
Post by: jd1 on Thursday December 01, 2005, 10:44:53 PM
Knothole, congratulations on the progress!

Mitch, as I was catching up on your posts I was wondering if you had something besides Grovers...I have been reading about this disease for several years now and yours sounded different.  I hope that you have something benign and easily treated.  Please let us know what the biopsy shows.  My first biopsy showed either Grovers, Dariers, or Pemphigus, so I guess those diseases must look similar.

I cannot find the article that you mentioned.  Can you provide any additional information?

I also believe that my disease is due to some systemic imbalance, but I believe that the manifestation as Grover's was triggered by sun exposure.  I watched the disease spread to my shoulders and legs on the second to last day of one of our family's trips to Hawaii.  I hadn't put it together at that point, and I had spent a good 8 days laying out in that sun...no more!

Jimbo, why did you quit the elimination diet?  Just curious.  I would not have lasted 5 minutes with those restrictions.

Bob, ANA is anti-nuclear antibodies.  As I understand it, in Lupus they attack the organs of the body.  I knew a lot about it a couple of years ago when I was worried about that.  I have forgotten a lot since then.
Title: Re: Grover's disease
Post by: mitch itch on Friday December 02, 2005, 01:41:18 AM
 :) I'm starting out with a smiley because it is 9:30 p.m. and I have had to put only a  bit of Benadryl Creme on one spot on one leg, some across my shoulders and the small of my back.   I haven't used Clobetalol all day and am relatively itch free.  Usually this time of night I am a wreck.    I even walked a mile this afternoon (Cortisone high?) in the cold and snow and loved it.   This is after only one dose of Cortisone 40 mg.    I shouldn't get too happy probably 'cause there is a long way to go on this, but dang it feels good to have some relief for the first time in 10 months. 

jd1:  To access the article in the Columbia Journal, try typing in Grovers Disease Research on Google, then link onto Age Related Macular Degeneration and Cutaneous Signs of Mercury Toxicity.   If that doesn't get you there, let me know and I'll copy and paste the site.
Title: Re: Grover's disease
Post by: bookbear on Friday December 02, 2005, 02:42:54 AM
Mitch and Knothole, congrats on the progress! :D :D  Paws crossed that it continues for you both.

Title: Re: Grover's disease
Post by: knothole on Friday December 02, 2005, 03:01:38 AM
BookBea and JD1 thanks you.  I too hope it keeps up.  Like Mitch says soooooooooo nice not to itch.  If thing keep progressing I may be off the Accutane in January.  I was off it for about 7 months before this last bout.

JD1, I to still love the sun but have toned it down some.  In my teens and early 20s I used to surf and then went on to boating.  I did have some sunburns but not a sun worshiper.  Most of my surfing time I used a wet suit because the water was normally cold.

I still water ski and most of the time it is in Lake Havasu, AZ.  Summer there are 105 to 120.  Actually I did quit well this year and it seemed a good sweat didn't bother me much BUT when it gets very humid and I stay damp it has seemed to really flare up.  Even in the cool weather I sometimes have flare ups.  Being in construction I do tend to sweat hot or cold. That's why I hope the Vitamin E helps out.  In research it supposed to help some on cell damage.  Who knows.
Title: Re: Grover's disease
Post by: jd1 on Friday December 02, 2005, 05:53:42 PM
Mitch, thanks for the info.  Got the article.  Very interesting.  For those of you who didn't buy it, a derm at Columbia University connected mercury levels, macular degeneration, and Grover's disease.  There were 14 people with Grovers, all of whom had positive blood mercury levels.  3 of those had "excellent response" w/ diet change and chelation.  Printed in Cutaneous and Ocular Toxicology, 24: 3 - 9, 2005.
Title: Re: Grover's disease
Post by: Jimbo on Saturday December 03, 2005, 03:09:23 PM
Glad to hear that you people are getting some postive results. I was on the elimination diet for 9 months. I had hoped it would cure me, but no such luck. When it became apparent that it wasn't a cure I decided to go off it. I've been off it for just a week or two now and my skin is noticeably a little worse. I think the main culprit is wine. I love a glass or red wine with dinner. I should note that my condition doesn't seem to be as bad as some of you. Granted I've had Grovers for 17 years, but mine only acts up and itches when I play sports and sweat a lot. Most of the red bumps unfortunately never go away, so it looks awful. I think I'm going to go out and buy some vitamin E cream.

Good luck,

Jimbo
Title: Re: Grover's disease
Post by: knothole on Saturday December 03, 2005, 05:02:26 PM
Jimbo, another thing that I found that gave me some temporary relieve from the itching was pure Tea Tree Oil mix with mineral oil (baby oil), or Vitamin E.  I liked the Vitamin E better now.  You just get a dropper and mix in the amount that works best for you.  Some time I just put on the Vitamin E and then put the Tea Tree Oil on top.  But it is faster when you get the right mix and do it once.  This is a trial and error set up.

knothole
Title: Re: Grover's disease
Post by: Jimbo on Sunday December 04, 2005, 09:45:54 PM
Knothole could you tell me again what sort of vitamin E you are using. Is it a cream or pure vitamin E in an oil base?

Jimbo
Title: Re: Grover's disease
Post by: knothole on Monday December 05, 2005, 02:06:11 AM
Jimbo, it it a pure Vitamin E Oil in an oil base.  This brand is 30,000 iu and is natural E it says pure enough to take orally but I just do it topically.  Get a natural E (d) as apposed to a synthetic E (dl) type.  It is a 2.5 oz bottle. 

Knothole
Title: Re: Grover's disease
Post by: jd1 on Monday December 05, 2005, 06:20:27 PM
hi everyone,

I want to pass on information in an email that I just received.  I sent an email to the doc that wrote the article that Mitch had mentioned.  I sent the email Sat, and he responded Mon am!  Here is part of what he wrote.  "I have seen many patients with Grover's disease and everyone had mercury in their blood and they all responded to diet and chelation wtih chemet.  Though many people have mercury in their blood due to the incredible pollution of the environment with this toxic metal, our studies have shown that people with Grover's have a predisposing damage to the basement membrane in the skin which apparently allows the mercury to enter the epidermis and create its toxic effect on the keratinocytes.  This damage is usually solar in nature but can also include other skin conditions including exzemas, dry skin, aging changes, etc...."

Interesting...
Title: Re: Grover's disease
Post by: knothole on Tuesday December 06, 2005, 12:02:15 AM
JD1, that sounds very interesting.  Do you have anymore info a what change in diet is used?
Title: Re: Grover's disease
Post by: jd1 on Tuesday December 06, 2005, 02:19:23 AM
No idea.  The article just mentioned no seafood, but didn't specify anything else.  I am just starting down this avenue.  I figured that first step was to test for mercury, did that this am.  You might want to buy the article, follow Mitch's instructions to find it, it costs $30.  It was very interesting.  Also, provides something to present to derm.  I feel sorry for mine.  There I was, again, with an article from a medical journal and 300 questions for her.... 
Title: Re: Grover's disease
Post by: Jimbo on Tuesday December 06, 2005, 02:57:00 AM
How did you test for mercury jd1? Did the test results show that your mercury level was high?

Jimbo
Title: Re: Grover's disease
Post by: knothole on Tuesday December 06, 2005, 02:26:09 PM
One problem I may have after reading about chelation is that it is not recommended for someone who has a hypothyroid, which is my case.  On a sea food diet won't have a problem there!!!.

Knothole
Title: Re: Grover's disease
Post by: jd1 on Wednesday December 07, 2005, 02:44:16 AM
Jimbo, I took the article and myself to derm and asked for the test.  Simple blood test.  I'm not sure when I will get results.  Assuming positive result (which we probably all have anyway due to pollution), not sure what next step will be.  Chelation sounds like a big deal, I read some stuff that indicated that the process can make a person feel bad, and I don't have time to slow down right now.  I will have to ask a lot of questions and do my own reading before jumping in.  Also, the alternative health people have their own ideas on how to address mercury.  I have found that the alternative stuff doesn't always work, but when it does, it is much gentler on the system.  Seriously, I may not be able to address this for several months, I have a huge work deadline a few months out that is all consuming.  Are you going to pursue this?
Title: Re: Grover's disease
Post by: Jimbo on Thursday December 08, 2005, 07:59:45 PM
Hi jd1,
I have an appointment with my derm on the 16th of December. I'll ask him about it then. Incidently I tried putting 28000 ui vitamin E oil on my skin morning and night for a few days. It made my skin worse. I've had the same problem in the past with putting vitamin A directly on the affected areas.

Jimbo
Title: Re: Grover's disease
Post by: knothole on Friday December 09, 2005, 02:10:52 PM
Jimbo, sorry to here the Vitamin E didn't help you.  I can't say it is a perfect cure with me also.  The Vitamin A (accutane) has help me but still isn't 100% cure with me also.  But I have had better luck since I have been on it to make the days easier to handle on the itching.

Hopefully, someone will find a cure or something that will help everyone.  Until then I think we must be our own researchers to see what works best for us and share it with other.


Knothole
Title: Re: Grover's disease
Post by: knothole on Wednesday December 21, 2005, 01:37:05 AM
Wishing everyone a Merry Christmas and a very ITCHLESS New Year :nod:!

Knothole
Title: Re: Grover's disease
Post by: mitch itch on Friday December 23, 2005, 12:27:05 AM

Well, I'm, back to ground zero, sorta.   Went to the Derm last Friday and got the surprising news (to both him and me) that the immunoflourescence study for Pemphigus folioaceous was inconclusive.   He had me cut back to 20 mg Predisone a day for this first week and then I am to go to 10 mg for a week, then cold turkey.  IF I start flaring again (which I have a little--not as bad as November was) then I am to go to a lab and have blood drawn and an antibody titer done on monkey esophagus and rat bladder (can't tell you the kidding I have taken from my adult kids about THAT).    :laugh:     Other than that I am on hold and have not gone in for the blood work yet, 'cause I'm not convinced it has flared enough to prove the autoantibodies are there in sufficient quantity to warrant it.   He still thinks it is PF, but says it could be a strange mutation of Grovers plus Nummular Dermititis.   I Googled the latter and darn if that doesn't sound more like what I have.    So, I'm back to the evening itches and using a film of Clobetasol when necessary.   

I have a sister-in-law and brother who have done the chelation thing, but don't remember why.  I'll have to ask them about.   I know it wasn't for a skin condition.   Maybe just for the hell of it, knowing them.    :)

Best of luck to you all.   Mitch
Title: Re: Grover's disease
Post by: jd1 on Saturday December 24, 2005, 02:25:48 PM
Hi Everyone, Happy Christmas Eve day....

Mitch, I burst out laughing when you said you had relatives who did the chelation thing, probably just for the heck of it. I laughed b/c it sounds just like something I would do...I mean, why not?  I am glad for you that the PF came up inconclusive.  Better than a positive result.  Best wishes.

I have some information that I think is very encouraging.  I got my blood test results finally yesterday.  I came up with 4 micrograms per liter, acceptable levels may be as high as 10 (per the lab report).  I was discouraged b/c I was hoping for something higher to correlate with this persistent state of my skin.  My derm's office simply said that my mercury levels were fine.  They don't seem interested in pursuing this.

So yesterday afternoon I sent another email (3rd one) to the wonderful doc who wrote the article that Mitch found.  I said that before taking this whole thing to my internist, I just wanted to know how much improvement I could hope for.  Can you believe that he responded this morning?  He said that he had a patient return with an "acute exacerbation" of Grover's and blood levels were only 1.5 micrograms per liter and he cleared w/i a week of restarting chemet 300 mg tid.  He said that if our skin is damaged and we are susceptible to mercury, that is enough to cause new papules.  Avoid all source of mercury and be careful w/ sun exposure.  He said he has treated about 30 patients this way and only 1 failed to respond.

I think we are receiving a nice Christmas present.  Doesn't this all make sense?  There is a connection to sun damage, which many of us had already figured out, but also an identification of some poison that causes our skin to not work propertly.  I am going to make an appointment with my doc.  I think she will go for it.  I will be the guinea pig.
Title: Re: Grover's disease
Post by: BAKEY on Tuesday December 27, 2005, 04:01:47 PM
Registered member

 Online

Posts: 1


    Re: Grover's Disease- no relief
« Reply #5 on: Today at 04:53:47 PM »     
This is a copy of my post to another Grovers thread on this site.
--------------------------------------------------------------------------------
I have had episodes of what 2 dermatologists have called Grovers disease for at least the past 20 years, since I was 55. Unlike many people they are not continuous and occur after long plane rides of 5 hours duration or more. Interestingly ALL such trips result in the irritating spots (plukes) appearing all over my torso. No other experience seems to trigger them.

I have found that taking a 10-15 minute bath in water to which I have added 2 caps (NOT cups!) of Chlorox cures the condition in 24-36 hours. It does not return until after the next long flight.

It may be that long exposure to low humidity causes the effect.

Perhaps this will help someone. I know how unpleasant the disease is and have not seen other mentions of this treatment
Title: Re: Grover's disease
Post by: skinnybonedog on Monday January 02, 2006, 05:21:30 PM
Hi All,

I am new here. I am a 40 year old female diganosed with Grover's last May by skin biopsy. I was pretty miserable for about 4 months and then it seemed to go away mostly. I first had symptoms starting in Dec of 2004. And oddly was almost symtom free during the hot summer months when sweat is more of an issue, only to break out again the same time this year....December. The first attack was worse as I itched in places I never had bumps and at night felt like my skin was crawling, would expect to wake up convered head to toe and found that the places in the night that had itched so bad had no rash. I had to take Benadrly at night to sleep. So I have been itchy and bumpy for about a month now but mostly on my chest with a few bumps on my arms, back and stomach. I was using the steroid cream the Derm gave me last year but it was not doing much. I found this forum back then when I was dignosed but didn't have anything to contribute at that time. Wanted to tell you all about something that seems to be clearing this up for me. It is called CalaGel and is for poison oak and things of that nature. It is clear and stops the itch on contact and now after using it for three days the rash on my chest where I am using the gel, is clearing up and going away. I got this stuff last year when I was in a panic to make it go away and I think because I was trying so many things I had no idea what worked and what did not. This time it is clear to me this stuff helps. I only use it twice a day.

Like many of you I am concerned this has an underlying immune component but I show no ill health other than this disease and osteoarthritis which I was diagnosed with about 4 years ago. But I still worry what this could mean as far as my general health. I guess time will tell. I told a friend of mine if this is the worst thing I get in life I could be ok with that....anyway, hope you all are having an itch free new year and check out the CalaGel if you have not tried it. I got it at a Walgreens and have NO affiliation with the company....just trying to help.

Tammy
Title: Re: Grover's disease
Post by: Trish425 on Monday January 02, 2006, 05:32:16 PM
HI Tammy,
I am so sorry that you have this terrible disease! I have been suffering for over 1 year now. I am 41 and in good health, except for this darn rash. I had a great summer and once October got here, the rash was in full action. I am using creams from my Dermatologist, but I am still itchy. I have scars that are really bad all over my back, upper arms, face and neck. I just wish that there was a cure, but I will try the gel that you wrote about. I do believe that stress and the dry heat inside the house really make me itch more. The blood stains have ruined some of my clothes, but I am really trying not to scratch.
Good luck to you and I will take your advice!
Trish
Title: Re: Grover's disease
Post by: skinnybonedog on Monday January 02, 2006, 07:45:44 PM
Hi Trish,

Thanks....I don't think I have this as bad as some of you which I guess I can be glad for. I do worry about it getting worse with each outbreak but so far this episode has not been as bad as the first so if the trend stays that way I will be happy. It seems many more women have this then Dr's think or at least what the online links seem to depict. If you can't find the CalaGel in a local store it is available online...just do a google search. Even Amazon.com has it. If any of your try it let me know if it helps. Would be nice if we could find something that is more generalized in helping with the symptoms.

Tammy
Title: Re: Grover's disease
Post by: Jimbo on Wednesday January 04, 2006, 03:29:41 PM
I don't know if you people are aware, but there is a Dr. Paul Dantzig in New York that claims to have successfully treated Grovers with a drug called chemet. Read back through the last couple of pages. I think we should all be looking into this treatment.

Jimbo
Title: Re: Grover's disease
Post by: mepen on Sunday January 08, 2006, 01:51:43 PM
I've been following the threads in the skin cell from time to time and just logged on after some time away. JD1 and Jimbo are staying on top of the game and are onto the latest Grover's research which says there is a mercury link (the Dr. Dantzig report). I took Dr. Dantzig's info to my derm and the derm wants to test my mercury levels, but as usual, I have to get the okay through my PCP first. I will post here after I get the test and results. For a bit of background, I have had Grover's for 14 years now. I am a 49-year-old woman. The lesions started on the front of my thighs and progressed to the whole length of my legs and arms. In the past year, lesions are also beginning to show on areas of my mid-back.  Each lesion leaves in its aftermath a pigmented spot so my arms and legs look like they are covered with freckles. The freckles can flare up with irritation and turn back into open Grover's lesions so I have to be careful what fabrics I wear and how I treat my skin (no wool, no rubbing, no strong sun exposure). For history of treatment, I've tried topicals: Dovonex, Cortisone creams, Retin-A and Tazorac. No luck. The best luck I've had is with low-dose Accutane 10 mg two to three times a week to keep it in check. When I started on Accutane I took 10 to 20 mg every day for a few months. The Accutane is the best help I have found but the help is limited. It is not a cure. (AND if you are thinking of Accutane, keep in mind it is a very dangerous drug, especially to a pregnant woman! Pregnancy is a NO-NO!) The other thing that helps me (but again not a cure) is staying away from dairy products. I find I can eat a small dish of organic yogurt and drink a bit of organic milk in my coffee and I'm okay. But if I drink an 8 oz. glass of regular milk such as Hood, I will flare and itch within 24 hours. When a lesion does act up and itch, I get relief with Band-Aid Anti-Itch Gel by Johnson & Johnson (it is a clear gel, Walmart $4.49 for 3 oz tube). Patting the skin dry and moisturizing with a good moisturizer for sensitive skin after showering helps preserve the integrity of skin and helps ward off irritation and outbreaks. Again, none of these things are cures, just things that have given me some relief and keep the disease somewhat in check. Any help anyone can offer on this site, please do, because as you guys know, this is an aggravating condition that is unrelenting. It does not go away. It is always there ready to rear it's ugly, itchy head. Thanks everyone for all your posts and thanks Skincell.org for providing this site where we can share our experiences. Who knows, perhaps with all our heads together, we will come up with a cure! Now, wouldn't that be wonderful?!
Title: Re: Grover's disease
Post by: cdale on Saturday January 21, 2006, 10:01:40 PM
Greetings all, just to let you know I have had great relief with a rash talc called Curash. Or I have gone into a transient stage. Good luck with the mercury testing. I will get mine checked next time I am at the Doc's.    Col
Title: Re: Grover's disease
Post by: mitch itch on Sunday January 22, 2006, 11:56:02 PM
The blood titer came back negative for Pemphigus foliaceous.    The derm is pretty sure I don't have Grover's, the test says I don't have PF and he doubts it is Nummular Dermititis.   Interestingly, he still thinks it is PF even tho' the test was negative.    For right now I am off the prednisone and only using Halobetasol ointment in Aquaphor.    The lesions have lessened and the ointment stops the itch immediately and seems to make them go away quicker than anything I have used.    In the evening, if my scalp gets really itchy (the scalp itch is a new thing in the past 2 weeks) I take either a 10 mg or 25 mg Atarex which helps a bit, but it tends to make me sleepy.   Since I probably don't have Grovers, I probably won't post again on this site, but intend to monitor it because you all have hooked me with your information----which I may need down the road---we never know with this derm stuff do we.    I will be anxious to see if the chelation works for anybody.    Thanks for all your information and support and I wish you all good health and remission.     Mitch Itch.
Title: Re: Grover's disease
Post by: Jimbo on Wednesday January 25, 2006, 12:27:34 AM
Hi Mitch
Were you not the first one to post the article by Dr. Dantzig linking Grovers to mercury toxicity? I realize that you don't have Grovers, but I'm wondering if you wouldn't be wise to get a blood test for mercury toxicity anyway. What have you got to lose?

Jimbo
Title: Re: Grover's disease
Post by: phoebe on Wednesday January 25, 2006, 02:28:52 AM
Hi, everybody.  I'm Phoebe and new to Skin Cell.  Found you last night when I was searching for information on Grover's.  I'm female and 49 and on my third outbreak - this one the worst.  The last two times Accutane cleared it up, but it has returned again.  And Accutane is so hard on me I'm reluctant to take it again.  Desoximetasone helps but doesn't really clear it up.  A new Derm  prescribed Dovonex, which allowed the Grover's to explode.  I stopped it after two days.  I realize that I am fortunate in that mine will sting in water or with the application of certain lotions, but it never itches.  A biopsy diagnosed Grover's and it looks like Grover's, so it's looking and quacking like a duck - mine just (blessedly) doesn't itch.  But I'm so discouraged to read how long so many of you have been suffering with this.  My Derm told me it should go away as mysteriously as it appeared.  Sigh...
Title: Re: Grover's disease
Post by: bookbear on Wednesday January 25, 2006, 03:06:35 AM
Welcome, Phoebe!

Well, its often described as "transient acantholytic dermatosis", but for many of us, its just not transient, it seems to move in and stays!  You will find some good people here, and lots of support and understanding, along with some good suggestions.  Also, be aware that Grover's seems to behave differently (sometimes VERY differently) from person to person and from time to time in the same person.

Best of luck to you!
Title: Re: Grover's disease
Post by: jd1 on Wednesday January 25, 2006, 02:27:03 PM
Hi Mitch,

In case you are still monitoring....thanks for the link to the article and good luck to you too.  I have been on the pills since Fri, I will let everyone know how it goes.  I think you found our best shot at permanent relief.  I would think that I am not the only one who would still like to hear how you are doing, even though you might not have Grover's.  Best wishes.
Title: Re: Grover's disease
Post by: bsoloway on Thursday February 02, 2006, 12:12:11 AM
Hi guys,
Today is the beginning of Grover's for me...although I am waiting for the biopsy to come back it seems like a sure shot that I am in it for the ride (two months and counting - on my chest & stomach).
I have found some information that might give some hope...but I must say that your comments have already given me some hope.
At 62 I like to ride a bike hard, exercise & ski - hearing all the stories about sweating has me a bit depressed.
Anyway, here is the info...
Please stay in touch.
Thanks,
Bruce

AGE-RELATED MACULAR DEGENERATION AND CUTANEOUS SIGNS OF MERCURY TOXICITY
Paul I. Dantzig A1
A1 Department of Dermatology, Columbia University School of Medicine, New York, USA
Abstract:

Objective. The objective of this study is to determine the relationship between age-related macular disease, and cutaneous signs of mercury toxicity. Methods. Fourteen patients with macular degeneration, 14 patients with Grover's disease, 14 control patients over the age of 52 with no signs of Grover's disease, and nine control patients over age 57 with measurable blood mercury levels but no evidence of macular degeneration were randomly selected. All patients had physical exam, skin biopsies where applicable, and blood mercury levels checked. Results. Of the 14 patients with macular degeneration, 11 patients had Grover's disease, two had spongiotic papules as reported by Dantzig, and 13 had measurable blood mercury levels. Of the 14 patients with Grover's disease, all 14 patients had measurable blood mercury levels and three of the patients were treated with diet and chelation with excellent response. Conclusions. Grover's disease may represent a cutaneous marker for age-related macular degeneration, and low levels of mercury may represent an etiology for both age-related macular degeneration and Grover's disease. If these findings are corroborated and proven to be true, then both diseases could potentially be drastically reduced or eradicated through strict environment controls.
Title: Re: Grover's disease
Post by: bsoloway on Saturday February 04, 2006, 09:50:48 PM
I have had some success with Tea Tree Anticeptic Cream.  I first used it to treat sand fly bites that I got in Vieques...it was the only thing that worked.  I have been treating my rash with it for the past few days and it really helps with the itch and some of the rash seems to be going away...give it a try - it can be found at Whole Foods or health food stores and some vitamin shops.
Bruce
Title: Re: Grover's disease
Post by: cdale on Sunday February 05, 2006, 02:39:38 AM
Greetings bsoloway, Sorry to hear that you have joined the grovers group. I also love to ride my bike an was shattered when the derm yold me not to sweat or wear lycra.As stated earlier I am doing very well with talc and still have only a few spots here and there. I use a cotton singlet unde my cycling top and have been looking at cotton shorts under the knicks. It has been too hot to ride lately so I will see how it goes in a couple of weeks.  Good luck   Col
Title: Re: Grover's disease
Post by: bsoloway on Sunday February 05, 2006, 02:20:59 PM
Col,
I am really looking aggressively for some comfort - so far the Avino anti itch and witchhazel with aloe is helping a bit...talc is next.
On biking I would think the light bike shirts that absorb the sweat would be good but cotton is suppossed to be better - why?
It is good to hear that you have improved - let's hope is keeps - I will keep you posted.
B.
Title: Re: Grover's disease
Post by: Trish425 on Tuesday February 07, 2006, 12:15:47 AM
Hi everyone,
I am just wondering if anyone else the same problem as me...my grover's bleeds even when I don't scratch it. I have been so itchy the past few weeks that I feel as though I am going to jump out of my skin. The bleeding is a total mess...I now have it on my face. The main area is on my chin and neck right now. I have tried every cream and gel and talc. The last one that I tried was Calagel. It kind-of helped, but it flaked on my face. Any advise? I am an itchy, bloody mess!
Thanks,
Trish
Title: Re: Grover's disease
Post by: jd1 on Tuesday February 07, 2006, 02:36:42 PM
Trish, mine used to bleed.  I also have felt like I was going to jump out of my skin.  Look back a couple of pages where we began discussing research article published by Dr. Dantzig.  I have been on the pills for 2 1/2 weeks so far.  Had a massage last night, she said that my skin looked great.  It's sometimes hard for me to measure - I've been checking myself every 5 minutes.  I am very hopeful for all of us.  Get a copy of the article and take it to your derm.  I see mine next week, and I will post more after that appt.  Good luck.
Title: Re: Grover's disease
Post by: knothole on Wednesday February 08, 2006, 01:34:57 AM
JD1, hope things work out for you.  I just sent my derm the information.  What pills did your derm give you?  Will be waiting to he how you do next week.  I go back in 5 weeks, hopefully he reads the info and may be talk with the doctor. 

Knothole
Title: Re: Grover's disease
Post by: jd1 on Wednesday February 15, 2006, 04:54:17 PM
Hi everyone,

This is in reference to Dr. Dantzig's article, which Mitch found and which we have been discussing off and on since page 13.  I am not going to repeat what has already been posted.

I saw my derm.  She said that the lesions are very small and flat.  She cannot feel them.  She said she would not be able to diagnose Grover's based upon what I now have.  I will see her again in one month.  My skin looks and feels better than it has in 10 years.  Normally, my skin is in bad shape this time of year.  I haven't lasered since early November, the air is dry, I am cold and take long hot showers, and this is the time of year when my work is really challenging.
 
I have been on chemet for 3 ½ weeks.  The drug is FDA approved for lead chelation.  My regular doc said that use for mercury is off-label.  I was surprised at the negative reaction I got from several docs when I said that I was going to try this process.  I guess chelation is not mainstream.  The drug is expensive.  I weigh 125, my dose is 2 pills 3 x per day, and a one month's supply cost about $1,200.  Thankfully, insurance paid for it.  We'll see how I do on the refills.

My understanding is that this drug can be tough on the body.  It can decrease immunity, and I believe that it is tough on the liver and kidneys as it pulls the mercury out. It doubles the excretion of zinc, but as I understand it, not other important minerals.  For those of you who want the details, after two weeks on it, my blood work came back pretty stable compared to last summer except for ALT (SGPT), which increased 20 points to 35 with 40 being the upper acceptable limit, neutrophils, which went down from 56 to 47, 45 being the lower acceptable limit, and neutrophils (ABS value) which went from 1.73 down to 1.42.  1.50 is the lowest acceptable limit.  The neutrophils have something to do with the white blood count.  My doc was not too concerned, and I am going to get tests done again this weekend to be sure all is stable.  I have held myself down to one glass of wine a week in an attempt to show my body respect for the additional work it is doing (I usually have one or two several nights a week).  My appetite is definitely suppressed.  I have lost 3 pounds and have been making myself eat.  Please read the PDR and educate yourself before jumping in. 

After one week on the drug, I could see a difference in my skin.  My mom was really surprised.  She had not wanted me to do this.  Week two some new lesions formed, and I was psychotically depressed.  Now I am very hopeful again.  I can see the Grover's after a hot shower as little red pin pricks.  I generally don't feel them. 

I have totally given up seafood, which is a huge lifestyle change.  I should mention that I didn't feel well for the first couple of days.  I think my body was adjusting to this drug.  It made me pretty gassy, which my kids thought was a riot.  Once I adjusted, I noticed a change in my insomnia, which has been pretty bad for several years.  I have been taking Rx sleeping pills at least a couple of times a week, and valerian or Calms Forte on most of the other nights.  But just the last couple of weeks I have been sleeping really well.  I don't know if that's related to the drug, less mercury, or less wine.  I hope it's not the latter!  Also, before taking the drugs, I had three amalgam fillings removed.  I'd been thinking about doing that anyway.  If you are going to do both, have the filings removed before doing the chelation, because the removal process causes exposure to mercury.

I am going to continue this process for at least another month.  If my skin is good a couple of months after stopping, then I am going to send information to the derms in my community and other places in order to spread the word.

I hope this information is useful.  For any of you who move forward with this experiment, please post your experiences.  I am very interested.  Best wishes.
Title: Re: Grover's disease
Post by: rosycheeks on Wednesday February 15, 2006, 05:07:13 PM
Ohh this sounds nasty have you tried some antibiotic light therapy, I have been using Laserwand Bella  www.Laserwands.com for some acne blemishes and its worked well and I know of people who had success with constant skin Itches Just a thought I know accutane can be nasty.
Title: Re: Grover's disease
Post by: jrabbit on Wednesday February 15, 2006, 08:54:10 PM
Hi JD (and everyone else)

New to the forum, but have been reading it for a while. I am a 34 year old female who has had Grover's (diagnosed via biopsy) for about 5 years on and off. This last year it has become chronic and covers me from collar bone to pelvic bone front and back. Don't need to tell any of you how horrifying this is physically and emotionally.

I have tired every topical treatment out there - not only do they not work, but the area is too large to slather myself every day (as I assume it is for most of you too)

I have tried the PUVA light radiation - which was a nightmare - burned to a crisp and it just made the Grover's worse.

In desperation - I am now under the care of a Traditional Chinese Medicine doctor and while it's just been over a week... I have not had any flare ups (not even in the shower with hot water) and what was there seems to be getting better.. less red.. less raised, forming scabs and going away.

His theory is that it is a result of a compromised immune system that is working so hard just to keep up that it produces heat from inside the body and this overheating from within is what causes the rash. The treatment is to boost the immune system, cool yourself down and not do anything that aggrivated the immune system in the process.

So acupuncture once a week, chinese herbs (which you cook into a foul tasting tea) twice a day and no coffee, no alcohol, no sugar, no red meat and no spicy food and no nicotine.

Apart from the fact that I truly think it's working.. I feel FABULOUS... mood is great - great energy, no stomach upset, clear head etc.

I have no idea whether this is the answer or not yet.. or if this might help anyone else.. but I thought you might like to know.

JRabbit
Title: Re: Grover's disease
Post by: Daisey on Thursday February 16, 2006, 12:49:22 AM
  :hi: welcome to skincell Jrabbit

  daisey
Title: Re: Grover's disease
Post by: knothole on Thursday February 16, 2006, 02:03:26 AM
JD that news sounds great!  Please keep us posted on your treatment to see if this does rid you of your spots.  Glad to hear the insurance picked up part of the tab on the pills.  A bit pricey but if it works is sure worth it.  I sent the article to my derm and will wait to see what he has to say when I go back in.

JRabbit, what herbs are you using to make this tea.  I have looked into some of what you are saying and have gotten the same answers but never have used the tea.  Plus just can't totally quit the red meat and some of the surgar.  Do have a little sweet tooth.  The other stuff are no big deal to me.

Knothole
Title: Re: Grover's disease
Post by: jrabbit on Thursday February 16, 2006, 05:12:04 PM
Hi Knothole,

Truthfully I have no idea what the "herbs" are - every week the Chinese doctor presents me with a dosed out concoction that he shops for personally in china town... this is what TCM (traditional Chinese medicine) doctors do.. they prepare the mixture for you, tweak it as they watch your progress, and you just take it home and make it.

I have asked him to write down what he is giving me so I can give it to my family doctor and I'm supposed to get that list on Friday - I will gladly post it if you wish.

I will tell you that he did say that if I wasn't willing to follow the diet restrictions totally then I shouldn't bother with the treatment as it wouldn't work.

I hear you about it being hard to give things up... but isn't it worth doing this for a couple months if it clears up the grovers??? After treatment you can go back to occasionally having these things......

JRabbit
Title: Re: Grover's disease
Post by: knothole on Friday February 17, 2006, 01:15:49 AM
Jrabbit, please post.  I do think there is something to it.  Even if western meds. don't think so.  Just hearing my parents change in diet do to their problems.  I have cut some need to cut more.

Knothole
Title: Chinese medicine
Post by: jrabbit on Tuesday February 21, 2006, 02:10:52 PM
Hi Knothole,

Here you go... I have no idea what any of this is.. but here is the list of the 11 ingredients in my mixture (all are dried)

Chinese Angelica

Chinese Fox-Glove Root

Fleeceflower Root

White Peony Root

Suberect Spatholobus Stem

Dwarf Lilytrof Tuber

Upright Ladybell Root

Puncturevine Caltrop Fruit

Sophora Root

Belvedere Fruit

Glossy Privet Fruit

As I said... I have no idea why.. but it truly seems to be working where no Western medicines have ever helped me before.

Good luck!

Jrabbit
Title: Re: Grover's disease
Post by: knothole on Wednesday February 22, 2006, 01:58:47 AM
Jrabbit, thanks.  I don't know what they are either.  How did you find the TCM doctor that you trust, since we are not trained in these methods?  I have read on the very things you wrote in your earlier post about the internal heat creating the problem.  Seeing that you have taken it farther than I did, I think I may go back and flow it up.  It does make some sense.

Knothole
Title: Re: Grover's disease
Post by: jrabbit on Wednesday February 22, 2006, 01:21:02 PM
Hi Knothole,

I found the TCM doctor by asking everyone i know if they had gone to one, or knew anyone who had.  If you can't find a personal reference, I suggest you take a look at your local journalists and see who they use for pundits in stories on alternative medicine. I say this because generally the media is pretty good at checking references and there is a high probability that the experts they use are pretty good at what they do. You could also do a local google search for TCM and skin rashes and see if anyone in your area specializes in this field. Skin disorders are a main focus of TCM - so you shouldn't have a problem finding a  TCM practitioner who deals in this field. The only other suggestion I have is see if there is a TCM college in your area.. they are a good reference source.

It's been 2 weeks and I am SOOOO much better with no new flare ups and I am really encouraged by what I'm seeing and feeling.

Hope this helps.
Title: Re: Grover's disease
Post by: knothole on Friday February 24, 2006, 05:05:14 AM
Jrabbit, keep us posted on your progress.  When you give your doctor the info on the tea please let me know what they had to say.  I am looking back into it since you seem to be having some success.  It truely make sense.  Because when I start to itch I do feel warmer.  Even in colder weather.

Knothole
Title: Re: Grover's disease
Post by: jd1 on Friday February 24, 2006, 03:23:46 PM
Hi everyone,

I have been on chemet for a month now.  As of yesterday, I must stop.  Got the results from the 2nd blood work and several counts that were fine two weeks ago are really low.  Apparently if anyone breathes on me I will die because I have no immunity.  Kidding, but you get the idea.  The point for anyone who decides to move forward with this is be sure to keep up with the lab work.  I was going to put it off because I feel great - what could be wrong.  The doc in NY who did the research on mercury and skin has not seen this side effect in any of the Grover's patients that he has treated.  Leave it to me to be the one pain in the butt who has the potentially serious side effect.  I am pretty darn healthy, except for this skin thing, but pretty high maintenance too.  I am sensitive to everything.

For any of you watching this experiment (I did say I would be the guinea pig), I hope this does not scare off any long term Grover's sufferers from trying this out.  I am really happy with my progress after even just one month.  Dr. Dantzig's success in treating this difficult disease speaks for itself.  I am happy that I have done this and frankly hope that when my blood count recovers that I can finish the process, but perhaps at a slower pace.  Not sure if the docs will let me.  I suppose that the good news is that stopping will give me a chance to see if the good results really last.
Title: Re: Grover's disease
Post by: mepen on Tuesday February 28, 2006, 02:18:34 PM
I haven't posted in awhile so here goes:  I had my mercury levels tested and they came back a 5. Normal reference range is anything less than 10 mcg/L so according to this test, I am within normal range. However, according to what I've heard from Dr. Dantzig's studies, he feels that any detectable level of mercury, if cleared, will bring relief to a Grover's victim. I"ve been following along with JD who is going through the Chemet chelation and sure enough her lesions cleared. However, she has now put therapy on hold because her last blood lab showed some abnormal values that she suspects is from the Chemet. Anyhow, I see my derm in March and will bring all info and see what transpires as to next course of action. I'm so confused. I just wish this dreaded disease would go away. I"ve been on low-dose Accutane and I quit taking it 3 weeks ago and now I'm a mess. My legs have flared up again. They felt like they were being burnt by the heads of match sticks all night. I could barely sleep. Does anyone else get this sensation? Plus I've been under stress with a beloved cat who is quite ill and I am nursing back to health and I've been putting away a glass of wine every night which I seldom do. So, idiot me, between stress, wine, and going off Accutane I'm back to square one.
Title: Re: Grover's disease
Post by: mepen on Tuesday February 28, 2006, 02:41:16 PM
Didn't get to finish last post so here is the rest: I don't particularly like taking Accutane, but will definitely go back on it for now. I've been reading about the Chinese herbs and find that very interesting too. Accutane affects the liver and is processed through the liver and perhaps that is why it works in some way. However, overtime Accutane wreaks havoc on the the liver and raises cholesterol, etc.etc etc ...the side effects are frightening to say the least....read the pamplet. The herbs work on balancing energies, yin and yang and hot and cold and often through the liver. Since my Grover's is a hot, burning type I like the idea of cooling down energy.  However, there was a story on the Boston news a while ago that contaminants were found in some of the herbs prescribed in Chinatown---I know lead was one, perhaps mercury another I'm not sure what else but very toxic contaminants. There are many herbal docs in Chinatown in Boston but I'm not sure who is best. I'd give it a shot if I knew the herbs were strictly organic and not contaminated. I'm also thinking I should give Chemet (the chelation drug) a try but still waiting to see how JD makes out long-term. Right now, I'm confused as to which way to go with treatment. Just wish Grover's would go away. Please, people, keep posting, and please don't go away if you find something that works...like someone said in a past post, it is often the people who solve the problem that stop posting, and the ones who continue with it that complain and post and compare notes. So if you've had success with anything, please post! Thanks
Title: Re: Grover's disease
Post by: jd1 on Tuesday February 28, 2006, 03:54:40 PM
M, I thought I would post here rather than by email so anyone else who is interested could evaluate the experience.  Try the chemet.  The improvement was quite quick.  His success rate is very high.  The theory makes sense.  As I understand it, the risk of the drug is during the treatment period - not for a long time after, as is with accutane.  It's only been a couple of weeks, so take this with a grain of salt, but the thing that blows my mind is how much better I feel - not re my skin, but my mood is so much lighter, and I cannot believe that I am sleeping well.  That's in spite of the work stress that I am currently under and some family stress that I have spared you.  Drugs that suppress the reaction are going to have to be permanent to maintain benefit, right?  If this disease is a reaction to mercury or mercury-induced, then removing the mercury should be permanent.  If not, there is nothing wrong with getting the mercury out anyway.  I believe that the half life of mercury is years and years.  It is associated with all sorts of "nonspecific" complaints but also serious diseases.  I am going to be really bummed if this reaction causes me to not be able to continue this process.  Good luck with the precious cat.  J
Title: drugs or herbs
Post by: jrabbit on Tuesday February 28, 2006, 07:50:17 PM
As far as I'm concerned....drugs or herbs.. whatever gets rid of Grover's is fabulous with me. I am still finding amazing results from the Chinese medicine treatment (which is acupuncture and herbs just to be clear) and I'd say I'm about 80% cleared up (and I was really bad) nor have I had any new flare ups. On top of all this, I feel GREAT - which I'm sure is also due to the no coffee, no booze, no sugar thing too. My energy is great, my mood is great, and I'm sleeping like a log.

As far as contaminants in the Herbs... well I really can't believe that if there are any that it is any worse for you than the adverse side affects of oral retinoids.. i.e. bone spurs, liver damage etc. I think you just have to find a practitioner that is reputable and who can answer your concerns.. just as you have to find an MD who will monitor drug side affects and watch out for problems.
Title: Re: Grover's disease
Post by: knothole on Wednesday March 01, 2006, 01:00:07 AM
Let me add something to all this, too.  I started the herb thing but never went as far and didn't strict with it as Jrabbit.  But now reading her posts I've gone back to do some more research.  I to was told to stay off red meat, booze, spicy foods, and etc.  and to eat more white meat, green teas and other cooling foods. 

The Chinese as you've read has internal heat, internal dampness, external heat and external dampness.  They look for balance.  I don't know about all of you but when I start to itch I do feel hot like a sunburn and I haven't been near the sun.  My neck and ears turn beet red.  This to me seems like an internal heat and I was also told this.  I have found sights that say there are 5 types of food groups cold, cool, neutral, warm, and hot.  I am making a list of these and try to blend cold with hot or warm with cool trying to balance a meal but staying away from hot as much as possible.  Sometimes I feel fine and then start warming up and itching a little after dinner but then sometimes not.  So I really don't know but I do notice and even told my derm that sometimes after a certain BBQ steak with seasonings I start to itch.  Is it unbalanced and internal heat?

Lets take another health issue that everyone knows about, diabetes.  It is a blood problem and you regulate it with the types of food you eat.  So, what Jrabbit said her TCM doctor stated about a compromised immune system could be correct with all the junk we eat.  Our processing of food doesn't run as good as it did when we were younger.  I hear this a lot from my parents and sister who have had to change there diets in later years.   

As with all of us I want to rid myself of this itching.  Good luck to all!

Knothole
Title: Re: Grover's disease
Post by: knothole on Thursday March 02, 2006, 02:50:32 AM
Jrabbit, I went back to your post to me on the list of herbs you're taking.  You said you didn't know what the heck they are but it is working.  I don't know what they are either but I did a Google search for each one and it is very interesting on what he gave you and what they all do.

Plus if you do a search for "Chinese cool foods"  you find some information on food combinations and how it effects our bodies.  I am beginning to wonder if our systems aren't a little messed up by our food, lives, and just our makeup.

Some people smoke 3 packs a day and drink all the time and live to ripe old age but someone else can't.  Since this is may be related to skin damage by the sun, why some people can stay out in it longer that others.  I know people who walk out in the sun and there skin burns and others who bake in it way more than me and don't have Grover's.

So may be we need to adjust.  The herbs he gave you seem to attack this issue.  Hope you are still doing fine and improving everyday.

Knothole
Title: Re: Grover's disease
Post by: jd1 on Friday March 03, 2006, 05:30:31 PM
Hello everyone, I just got my blood work back - chelating the mercury, horrible test results last week.  All is within range except for WBC which is at 3.2, which is actually higher than my baseline, which is always low.  I am absolutely thrilled, grinning from ear to ear, very happy that my body recovered this quickly.  Very relieved.
Title: Re: Grover's disease
Post by: knothole on Saturday March 04, 2006, 12:21:01 AM
JD, glad things are  working out fine.  Besides your blood how are you doing with the rash?

Knothole
Title: Re: Grover's disease
Post by: jd1 on Monday March 06, 2006, 06:20:04 PM
Hi Knothole, the skin held its gains until Sat, then the itching started.  Yesterday it flared, and my back is pretty uncomfortable.  Not using any of my favorites - Retin-A or Solaraze b/c I want to see what happens without suppressing the reaction.  The million dollar question in my mind is why...if mercury is the culprit, was this caused by additional exposure?  If so, I cannot figure out the source.  Or does mercury move in the body, and it just now reached a level in my skin to cause the reaction after having been depleted by chelation?  I think it is reasonable to assume that a month wouldn't be long enough to get the mercury out considering the copious amounts of seafood that I used to eat.  Or I have read that the skin is also a detoxifying organ - is this rash evidence of the skin trying to release this toxin?  This is stuff that I am never going to figure out, and that drives me nuts.

I see my derm tomorrow.  I want to continue with 2 weeks on and 2 weeks off.  She may not go for it, considering the blood test at 4 weeks.  If she doesn't want to participate, I will go to NY.  Not done with this experiment yet.  If mercury is the culprit, then chelation should be the cure, and that beats a lifetime of trying to suppress this thing.
Title: Re: Grover's disease
Post by: jrabbit on Tuesday March 07, 2006, 01:43:52 PM
Hi all,

Very quick note today.... things have been going along super with the Chinese medicine etc.. then all of a sudden last Thursday I awoke to find my chest covered with new little and itchy red bumps - I quickly called my Chinese doctor and asked what was going on.. he asked what I had eaten differently the couple days previously.. the only thing I had that was new was a Bengal Spice herbal tea. We looked at the ingredients and sure enough... ginger, cloves and black pepper.. all of which fall under the "spicy food" category... who knew!! I stopped it immediately.. and within 1 day the itching stopped and after about 2 or 3 days they were pretty much gone. And now I'm fine again.

Apparently anything that causes a "warming sensation" in your body when you ingest it is considered spicy food by Chinese medicine standards.. so ginger, cloves, raw onions, garlic, hot peppers.

Anyway - this has convinced me more than ever that whatever he is doing for me is working.

Thought I'd share. Peppermint tea only for me from now on!!!
Title: Re: Grover's disease
Post by: printgirl on Tuesday March 07, 2006, 11:41:49 PM
Did you go to see Dr. Dantzig at Columbia? I couldn't find his name listed under the derm faculty. Any other dermatologists in the NYC area you would recommend that are familiar with Grover's?

I am interested in the chelate pills, too, but worried about side effects.
How long have you been on the pills? are you on a restricted diet too?
thanks so much,
printgirl
Title: TCM doctor
Post by: jrabbit on Wednesday March 08, 2006, 01:36:27 PM
Just in case anyone wants to know - here is the info on my TCM doctor - pls note  - for those of you in the US looking for practioners - check out to see if you city has an Acupuncture Association in your area - they can direct you


Bill Zhaogon Xu, C.M.D., D.Ac


Bill Zhaogong Xu has been practicing Traditional Chinese Medicine for over 25 years. He has mastered every area of traditional Chinese medicine with a special concentration on women's and men's fertility and reproductive health. In addition he treats skin disorders such as eczema, psoriasis and related hormonal issues.

Xu studied at the Anhui College of Traditional Chinese Medicine in China from 1975 to 1977. He then worked in Zhejiang as a physician of TCM for 4 years before continuing his education in TCM and Western Medicine at the Zhejiang University of TCM from 1981 to 1985. In 1991, he was appointed as head physician at Shanghai General Hospital.

In 1996, Xu was invited by Sasazaki Oriental Medicine Research Center in Nagasaki, Japan as the director of Traditional Chinese Medicine. There, he taught doctors and pharmacists TCM and also practiced in the area of female and male infertility. In 2003, Xu moved to Canada to pursue private practice.

Dr. Xu is a member of The Chinese Medicine & Acupuncture Association of Canada.
Title: Re: Grover's disease
Post by: jd1 on Wednesday March 08, 2006, 04:07:17 PM
Hi printgirl,  I am on the other coast.  He was kind enough to answer my questions via email.  The article lists Columbia University.  He has a website, do a search on google, you will be able to find his ph #.  I was on chemet for one month.  At 2 weeks blood was fine, at 4 it was not fine.  Thankfully recovered in 1 week.  I saw my derm yesterday.  Starting next week I am going to start again, 2 weeks on, 2 weeks off, with weekly blood tests.  Going on the theory that flare this past weekend is rebound, which is common with this drug with the autistic kids who chelate.  They go through several rounds.  There's a ton of info online, search dmsa and rebound.  Yes, chemet has potential side effects, but they can be measured and monitored w/ blood tests.  The meds didn't feel very good at first - or maybe it was the mercury being released - but at about the end of week 2 I started feeling great.

No, I am not on any type of restricted diet.  That's wonderful for those who have the willingness to restrict.  I am not.  I'm already a big enough pain in the butt without adding one more preference or limitation to my already long list! 

Please let me know how you progress - I am very interested.  My understanding is that his success rate with this disease has been very high and that his patients have not had the blood problem that I recently experienced.
Title: Grover's disease
Post by: gsperez on Tuesday March 14, 2006, 10:26:01 PM
Hi everyone,
I just wanted to introduce myself. I've been watching this thread since being diagnosed with Grovers a few months ago. It has been helpful to hear about other peoples experiences. I am a 42 yr old woman who's had eczema all my life. Over 3 years ago after a normal summer of lots of outdoor sporting activities in the sun (yes with sun screen ;D) I started to get really crusty sore bumps  on the backs of my legs and a few on my stomach that would not go away. Honestly, I was afraid to go to the derm, because I thought they'd just say my misspent youth on the beaches of sunny California surfing and tanning were coming back to haunt me and I didn't want to be told I would spend the rest of my life wearing heavy clothing from head to toe if I wanted to play sports, swim or do anything outdoors. The sores never went away, got worse each year and about 6 months ago I finally got an outbreak all over my chest, back, thighs and arms that was so painful it was hard to put any clothes on to go to work. More than a rash, the almost "hooked" ends of the crusty tops get caught in fabrics and feel like they are stabbing me. So I went to the doctor, who did a few biopsies and said I had Grovers as well as some potential spots of Actinic Keratosis. Other than the fact that I'm in the minority of the 1.8% of all sufferers who are women with Grovers - I also seem not to get any kind of real recovery no matter what I do. Even though I've only been officially diagnosed recently I've been suffering with it constantly for over 3 years. The best I can say about the variety of Steroid creams and ointments I've been prescribed is that they occasionally make the crustiness a little less sharp. Some of them have made my skin feel so dry that it was as painful as the sores and it just makes the overall appearance of my skin so shriveled. I went from being a bikini and short sleeve wearing athletic woman to watching other people's staring reactions to my skin if I'm wearing a short sleeved tee. Please tell me it gets better! What's been really helpful to me about the Forum is just that people understand what it's like. When I told family I had Grovers disease and they ran off and Googled it for info, they just thought "oh she has a bad rash that will go away- big deal". But that doesn't begin to cover it does it? And it might not ever go away! Yikes. Anyway - just wanted to say I appreciate this forum to see all of what gets posted about treatments and symptoms.Thanks!
Title: Re: Grover's disease
Post by: knothole on Wednesday March 15, 2006, 02:20:11 AM
gsperez, welcome.  Sorry we had to meet this way! :(  I know they say this is more of a man's disease but I keep seeing more women with it to now.  People here are very helpful and do understand.  I myself was a West Coast surfer years ago.  Now into boating with the kids.  I can't give up the sports but the rash and itching does make things harder now.

JD is working on a new treatment that seems to be working.  Jrabbint is using Chinese medicine and foods. 

I think all of us have tried Accutane at one time or another.  I had started looking into the Chinese medicine and foods last year but didn't follow up on it ti Jrabbit started posting her success.  So I am looking back into it again.  Hopefully, one of the members will hit on something to help us all.

Don't loose hope and keep on trying.

Knothole
Title: Re: Grover's disease
Post by: gsperez on Wednesday March 15, 2006, 05:27:46 AM
Thanks Knothole! I'll look into more of the info about the herbs, dietary stuff and the Chelation angle as well. I'm a bit nervous about accutane  - but some relief would make it a risk worth taking.

Take care!
Title: Re: Grover's disease
Post by: Jimbo on Sunday March 26, 2006, 02:42:32 AM
I too am interested in chelation since reading Dr. Dantzig's findings. I'm in Canada and Chemet is not available here so I've chosen a naturopathic alternative called Detoxamin. It is available over the internet. I costs about $300 CDN for a one month supply. I had a blood test for mercury before taking the Detoxamin. It was 29.4, quite high. After one month on Detoxamin it was reduced to 17.4. I'm going to continue with the Detoxamin for two more months and then have it checked again. No difference in the skin thus far. Jrabbit I am interrested in the Chinese medicine doctor that you are referring to. Is this the doctor who has an office on Bathurst St. north of Queen? If so I've had some experience with him that I'd like to share with you.
Title: Re: Grover's disease
Post by: jrabbit on Monday March 27, 2006, 06:49:10 PM
Hi Jimbo,

No - my doctor works at the Total Wellness Centre at Avenue and St. Clair.

The website is www.totalwellnesscentre.ca

Sounds like you've had a bad experience with your TCM doctor.. I'm sorry to hear that.. what happened?

As for me... it's been just 2 months now and I am 90% clear with no recurrence and I feel better physically than I can ever remember feeling.. so for me it's working.

JRabbit
Title: Re: Grover's disease
Post by: Jimbo on Monday March 27, 2006, 08:52:27 PM
That's good. The one I was seeing was giving me this cream along with herbs that I made a tea with. He didn't know what was in the cream. It came from China. It was amazing how much it helped temporarily. I talked about the cream some time later with a naturopath and he told me that it was probably cortizone. I'm sure your guy is very good, just be cautious.

Continued success,

Jim
Title: Re: Grover's disease
Post by: mepen on Wednesday March 29, 2006, 02:34:06 PM
Jimbo,
Please explain a bit more about your therapy with Detoxamin. Are you getting your blood values checked regularly in case Detoxamin screws up counts other than mercury?
Title: Re: Grover's disease
Post by: hbelk719 on Wednesday March 29, 2006, 07:23:37 PM
I have had minor/moderate outbreaks of Grovers (diagnosis based on appearance) for years.  Now I have a severe outbreak on my chest and stomach.  There is also an outbreak on my arm that my Derm. suspects is Grovers.  No topical seems to work.  Today he took biopsies of both areas to confirm Grovers.  I have no doubt about my chest/stomach but not sure about my arm.  He was talking about the next step, based on the biopsies,  being oral medication with possible serious side effects.  I questioned the nurse if he meant Accutane and she said he may have been referring to Methotrexate since that is what they treat severe psoriassis with.  He is usually pretty conservative but this looks like some serious stuff.  Has anyone had any experience with it?
Title: Re: Grover's disease
Post by: Jimbo on Saturday April 01, 2006, 09:19:49 PM
Hi Mepen,
I was on Detoxamin for a month and then off for a month while I waited for mercury blood test results. The results were favourable, from 29.4 to 17.4,  so I've been back on it for a week now. You can find everything you want to know about Detoxamin at their website www.detoxamin.com. I've spoken to them and I get the impression that Detoxamin sort of chips away at the mercury and other heavy metals. They don't say anthing about blood tests, only that you take a good multivitamin and mineral supplement. I haven't had any additional blood work, but may decide to do so down the road. They have an 800 number on their website that you can call if you have any unanswered questions.

Good luck,

Jim
Title: Re: Grover's disease
Post by: skinnybonedog on Monday April 03, 2006, 04:40:25 AM
Hi All,

Have not posted in awhile. Grover's broke out in Dec and it is still hangin around. I went to the derm again and he just shrugs it off which is really irritating. I went to my regular gp and she gave me an rx for something called Clobetasol Propionate....it is a steriod which I don't like using but the itching was getting pretty bad and my chest was a mess. So I tried it and to my surprise it does clear up the rash. Problem is it is pretty strong stuff and is not to be used longer than two weeks without taking a week off. I had been using it and had been getting some horrible headaches. I finally narrowed the headaches down to beginning with 10 minutes of using the Clobetasol. So I stopped using it and after about a month the Grover's was back full force. So I started using it again but using alot less....I was putting the stuff on too thick. Now I just put hardly any on and the rash is under control...even almost gone and there is no itching and I am not getting the headaches. The odd thing is it seems that if I control the rash on my chest, I control it on the rest of my body....I find this very strange. So while I hate using steriods it is keeping the rash tame....so just an FYI in case someone wants to try one more thing on this irritating rash.

Tammy
Title: Re: Grover's disease
Post by: hairgal on Thursday April 06, 2006, 03:28:05 AM
HI ALL...Im new to the forum..in Janurary 2005 I was diagnoised with Grovers..I had a rash for about 3 months..this week my neck started breaking out and some on my arms and stomach..the first time the rash started on my stomach which according to what Ive read is normal..I have not been to the doctor this time as I was not for sure what was causing the rash...Can anyone give me any more info on Grovers...I did not realize I would continue to have breakouts after it went away the first time...so far the itching is not really bad...but the rash seems to be spreading...
Title: Re: Grover's disease
Post by: hairgal on Thursday April 06, 2006, 03:33:02 AM
Sorry I was diagnoised in Januray 04 not 05..I also have a blood disorder called ITP...I have read that alot of Grovers sufferers have blood disorders..just wondering if any of you have blood problems?
Title: Re: Grover's disease
Post by: Jimbo on Friday April 07, 2006, 08:33:49 PM
Hi Hairgal,
Welcome to SkinCell. If you read back over the last several pages you'll see information about a Dr. Dantzig who has found a relationship between Grovers and mercury toxicity in the blood. This is fairly recent info for all of us and at present no one has had a chance to see if Dr. Dantzig's claims work for us. There are at least a couple of members myself included that are doing chelation therapy, but as I said it's too early to tell just yet.
Title: Re: Grover's disease
Post by: jd1 on Friday April 07, 2006, 08:38:10 PM
Hi everyone,

Friend just looked closely at my skin - it is hard for me to evaluate my back.  She agrees it is really really good.  I am almost two weeks off Chemet, will start round three on Monday, so this evaluation is as of when the drug is out of my system.  On top of that, this is when my skin historically has been awful.  My work is seasonal, and I am under a load of pressure right now.  PMS.  And I even took a hot bath with jets on the other night.  By all rights, I should look like the craters on the moon right now and feel that horrible prickly itch all over.   At the end of the second week on Chemet, my white blood count was at 5.7.  I haven't been at that level of "normal" forever.  I hate to jinx it, but I am actually thinking that this is the "c" work...cure.  
Title: Re: Grover's disease
Post by: knothole on Saturday April 08, 2006, 02:52:08 AM
JD that is great news! And hot bath.  Can't get better than that.


Knothole
Title: Re: Grover's disease
Post by: hairgal on Saturday April 08, 2006, 06:20:04 PM
I've enjoyed reading everyones info...the only things I can add to mine is that I also have ITP which is a blood disorder that keeps my plattlets very low and I have too much calcium in my blood. Ive always considered my self to be very healthy...Im not a sun person...work inside and never sun tanned.....once when I was about 10 I had a severe sunburn with blisters on my shoulders but that is it as far as too  much sun......Im fair complexed and have litte melonin in my skin......freckle lightly...but never tan...the breakout I have right now is very heavy on my neck and shoulders and sparce on other areas and very little itching...

Im checking into the mercury will post more later.

nice to meet you all
Title: Re: Grover's disease
Post by: mepen on Monday April 10, 2006, 02:37:46 PM
Had an appointment with derm the other week. She wants me to go back to a university hospital in Boston for Grover's treatment where students and docs are willing and have leeway to prescribe and try new therapies. She can no longer prescribe Accutane and she does not know anything about the Chemet other than the Dantzig research I gave her, so she won't prescribe.

In the meantime, before I go to Boston, I am getting all the old filings out of my molars which are huge and ancient. The dentist wanted to take them out years ago anyhow. JD is having good results with Chemet and if results hold, I'm pushing for Chemet when I get to Boston. The problem I encounter on the East coast is a highly conservative approach. It seems like it takes years for ideas and practices that are norm on the West coast to reach here. And I'm not just talking medical stuff. It can be oppressive. I guess that is why years ago people got fed up and headed out West...and why they were called pioneers......

No offense guys, but to those new Grovers folks who are using steroid creams, it may temporarily take down the flares but it is doing nothing for the Grover's other than masking the symptoms for awhile. When you stop the steroid  cream, you will flare worse than ever. I think all of us who have been battling Grovers for years began with the standard steroid therapy. We have "been-there-done-that" and know it's useless "band-aid therapy" with rebound effect.

JD, my computer is down. I'm going on comcast soon and will contact you with my new email address. In meantime, if anything new, please post here. Good luck with the workload pressing upon your head.......April 15th will soon pass and you can breathe a sigh of relief........

And Jimbo how are you doing?

Title: Re: Grover's disease
Post by: Jimbo on Tuesday April 11, 2006, 02:31:18 AM
Hi Mepen,
I'm doing fine. Thanks for asking. I've resumed taking the Detoxamin after a one month stoppage of treatment while I waited for my mercury blood test results. I've been back on it for a couple of weeks now and will likely continue for at least a couple of months more. I don't anticipate any change for some time. So I'm biding my time. When I have some results I will certainly post them. My skin will either get better or it won't, but the mercury toxicity should eventually be reduced to zero some time in May or June at the latest I calculate. I'll get another blood test at that time. Sounds like you're not far from New York. Have you considered visiting Dr. Dantzig?

Title: Re: Grover's disease
Post by: gsperez on Tuesday April 11, 2006, 04:09:59 PM
Hi all:
I am wondering if any of you have family members who also have Grovers Disease? I just returned from a family reunion in CA and while discussing my experience found that 1 brother and my sister as well as a cousin are all battling similar symptoms (not as severe yet - but neither was mine for the first 2 years). Only my cousin has sought help. Strangely a whole team of Doc's at Stanford didn't seem to know what she had. Anyway... since, like so many skin disorders, they don't know what causes Grovers - I just was curious if heredity is a bigger factor than not. If any of you have relatives experiencing similar, would you let me know.
Thanks!
Title: Re: Grover's disease
Post by: mepen on Thursday April 13, 2006, 01:22:11 PM
Received a call from my derm on Tuesday. She said she and PCP discussed my case at length (1/2 hour conference call) and now I have a referral to a doc who specializes in environmental illness at NEM (New England Medical - Tufts, Boston). I'm impressed and pleased that my docs took the time to hook me up. This doc at Tufts deals specifically with mercury issues and is covered under my HMO, so this is good news----because no, Jimbo, I don't have the financial resources to go to NY directly to Dantzig and pursue treatment outside the HMO, even though, yes, I have thought of that avenue.

No, gsperez, no one in my family has a rash such as Grover's. My daughter has an absolutely horrible case of Raynauds' syndrome and a high ANA of 640. She sees a rheumatologist annually (past 4 years - symptoms developed around age 22) but so far no signs of anything worse such as lupus, scleroderma, etc. She is very energetic and runs marathons so it hasn't really affected her other than the symptomatic cold hands. A few years back, "we-Grover's-folk" tried to figure out if we had something in common, such as another medical condition or similar medications we were taking that might be causing Grover's. The only thing we came up with is that we all seemed to have had large amounts of sun exposure at some time in our lives. However, that doesn't seem to hold true anymore because someone has since posted who said they were never out in the sun much at anytime in their life. So....it's still a big mystery....as to the cause......go figure....


Title: Re: Grover's disease
Post by: jd1 on Thursday April 13, 2006, 02:26:51 PM
Mepen, I am so happy for you.. progress at last even within the confines of that HMO!  When is your appt?
Title: Re: Grover's disease
Post by: Rich on Monday April 17, 2006, 01:11:47 PM
Hi guys!  I'm completely new to the forum but it is certainly interesting reading all the different posts.  I've had Grover's for a couple of years now; it started out as an awful experience but after I got it under control using Triamcinolone, it's pretty much stayed at bay until recently and that's why I'm re-engaging on my research.  For some unknown reason, I've experienced a flare-up that I'm having a difficult time getting rid of.  Of course, I engage in all the wrong things such as daily workouts causing me to sweat and hot showers.  Should I stop those activities temporarily until I can control the problem or just maintain my lifestyle and get on some type of treatment besides the ointment?  ???
Title: Re: Grover's disease
Post by: mepen on Monday April 17, 2006, 03:41:27 PM
JD, It figures. Apt at NEM fell through. The doc they set me up with is not seeing patients anymore and is currently in a position of adminstration only at the hospital. I have to recontact derm and PCP and see if I can set up with someone else. At this rate, there will be a cure by the time I get through the "confines of the HMO" as you put it. I get hooked up tomorrow afternoon with comcast and will email you directly. I'm wondering how your skin is doing......

Rich, No don't ever stop working out, but yes, I would change hot showers to warm. Grover's does flare with hot showers. As far as getting on a treatment other than an ointment, good luck. That is what we are all trying to figure out....what the "treatment" is that will work. Latest theory is mercury toxicity. Read through the posts. Good luck.

Jimbo, How is your skin doing? With mercury levels down have you seen some relief?
Title: Re: Grover's disease
Post by: jd1 on Monday April 17, 2006, 04:53:36 PM
mepen, I am sorry.  That sucks.  By the time you get through that HMO, we may all be dead.  Forget about a cure.  Talk about an example of the health care process getting in the way of health care itself.  My skin is doing fine.  I am just starting the 2nd week of this 2 week cycle.  Was just at the lab getting blood drawn for the CBC to be sure WBC is ok.  Will have results tonight or early tomorrow.  Glad you will have email again.  I am going offline tonight and will not be turning on the computer for at least a week.  I hope when I sign back on you are connected with some other medical professional who can help.  I will look for your email.
Title: Re: Grover's disease
Post by: Jimbo on Monday April 17, 2006, 06:41:02 PM
Hi Mepen,
I haven't noticed any significant change as of yet. We play volleyball during lunch once a week at work. Last week I sweated buckets playing and I was fine after. No itch. But that could be an isolated incident. It's really much too early to tell yet. My initial mercury reading was 29.4. I guestimate that I'm at about one third of that now. It will take about one month more to bring the level down to zero. So I'm looking at the latter part of May for another blood test. I was hoping to see more improvement by now, but time will tell. JD's on Chemet, I"m on Detoxamin. Let's hope that at least one of these will be the cure we've all been searching for. We should know soon.
Title: Re: Grover's disease
Post by: Rich on Tuesday April 18, 2006, 11:38:13 AM
Wow Jimbo! It sounds like you're making some breakthrough revelations for sure.  Good luck on that.  I'll be looking forward to hearing more about your progress.  My wife is about to finish her nursing degree and has really made me aware of steroids and all their sideaffects so I would rather steer away from them and try something like you're dabbling in.  Good luck!
Title: Re: Grover's disease
Post by: Jimbo on Tuesday April 18, 2006, 02:59:09 PM
Hi Rich,
I haven't experienced anything of any significance that would indicate that this treatment is going to work. The only good news is that I should know one way or the other around the end of May or June some time. I couldn't agree more with your wife. Stay away from steroids as much as possible. I've found a good reasonably priced cream called DermaMed. I don't know where you're located, but it's a Canadian product available in natural food stores here. There may be some better creams out there, but it's the best one that I've found.
Title: Re: Grover's disease
Post by: oldbutdumb on Thursday April 20, 2006, 08:36:45 PM
 :DHi to the whole forum.  I was diagnosed with Grover's disease by my dermatologist about two months ago using several biopsies taken from small pimples on my back.  My case was not severe but they have been present more or less for over 4 monhs.  After the diagnosis I was told that there was no known cure and that sometimes the problem just goes away.  Up till then I had had 3 rounds of Keflex and a month of minicyclene as well as topical applications of Betamethasone Valerate cream (corticosteroid) and Hibiclens solution which also did no good.  At one point I was  told to use an acne remedy which was PanOxyl bar soap (10% Bensoyl Peroxide).  I used this aftr washing with a regular bar soap first.  In both cases I used a large washcloth well saturated with soap and scrubbed.  The acne soap said to scrub for two minutes a day so I dutifully counted a thousand and one to a thousand and 60 twice while rubbing vigourously.. I sure got a tender back.  I also washed my hair with a Denorex shampoo that had coal-tar in it.  My rash got a lot better (no little pussy heads and fewer pimples) but didn't go away all together.  It's been a coulpe of weeks since I did that for a month and the rash now has a few pimples with pussy heads but doisn't bother me enough to start over again yet.  I'm 75 years old and I can recall the simple remedies that my  mother used in the depression days of the 30s when one of us got a rash.  The first was a warm bath in a solution of potassium permanganate (she called it permanganate of potash).  It turned your skin brown as I recall.  I'm a retired chemist and the permanganate is a powerfur oxidizing agent and forms brown manganese dioxide after reacting.  This old remedy might help!  I also recall that when the rash became running sores it was home diagnosed as "impatego"  and a more powerful remedy was used.  It was ammoniated mercury.  She said it was deadly poison if we got it in our mouth so be careful..  It killed strep infections of the skin in the days before antibiotics.  I'll bet there were a lot of old home remedies back then and one of them could be the answer to Grovers.
Title: Re: Grover's disease
Post by: oldbutdumb on Saturday April 22, 2006, 04:39:59 AM
Hi again.  Sorry about my first post.  I was trying to edit/spell check it and accidentally deleted the corrected version.  I am surprised that I haven't gotten any responses.  Most of the forum seems so chatty.  Maybe it's because I,m on a new page by myself.  I was trying to start a new theme of natural remedies from the past.  I looked up a bunch of old 1920s to mid 1930s home medical books at an on-line seller.  I was surprised at the number and assortment of old medical books.  Anyway I was trying to see if what my mother did was generally  known and if the formulas and methods were usable today.  I was surprised by the girl that was having such success with coconut oil.  Just about a week ago I was listening to a gardening program and the "expert" said that you can completely eliminate cobwebs in the corners of your ceiling by spraying them with a mixture of vinegar and coconut oil.  It seems that spiders hate the smell.  I think the vinegar would rapidly evaporate meaning that it serves to disperse and preserve the oil mainly.  That leads me to another conjecture.  The spider is a relative of mites.  Could the coconut oil be chasing away some kind of skin mite that causes the Seborrhea/grovers?  Well if so this could explain why it worked.  Bye for now.  I'll probably have to reenter this because I forgot to log on.
Title: Re: Grover's disease
Post by: totalfolly on Saturday April 22, 2006, 10:28:53 PM
I am surprised that I haven't gotten any responses.  Most of the forum seems so chatty.  Maybe it's because I,m on a new page by myself.  I was trying to start a new theme of natural remedies from the past.

Welcome to SkinCell!

If you're interested in discussing natural remedies, past or present (or future, I suppose) you might want to try posting on the Natural Remedies board instead.

totalfolly
Title: Re: Grover's disease
Post by: oldbutdumb on Sunday April 23, 2006, 06:15:05 AM
Thanks for the response, Totalfolly.  I wasn't used to the forum and got directly to Grovers from a Google search.  Didn't bother to check other threads.  This is a wonderful site.  Whoever designed it must be a computer whiz besides having a broad interest in ailments concerning the skin.  I like to read what others have done to combat their Grovers so I thought my own experiences might be of interest.  I should have left the speculations for a different thread I guess.
Thanks again
oldbutdumb
Title: Re: Grover's disease
Post by: mepen on Monday April 24, 2006, 05:34:32 PM
Oldbutdumb,
Your best bet is to read through the last few pages of posts to bring you up to date with what's been going on with the treatment of Grover's. All of us have been struggling to find a cure. Topical treatments may provide some symptomatic relief but have not offered up any real cure. For a natural path, one patient is pursuing Chinese herbs and has reported positive response. Recent medical research has shown that mercury overload can cause Grover's and there are a number of people posting who are detoxing (eliminating mercury from the body). I would highly recommend that you read their posts
Title: Re: Grover's disease
Post by: kit on Friday April 28, 2006, 12:58:13 AM
I don't know if this helps anyone but I have had Grover's for over 14 years. I have tried many things to combat this disease. I have been to many leading institutions trying to find the "cure".Nothing I tried was my panacea.I had bleeding lesions that were very painful etc. Many things helped the symptoms but not necessarily the disease itself. So I kind of gave up as I had exhausted so many therapies and had had some pretty bad side effects from some of the drugs.  Last year after being out of the sun for 16 years I decided to try tanning in moderation to see if I could dry the lesions out. Obviously my many derms discouraged this. But....I did it. I found that my skin reacted slowly but after a few months the lesions went away completely.It took many months to disappear. I don't know if I'm in the promised "remission" stage, that for me never came as promised, or if the sun in moderation helped. But as of today I have no signs of grovers and am scar free. I have doubts of how long this will last. My derms are amazed at my skin, baffled and amazed. I KNOW that the sun caused my Grover's for sure, so could it possibly cure it in moderation?
Title: Re: Grover's disease
Post by: Jimbo on Friday April 28, 2006, 11:25:44 PM
Way to go Kit. Keep us posted. You know I had considered doing that myself some years back, but worried that I might do more harm than good. Good for you. Wish you continued progress.

Jimbo
Title: Re: Grover's disease
Post by: kit on Saturday April 29, 2006, 02:52:34 AM
Like you I had tossed around that idea of sunning it for years. But thought I must be crazy as the sun worshipping caused this. But after so many years of dealing with derms and drugs and therapies I needed to try another avenue. So far it has been so great for me. But like I said my old friend Grover's may be back with a vengeance one day. How are you doing?
Title: Re: Grover's disease
Post by: Jimbo on Saturday April 29, 2006, 04:35:00 AM
I've been persuing the mercury toxicity route. No doubt you've been following that over the last few pages. I'm presently taking Detoxamin and will go for another blood test around the end of May. So far I haven't noticed any change. How long did you lie in the sun at a time and how often? What was the temperature? Did you put any cream on beforehand? Did you sunburn? Has your Grovers cleared up to this degree before?

Jimbo
Title: Re: Grover's disease
Post by: cdale on Saturday April 29, 2006, 06:15:25 AM
Greetings, I also wondered about the sun as I do not get Grovers on my uncovered skin. Just on my back, upper arms and chest. I am still using talc and have been grovers 'free' for about three months. We are going into winter in Australia so I wont be trying the sun method just yet.  Good luck to all .........Col
Title: Re: Grover's disease
Post by: kit on Saturday April 29, 2006, 03:50:38 PM
I live in Michigan so the summer was dry not humid at all.  I never allowed my skin to burn--I am blue eyed and fair. So I was very cautious. I did not use any lotions or sunblock products at all. I tanned enough to allow my Grovers to dry out. As the tan faded going into winter I noticed my skin had improved so much. I was not willing to do the mercury treatment as the side effects seemed to risky to me. While I hate my Grovers  believe me, it also is not life threatening so I try to keep that in mind. Things could be so much worse.  If this is the disease I have been given then I will gladly deal with it. I too only had the Grovers where the sun had been on my body. Though mine over the years had spread to my legs and upper arms. I do go through many treatments for skin cancer as I have that too from my sun worship days. Some of those chemo drugs have helped it too, but not to the extent my recent sunning has done
Title: Re: Grover's disease
Post by: gsperez on Monday May 01, 2006, 06:02:51 PM
Hi All,
I'm so fascinated by the posts about tanning - not just the idea that it might be helpful (I've often noticed that it improves slightly in the summer but worried that more appeared following the summer season). When I was diagnosed, my dermatologist said they did not know what caused Grovers and that sun wasn't necessarily the cause (unlike actinic keratosis). Have all of you been told sun is definitely the cause?
Thanks
gsperez
Title: Re: Grover's disease
Post by: kit on Monday May 01, 2006, 08:43:56 PM
I have by some docs and by others they say no. I know it was sun exposure  . I lived in Ft lauderdale for 30 years and baked!
Title: Re: Grover's disease
Post by: mepen on Tuesday May 02, 2006, 06:54:24 PM
No, doctors never told me that sun exposure caused the disease. I was told that sun exposure might exacerbate it, but then another doc said a bit of sunshine -- a bit --- may actually be helpful (dries out lesions). In my experience, a little bit of sunshine on my arms and legs is helpful -- 5 to 10 minutes worth in spring or fall --- 5 minutes in summer. You have to try it out, see what works for you.  As it is, I live in NE, so my legs haven't seen the sun in 9 months.

A doctor in Boston told me the cause of Grover's had to do with faulty calcium channel uptake by the skin cell membrane --- something about malfunction in the calcium channel ions and ruptured clefts in the skin cell membrane. It was above my head. Microbiology and chemistry. What causes the malfunction, they do not know. It has nothing to do with dietary calcium. She did say that considering what was going on at a cellular level, I was lucky that all I had was Grover's. Sheesh............
Title: Re: Grover's disease
Post by: jd1 on Thursday May 04, 2006, 08:51:15 PM
Hi everyone,

The most bizarre thing....At the beginning of this long discussion, I talked about my lupus scare - this rash and a positive ANA of 1:5120 (should be below 1:40) made the diagnosis look like it might be lupus.  Once they determined grover's, the rheumatologist said that ANAs will fluctuate, I will likely be positive forever, and not to let future fluctuating highly positive results freak me out.  That was in 2002.

My derm tested ANA last week.  It came back NEGATIVE.  I never expected to see that. 

With the white blood count, I can clearly connect chelation to the correction of my chronically low WBC to normal levels b/c we have been watching the WBC so carefully.  We did not test ANA before chelation, so I don't know that chelation corrected that blood abnormality, but I am left wondering, and can't imagine what else might have caused this welcome result.
Title: Re: Grover's disease
Post by: mepen on Friday May 05, 2006, 02:41:14 PM
Hi everyone. I've been following the posts. In particular, I've been following JD who has been pioneering the way on Chemet therapy. Not only has JD's Grover's cleared after Chemet detox but her blood values previously out of whack (white count and ANA) are now normal!  I consider this truly amazing and that's enough evidence to convince me in the mercury/toxicity theory. My plan of action is to get the amalgams out of my mouth and ask my doc to detox me via Chemet. For those new to the posts and wondering what this is all about, go back and read the previous posts about Dr. Paul Dantzig who links mercury toxicity with Grovers and macular degeneration (and by the way, also with Parkinson's, guttate psoriasis and pustulosis palmaris).

Also, people on the post (me included) have been back and forth with the age-old question about sunning and sundamage and wondering if it causes Grover's. Dr. Dantzig explains it this way: "Grover's prefers sun-damaged skin. Studies have shown that this is due to changes in the basement membrane of the skin.  Mercury is a poison which moves intracellularly and kills the cell by combining with the sulfide bonds in the mitochondria, thus robbing it of any energy. In Grover's, this stops the epidermal cells from producing binding proteins resulting in acantholysis." So that answers it: Yes. It is appears that sun damage is one of the causative factors in Grover susceptible individuals.
Title: Re: Grover's disease
Post by: jrabbit on Friday May 12, 2006, 05:07:16 PM
Hi all,

Yes..its me.. the Chinese medicine girl - I know it's been a while - so I thought I'd give an update.

Things had been going amazing.. but every once in a while - out of seeminly no where.. I was getting huge flare ups..like from nothing to my entire stomach being covered. I asked my chines doctor what the hell was going on and he said that it seemed like a reaction to something i was eating that was causing the reaction - he suggested I go to an allergist to see what foods I was sensitive to and then keep a journal to see if it was related to the Grovers.

And Damn if this wasn't the problem.

According to my allergy tests... I am most sensitive to gluten (wheat), corn, tomatoes, mushrooms, soy and tofu, peanuts, and some others....

2 or my biggest flare ups happened 5 hours after eating peanuts and air popped pop corn.. so even before I tested myself I suspected this was bang on.

Since then I have eliminated all the food I am sensitive to and have been totally clear for about 2 months now.. I am taking hot showers, exercising profusely and sweating, not using talc, or using any topical treatment of any kind. I still go for acupuncture to strengthen my immune system but I am done drinking the herbs.

And I still feel fantastic!!!

So - again.. not saying that the natural medicine way is right for everyone.. but perhaps some of you may want to look into the role food plays in this disease.. and I would also recommend you do some reading on a condition called Candiastis and see if you qualify..... I think this is what caused the grover's in my case.

Good luck everyone
Title: Re: Grover's disease
Post by: stuartpierce on Saturday May 13, 2006, 06:46:07 PM
FYI, I've been taking Food Science Chelation Factors 3x daily for 1 month (525 mg DMSA / week).  Ingredients are:
Supplement Facts Amount Per Serving

Vitamin C 200mg, Vitamin E 100IU, Zinc 10mg, Selenium 50mcg, Sodium 10mg, Chlorella 100mg
Contains: Chlorella 100 mg, Sodium Alginate 100mg, N-Acetyl Cysteine 50mg, L-Methionine 50mg, Cilantro 50mg, Garlic 40mg, Alpha Lipoic Acid 25mg, DMSA 25mg.

Ingredients: rice flour, vegetable cellulose, vegetable stearate.

Have not had any mercury level testing.  So far, no improvement.

Stuart
Title: Re: Grover's disease
Post by: jd1 on Saturday May 13, 2006, 07:05:40 PM
Hi Stuart, it will be interesting to see how this works for you.  Dr. Dantzig's dosage for Chemet is 1/2 less DMSA than the amount per PDR (assuming that I did the math correctly).  Even with that, for me it came to 600 mg DMSA per day.  You are getting less than that per week, and you are probably larger than I am.  Please let us know how you do.  Maybe you will have to be patient with it since you are getting so much less of the chelating ingredient per day.  Good luck!
Title: Re: Grover's disease
Post by: stuartpierce on Monday May 15, 2006, 03:54:23 AM
Thanks, I bought a 3-month supply, and I'm planning to see it through.

Stuart
Title: Re: Grover's disease
Post by: bookbear on Thursday May 18, 2006, 03:20:53 AM
This is breaking the thread just a bit, but does anyone know if Grover's will fluoresce under a black light?  I know some kinds of bacterium will do so, and exams under a black light are part of the diagnostic procedure. I was diagnosed with Grover's two years ago, but quite by accident today I saw the (so-called) Grover's lesions under a black light....and they fluoresced.  Just curious.
Title: Re: Grover's disease
Post by: cheryl on Saturday June 03, 2006, 02:48:47 AM
My husband was diagnosed with Grover's disease.  He is miserable!!!!  He has been exposed to alot of sun throughout his life; boating, fishing etc.  Also, he has always had dry skin.  His dermatologist has told him to use a steroid creme, but that only masks the symptom.  I have been reading some of the postings and I believe that mercury could have something to do with this disease.  I have read that Grover's disease only lasts 6 to 1 year, but many of the members are saying they've had it for years!!! 
Is there any relief for this disease? Please reply.

Cheryl
Title: Re: Grover's disease
Post by: cheryl on Saturday June 03, 2006, 02:56:04 AM
I forgot to mention that my husband was diagnosed with shingles 3 years ago.  Has anyone had shingles prior to the breakout of Grover's disease?

Thank you.

Cheryl
Title: Re: Grover's disease
Post by: Jimbo on Sunday June 04, 2006, 02:32:49 PM
Hi Cheryl,
Welcome to skincell. I have never had shingles, but I've had Grovers for 18 years now. I was told by a derm when I first contracted it that in 80% of cases it was transient. Mine hung around for 9 years and then got worse. Look into the mercury connection and the findings of Dr. Dantzig. That seems to be the best lead that we've had thus far toward a cure. Dr. Dantzig's findings are relatively recent and some of us here are currently trying different forms of chelation to eliminate mercury toxicity. Keep following this board. There are lots of very supportive, knowledgeable, and industrious people here.

Good luck,

Jimbo
Title: Re: Grover's disease
Post by: mepen on Tuesday June 06, 2006, 02:03:09 PM
Hi Everyone,

Me again. Your fellow Grover's sufferer of 10 years. I have just begun the chelation therapy with Chemet (just over 24-hours into it) and I am following the protocol prescribed by Dr. Dantzig. My PCP read through all of Dantzig's info and said, "Yes. Let's try it." I have tried everything else, so what could I possibly have to lose? Hopefully, I have everything to gain. Dantzig is not a crack-pot but a reputable, smart practicing dermatologist who has done extensive research on this.

Cheryl, No, I never had shingles. Yes, steroid creams are useless in this disease. It is a disease that manifests from the inside out. For itching, have your husband try Band-Aid Anti-Itch Gel from Johnson & Johnson. This has provided relief from itching for me when the Grover's flares up but it is not a cure. Don't waste valuable time with steroids (oral or topical) or topical Dovonex or Tazorac. These are therapies that I have used, many prescribed by the best doctor's in Boston, and they are useless.

I will post again in a week or two and let everyone know how I am doing with the Chemet.


Title: Re: Grover's disease
Post by: marsham on Tuesday June 06, 2006, 09:48:25 PM
Hi I'm Marsha,

This forum is great.  I am a 58 year old female.  I was diagnosed with Grover's in January.  I have been dealing with it for almost 20 years now.  I just didn't know that it had a name.  Up until recently I had mild outbreaks that didn't last very long.  Only on my right torso.  On one of my many trips to the Dr. I was given a sample of "Aqua Glycolic" Hand and Body Lotion(that is basically Alpha Hydroxy).  If I applied it to the area right when it was starting to come out, I could stop it from coming at all.  That worked for several years.  However, in November it showed up in my scalp and other places and I could not stop it.  It has been awful since then and that is when I got on the internet and found this forum.  I have tried several of the over the counter ideas I have seen posted.  Of course nothing makes it go away but Calamine lotion seems to help me alot. I have also found another source of great relief.  My pharmacists suggested taking Claritan 24 hour or Benadryl.  So I have been taking the Walmart equivalent of 24 hour Claritan daily for about 3 months now for the itching.  It has made a profound difference in my quality of life.   I hardly itch all day although the evening time seems so always bring out the worst in this condition.  I hope this will work for some of you too. Giving up hot baths and taking cool, quick showers seems to pacify things too.   I am seriously considering the chelation route too.  I was hoping health insurance would cover it but I don't think that is going to be the case.  What kind of Dr. does Chelation treatments?

Thanks for all input.
Marsham
Title: Re: Grover's disease
Post by: mepen on Tuesday June 06, 2006, 10:12:51 PM
Read through the past posts and get Dr. Dantzig's research. It explains why the chelation. The type of chelation therapy he uses is Chemet. Chemet is prescription only and you need to be under a doctor's care with this drug. My insurance is an HMO and is covering the cost of therapy. In the end, my PCP prescribed it when a dermatologist said "no." My PCP has been my doc for 20+ years and he is conservative but he has seen this disease progress on me for a decade. When I gave him all the research, he read it through and agreed it is worth a try and is hopeful it will work. He is following my case carefully with blood labs every week. I am very hopeful as JD pioneered the way and she has had positive results. If you have had this disease for 20+ years, I think a good doc who is wiling to read the research, will agree it's worth a try and will prescribe and follow you. You have nothing to lose but the Grover's.
Title: Re: Grover's disease
Post by: gsperez on Tuesday June 06, 2006, 11:16:20 PM
Hi All,
And welcome Marsha. Mepen and anyone using the Chemet - what is the hoped outcome in terms of skin symptoms with this? I ask because with my Grovers symptoms, even when I'm not currently having a really bad outbreak of the itchy, painful rash, I always have the sort of "scabby freckles" (for lack of a better description). Is there hope that those could go away too - or just a stop to the rashy outbreak?

Thanks!
Georgia
Title: Re: Grover's disease
Post by: jd1 on Wednesday June 07, 2006, 12:14:29 AM
Bookbear:  I just took a look at my biopsy reports.  Negative immunoflourescence.  It was specifically tested, having to do w/ Lupus.  Are you thinking that you have some other disease?

Georgia:  Scabby freckles are gone.  Pigmentation from old lesions are visible.  I have been told by derm that these will fade.  They don't bother me at all and don't look weird.

Marsha:  I would not have been able to find a conventional doc to do chelation based upon a simple request.  To echo mepen, get a copy of Dr. Dantzig's research (mitch tells how to find it several pages back, try page 13), and then plan on really having to make your case.  Mepen and I presented our cases knowing what we wanted and exactly the reason behind the request.  Neither of our docs were at all familiar with this treatment for Grover's.  I don't think either of them have used Chemet before.  If your hg blood test comes out normal (less than 10), then you will have to convince the dr that people have been having success even w/ "low" levels of mercury in blood.  My grover's was constant and extensive w/ blood mercury levels less than 4.  mepen's started out at 5.  As said in previous post, Dr. Dantzig said that he has treated someone w/ an acute case w/ blood levels of only 1.5.  Don't expect your doc to know.  Do your research and then present your case.
Title: Re: Grover's disease
Post by: BAC on Wednesday June 07, 2006, 05:51:16 AM
Just registered and now 1st attempt to participate in a forum.
Hello all fellow sufferers! I have Grovers and have been reading this forum which unfortunately did not give me much hope!  I was diagnosed about 4 years ago and have had several minor bouts of the itchy rash in the small of my back. They seemed to pass in about a week - I used hydrocortisone for relief. The last one was about 6 months ago. That was then.

For the last week, I have an attack covering my whole torso (including those areas normally protected from the sun!) back of my knees, but not on my face or within my hair.  I am 59 yo male, generally good health etc so am in the target group. I am using the hydrocortisone and LPC in Ecolan creams and am not happy about it over such an extensive area.

I am convinced this and a previous attack was initiated by heat trauma. About a year ago, on holiday GD appeared after enjoying a hot spa. This time, following shoulder surgery, I have my arm in a sling strapped around my waist to immobilise my shoulder. The sling is foam with a brushed nylon cover and caused a tremendous heat build up producing an angry rash on my side and arm which I thought was a heat rash (I have not had a Grovers attack for some time and had actually forgotten about it). The rash started under the sling and in 24 hours was having a great time invading the rest. I have been using the steroid cream for the week with temporary relief (2-4 hours) before the itch returns with a vengeance. Heat initiates/provokes and cooling eases the intensity.

Having this experience, and seeing other's stories in this forum, makes me hope for an early and long remission.
Title: Re: Grover's disease
Post by: JoeM on Thursday June 15, 2006, 12:29:59 PM
Hello Everyone,

Grover's sufferer here...does anyone have an update on the chemet and the mercury in the body? Jimbo, are you having success?

In addition, has anyone had any success with Donovex, or am I wasting my time? I do relize that whats works for someone might not work ofr others, however, I just need one person to tell me that they had some success using this product.

Joe
Title: Re: Grover's disease
Post by: mepen on Thursday June 15, 2006, 12:57:26 PM
Read through the past posts. jd1 has had success with the Chemet. I am currently on the Chemet (10 days into it). Too soon to tell. No side effects other than smelly urine (sulfur smell). A bit of heartburn right after dosing but I can eliminate this side effect by taking the drug with a full glass of water (this is recommended, anyhow) and with food and/or meals. Chemet is prescription only and you need to be under a doctor's care when taking the drug. Get Dantzig's research and read it through. Copy it and give it to your doc or derm and plead your case if you want the drug. I will post again and update whether the drug does or doesn't work for me.

Title: Re: Grover's disease
Post by: mepen on Thursday June 15, 2006, 01:03:36 PM
JoeM
In reply to the Dovonex:  It was a waste of time for me. It didn't make the Grover's worse (like steroid cream when you discontinue it) but it didn't make it any better either.
Title: Re: Grover's disease
Post by: Jimbo on Thursday June 15, 2006, 08:04:17 PM
Hi JoeM,
I haven't posted in a while simply because I have nothing new to report. Since Chemet is not available in Canada, I'm on Detoxamin which I'm guessing is a less powerful alternative. I've been on it for three and half months now. The Grovers is still there. I went of a blood test after 3 months to see what my mercury level was down to, but I haven't received the results yet. This is taking longer than I had originally anticipated. I will post again when I get my blood test results.

Good luck,

Jimbo
Title: Re: Grover's disease
Post by: JoeM on Thursday June 22, 2006, 04:02:34 PM
I can not get to the link about the info on Chemet and Grover's...I typed in all the information on page 13 and still no luck. Can anyone help me or get me the information? I would like to know more about the use of this drug and the diet used in conjunction with the drug.


Your help is grreatly appreciated

JoeM
Title: Re: Grover's disease
Post by: JoeM on Friday June 23, 2006, 12:52:29 AM
Jimbo,

The elimination diet that you were on back in Novemeber...is this the diet that is to be used when taking chemet? That diet is totally all over the board and makes no sense...
Title: Re: Grover's disease
Post by: mepen on Saturday June 24, 2006, 12:37:47 AM
JoeM
You do not have to follow a special diet while on the Chemet. It is recommended that you do not eat seafood that is high in mercury during the course of Chemet therapy because Chemet is used to eliminate mercury and it would be senseless to add to mercury burden while trying to eliminate it. The article about mercury toxicity related to Grover's was published in JOEM (Journal of Occupational and Enviormental Medicine) and the researcher and author is Paul Dantzig a dermatologist from NY, NY. Title is "Age-Related Macular Degeneration and Cutaneous Signs of Mercury Toxicity" by Paul Dantig, Department of Dermatology, Columbia University,School of Medicine, New York, USA. (Cutaneous and Ocular Toxicolgy, 24:3-9,2005) It may cost you to purchase the article online through JOEM or PubMed because you probably need to subscribe to those publications.
Title: Re: Grover's disease
Post by: JoeM on Tuesday June 27, 2006, 11:36:58 PM
Mepen,


I sent you my e-mail address               email address removed             

Thanks for your offer in helping me get the article. Are you having any success with the chemet?
Title: Re: Grover's disease
Post by: mepen on Wednesday June 28, 2006, 01:27:02 AM
I have been on Chemet three weeks. I have to say it is helping. I have not been flaring or itchy and that is a positive response considering how hot and muggy the weather has been. After a shower, the lesions aren't as red and soft and open as usual. So yes..so far...so good...but not yet clear or "cured." From what I understand, clearing mercury from the body is a long process, so I will have to be patient, especially with regards to the Grover's. I will keep posting with updates.
Title: Re: Grover's disease
Post by: Jimbo on Wednesday June 28, 2006, 03:23:46 AM
The chelation goes on. My mercury level started out at 29.4. After a month of Detoxamin it was down to 17.4. I went for another mercury blood test after two more months on Detoxamin at the end of May. I just got the results today. Mercury level down to 6. I've been on Detoxamin for a month since that last reading so I must be down lower than that by now. I finish 4 months today and will begin a fifth month tomorrow. I will continue with the Detoxamin for another month and then go for another blood test. There seems to be improvement in the skin condition, but to be certain I'll have to reserve judgement for at least another month. I will probably continue with the treatment for 6 months in total. That will take me to the end of August.

Good luck to all,

Jimbo
Title: Re: Grover's disease
Post by: itchyscratchyme on Thursday July 13, 2006, 12:28:10 AM
Help somebody!
I started 3 mos ago with an extremely itchy rash on my back.  I have been to the dermatologist numerous times with numerous medications, biopsies, and scrapings.  My latest diagnosis was Grover's disease.   They say this usually occurs in older men.  I am a middle aged girl with this so-called disease.  Anyway, the itch is basically gone and my back has cleared up pretty well, but now the rash is spreading to my thighs and stomach.  Does anybody know if this sounds like what Grover's disease does and could I possibly have something else?  I heard that Tetracycline can be used to heal this too.?

Any suggestions would be greatly appreciated.
Thanks.
Title: Re: Grover's disease
Post by: Jimbo on Thursday July 13, 2006, 01:29:12 AM
Hi ItchyScratchyMe,
Grover's does usually appear more often in white males over 40 with sun damaged skin, but judging from the posts here it can occur in people who do not fit any of these criteria. In many cases it is transient and may go away on it's own. If I were you I'd consider getting a second opinion to be sure that it is Grovers. However, my experience has been that derms usually don't like seeing you if you're already seeing one of their colleagues. Furthermore a biopsy would likely go back to the same lab anyway. Some people have been having success with mercury chelation. Please go back to page 13 and read the posts on the ensuing pages. A Dr. Dantzig in New York has found a connection between Grovers and mercury toxicity. Several of us are currently undergoing chelation therapy and we should have some definitive answers within the next few months. If you have any more questions regarding this relatively new treatment, I suggest that you address them to this site and someone will help you out. You're first step is to go to your doctor and get a mercury blood test.

Good luck,

Jim
Title: Re: Grover's disease
Post by: itchyscratchyme on Friday July 14, 2006, 06:54:11 PM
Hi Jim:

I don't know if you got the last message or not - computer cut me out somehow.  Anyway, mercury toxicity?  How can you get that besides through dental fillings???  I haven't had fillings in at least 20 years so I think I'll rule that one out. 
Thought about getting another opinion but it seems to be subsiding somewhat so I think I'll wait for a while and hopefully it will just disappear.  Thanks for the input though.

Good luck!
Title: Re: Grover's disease
Post by: cdale on Saturday July 15, 2006, 05:58:44 AM
Greetings all, Just to let you know there can be a transient side to grover,s. I have been grovers free for about 6 months. I use a rash talc and that stops my itching. i do have a dermitis on my back and sometimes on the hands. I was wondering about the grovers and mercury. Could the amount of mercury be related to the intensity of the grovers. I had my mercury checked and it was less than 1 nmol/l    (< = 50) ?  . Iam not sure what this means but my doctor left a message "no further action reqd." :D   I hope this holds for me.  Good luck to all.  Col
Title: Re: Grover's disease
Post by: jd1 on Saturday July 15, 2006, 09:00:28 PM
Hi itchyscratchyme and cdale, The thing about the mercury toxicity connection is that Dr. Dantzig has had success in almost 100% of the people he has treated.  His research clearly ties mercury, Grover's, and macular degeneration.  Where to find research paper online is explained in previous post by Mitch.  Dr. Dantzig has done a ton of research in this area.  As I relayed in previous post, he had one patient come back with a serious flare with blood levels of only 1.5 who cleared w/i 1 1/2 weeks.  If you do some research re the methods for testing for mercury toxicity, you will see that there are no good methods.  What mercury in the blood indicates is that there is mercury circulating in the body.  It does not measure mercury deposited in the tissues. 

cdale, congratulations on Grover's being gone, that it wonderful.  If it comes back and you want to explore this option, then please know that just because your blood levels are below some arbitrarily established "acceptable" level doesn't mean that the mercury is not causing your disease.  If you do some reading, you will find mercury referred to as the second most toxic metal.  Any mercury in the body does damage.

itchyscratchyme, I had only 3 amalgam fillings from 20 years ago, blood levels of less than 4, and persistent Grover's for 10 years.  It is now gone.  Sources of mercury include seafood (I am sure you are aware of the ongoing discussion of the impact of the pollution on our seafood. Most recent article I've seen was in last month's Gourmet magazine, where the author also discusses factories' ability to filter the mercury, but that would cost money, and they are not required to do so), pollution (did you see the article in the Wall Street Journal about how the recycled mercury from the US winds up in Bolivia - I think - where it is burned in the process of mining for gold and then goes up into the atmosphere where it circles the globe up to 4 times before it comes down as polluted rain), thimerosol in vaccines (tons of information on this related to the poor autistic children.  Apparently it acts as a preservative so the vaccine manufacturers are allowed to use it so they can make more money), some household goods, cosmetics, and cleaning supplies (for some reason manufacturers are not required to disclose the mercury or mercury derived ingredients).   That's all I remember right now.  The point is that mercury is just one more type of pollution prevalent in our world, but it is the specific toxin that one really smart dermatologist managed to tie to and successfully treat our disease .
Title: Re: Grover's disease
Post by: dupton on Tuesday July 18, 2006, 12:22:23 AM
I wish I had found this string of postings earlier.  I posted this on different section.

"I am a forty something male.  I was diagnosed with Grover's Disease about eight years ago.  I have had the symptoms for about seventeen years.  My memory is that it started with one itchy red spot in the middle of my body about five inches above my navel.  This was several weeks after my wife and I had tried a tanning salon three or four times.  Since then it has spread to the middle of my chest and across my midsection but never below where it first appeared.  The spots have also appeared on my back around my shoulder blades and around my sides about where my kidneys would be.  The spots intensity and itchiness comes and goes but never fully goes away.  For me it is worse in the winter when I have to wear warmer clothes.  I am not under any medication, my derm has not proscribed any, nor does he believe there is a cure.  The only control I use is baby-powder which controls the itching and burning.  Sweat and heat are what activates the irritation that can lead to bleeding sores.  I have not found any true relief from this disease."

I will add that I believe the disease is also on my lower legs and lower arms but only as an ugly rash rather than open sores like I experience on my chest and sometimes on my back.

Would like to here more on this because I'm at a loss on what to do.  The diet sounds interesting.  I guess missery loves company.

Thanks,

DUpton
Title: Re: Grover's disease
Post by: jd1 on Tuesday July 18, 2006, 04:33:53 PM
dupton,  a doc in NY, Dr. Dantzig, has had amazing success treating this disease.  His research and methods, my success, and the experiences of others who are in process are explained beginning on page 13, where Mitch posts how to find the research article.  Start reading, advocate for yourself, don't just assume b/c a doc says no that you should accept it, and good luck.
Title: Re: Grover's disease
Post by: JoeM on Sunday July 23, 2006, 04:40:24 PM
Hello everyone,

It has been a few weeks since I have posted. Just wanted to give everyone a quick update...I went to see Dr. Dantzig himself, I reside in Philadelphia, so it was definitly worth the 1.5 hour train ride to see if there was a cure for this skin disease we all know to well as Grover's.

Dr. Dantzig is very confident in his research relating Grover's to mercury toxicity, I brought with me my labs and mercury level results (which only were <4) and he immediatly wrote me a script for Chemet. Neither my PCP of my current derm would! I just finished my 1 week of the Chemet today, so far no improvement, but he said it would take a few weeks and he wants to be on this med for 3-6 months. Dr. Dantzig said so many people have been contacted him about Grover's, so I'll owe all of you on here (if this drug works) a big thank you for bringing this information to this site.

JD...I have a couple of questions for you...how long where you on the chelation therapy? When did you start seeing improvement? How long have you been free of Grover's now? and congrats by the way...Can you e-mail me?




Title: Re: Grover's disease
Post by: jd1 on Sunday July 23, 2006, 08:30:03 PM
Hi Joe,
Lesions were less angry after wk 1.  More angry, but not as bad as normal, after wk 2.  Discouraged.  By end of wk 4 skin looked great, but I had white blood count of 1.6 and had to stop.  Wk 5 skin was a mess and I was ****** ( :o Ed Bot! :-X).  WBC recovered.  I started up again on wk 6, new cycles of 2 wks on and 2 wks off.  WBC was able to handle that.  After what would have been a solid 2 1/2 months on Chemet my skin stayed consistently really good.  So for me that was probably 4 months of treatment b/c I had to take the breaks.  Sometimes I see little pin pricks on my tummy, they don't itch, and they do go away.  I think it's been at least 3 months now.  Hot showers don't hurt, I can sit in the hot tub, saunas feel good, I am wearing normal t shirts, I can decide what I want to wear to a dress-up event days before instead of deciding that night based upon what my skin is doing.  I don't itch.  I still don't believe it even as I type this. 

I am continuing chelation for another couple of months w/ Chemet and ALA a la Autism Research Institute (ARI) and Andy Cutler and with Dr. Dantzig's approval.  Don't do ALA until circulating body burden is greatly reduced.  This is not a chelation website, and I am doing it for general health reasons, not Grover's, so I am not going to go into a lot of detail here, but the ARI 2001 position paper and Culter's book at noamalgam.com explain what I am doing. 

I can't tell by your email if you want to talk privately.  If so, you can contact me through this website (we all have private in boxes) or mepen has my email.  I hope this works for you.  I think our job is to try this out, experience relief, and then get the word out so that others don't needlessly suffer.
Title: Re: Grover's disease
Post by: ARNIE on Monday September 04, 2006, 03:55:12 PM
HI ANY ONE

GROVERS DISEASE HAVE ANY ONE OF YOU TAKEN AN ANTIBOTIC CLINDAMYCIN??
Title: Re: Grover's disease
Post by: mepen on Friday September 08, 2006, 01:57:00 PM
No I have not. What are you referring to? Clindamycin as a cure or cause?

I've been detoxing with Chemet. 2-weeks on, 2-weeks off. (Read the past posts) So far, I'm very pleased. My skin has never looked better. Definitely onto something. I'm hoping with more rounds and getting the mercury eliminated, I'll be able to clear completely.
Title: New Guy
Post by: Sundowner on Sunday September 10, 2006, 12:37:01 PM
Hello All.  I have been looking for a forum of Grover's players and I'm very glad to have found this one.  I have already learned more about this fun little skin disease from just the few pages I have read so far than I have from my dermatologist and other reading.  I have some questions, but I need to finish reading the rest of the forum pages in case the answers are in those.

FYI, I am a 59 y/o white male, nearly 60.  My classic Grover's symptoms began about 5 months ago.  Biopsy confirmed Grover's.  My derm has tried several steroid treatments--no help.  Until the "silver bullet" is found to cure this, I'll mostly be looking for things to avoid making it worse and things to use to suppress the itching.  I'll come back later with questions.   Good to be aboard, I guess :)

Chuck
Illinois, USA 
Title: Re: Grover's disease
Post by: jd1 on Sunday September 10, 2006, 04:12:10 PM
Hi Chuck, welcome.  Save yourself some time and start about half way down on page 13.  Mitch found an article by Dr. Dantzig associating Grover's with mercury toxicity and damage to skin, often from sun.  My disease has been relentless for 10 years.  My skin has been healthy for about 5 months - for the first time in that 10 years.  Dr. Dantzig has had a very high success rate treating this disease.  Mepen, Jimbo, and Joe are in process with his treatment or forms of it (Jimbo is in Canada and can't get Chemet there).  I believe this is the silver bullet cure you mentioned.  Be prepared however, I am not the only one who experienced tremendous resistance from the docs when I brought this research to their attention.  Mepen and I both had to do a lot of research and convincing of the docs to try this, and Joe ultimately simply got a referral to Dr. Dantzig.  Good luck, keep in touch.
Title: Re: Grover's disease
Post by: Sundowner on Tuesday September 12, 2006, 12:55:49 AM
Thanks for the info JD.  I found the article, as well as some other related things.  If Grover's looks for people who have been exposed to the sun, I am guilty (golfer, boater, fisherman, etc).  If mercury is also a factor, do I need to get a blood test for my mercury level?  If so, what's the best way to do that (e.g family doc, my derm, etc)?  And what is the test called?  Knowing my dermatologist, I'm going to need to build a case.

I can't imagine living with this stuff for 10, 20, years, etc as some of you have done.  You all are tough people to say the least.  If you are finally free of its grip, that must be wonderful for you.

Chuck
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 12, 2006, 10:53:15 PM
Hi Chuck.  I am not tough.  They don't offer skin transplants for this disease, or I would have signed up.  I am tenacious.  You need a doc who will be willing to try the treatment and monitor appropriately for potential side effects.  Also, do your research and find your sources of mercury exposure so you can eliminate or at least minimize them.  I believe Dr. Dantzig starts out with a blood mercury level.  The "accepted" level is up to 10, mine came back less than 4 (I believe mepen's first test did also), so don't let your doc do a blood test and tell you that your levels are within range, therefore chelation won't work.  Ultimately my derm helped me out.  Mepen finally got help from her family doc.  Do you have a doc who will be willing to prescribe Chemet for you and who will order the appropriate blood tests?
Title: Re: Grover's disease
Post by: Sundowner on Wednesday September 13, 2006, 12:16:20 AM
Hi JD.  No, I do not know a doc around here (yet) who would be willing to take much of a chance.  Too bad I didn't get this 20 years ago.  In my first career I was a fighter pilot in the Marines.  Our flight surgeons would prescribe absolutely anything if they thought it would help, but they weren't worried about the liability exposure.  I'll work on it.

Meanwhile, I need to find the best thing to suppress the itching.  I've tried a lot of creams, lotions, and powders so far.  The best I've found are several things that give me about 4 hours of relief max--Gold Bond cream or lotion, Caladryl, and the prescribed Triam cream.  Know of anything better?

Thanks!

Chuck     
Title: Re: Grover's disease
Post by: jd1 on Wednesday September 13, 2006, 01:14:10 AM
Chuck, the question of what suppresses itching is discussed to death on the first 13 pages.  No silver bullet there, I'm afraid.  Jessica
Title: Re: Grover's disease
Post by: playagirl on Wednesday September 13, 2006, 10:26:27 PM
For those of us that are new to this forum we're still trying to figure this all out. If I could get relief for four hours I would be in heaven, at best it's only about two hours. I'm on Accutane and it is helping but very slow.I live in Mexico and my derm doesn't know anything about the connection to mercury but is willing to look into it. Thanks to everybody on this forum for all the info. I finally don't feel alone.
Title: Re: Grover's disease
Post by: jack G on Thursday September 14, 2006, 04:29:30 AM
I think I have some good news for many of you grover's sufferers.  About three weeks ago I was diagnosed with Grover's on my chest and belly.  The itch is as many of you describe - I couldn't imagine living with it for as long as some of you - years and years.  Anyway I had already discovered that tee tree oil reduced the itch like nothing else for up to 4 to 6 hours between washings with pine tar soap.  Nothing - hydocortisone or anything else I saw posted worked for me.  Still the itchings coming and going was maddening.  Then I saw the posts linking mercury.  I went to several sites and looked at the nutritional suggestions for those about to start chelation.  I decided to take some of the recommended supplements to see what might be the effects - thinking that I would perhaps need to remove my last two amalgam fillings and go on the chelation therapy.  Well, my itching went away within days - 90% the first day.  The pimples receded day by day.  Now about 10 days into the supplementation the pimples are virtually gone.  I can wear any clothing; I can jog and sweat - and no more reddening or itching.  I expect the grover's to be completely gone or in permanent remission within the next week or so.  I took four or five things, but it was soon evident that 1 thing was making all the difference:
Chorella - the seaweed that reportedly sucks up mercury and other toxic metals did just that.  It was recommended to start with 10 to 15 grams spaced throughout the day and with meals - but to build up in case of a bad reaction to which some people apparently are prone.  I found 6 to 8 grams was sufficient to stop the itching immediately - although it's possible I had a less severe case than most of you out there. I also found it worked better for me on an empty stomach.  Also I take much other supplementation, so I don't know for sure if it needs other supplements to be most effective.  One night when I started to itch however, I took 2 grams all by itself and the itching ceased immediately.  Try it, it might be a life saver for many of you out there.
I had some pills when I started and now I've ordered and received from link removed  Jarrow (japanese) chlorella powder which seems very potent.  Good luck to you all.

Jack G
Title: Re: Grover's disease
Post by: mepen on Thursday September 14, 2006, 01:53:01 PM
Hi,
John G: Yes, there are numerous ways to chelate and rid the body of mercury. There are a number of books and articles on this subject (Andy Cutler is one big name). However, I would encourage everyone to push their docs or derms for the Chemet. Why? You get a pharmaceutical grade chelation agent and you have a doc following you along with the proper blood/chemistry tests. Plus, this treatment becomes recognized by the medical community and if the docs see that it works, it will become a standard treatment for Grover's.
Melissa
Title: Re: Grover's disease
Post by: jd1 on Thursday September 14, 2006, 05:09:24 PM
Hi John,

Welcome.  Congrats on getting immediate relief after just three weeks.  There were a couple of points in your email that caused me concern and I feel compelled to post.  I want to emphasize that I am sure there are several effective ways to chelate.  And I am not an expert in this area.  This subject matter - Grover's, mercury, types of chelators - could not be further away from my normal body of knowledge. 

Many cases of Grover's are transient, and it could be that yours is more responsive than the disease of those of us who have had it constantly for a long time.  My concern is re chlorella.  Many people swear by it.  If you keep reading, you will find many who have expressed great concern.  Again, not my area of expertise, so please forgive any misunderstandings by me, but my understanding is that true chelators have two of a certain type of molecule that bind firmly to mercury to remove it from the body.  Chlorella only has one of those molecules with the result that it can wind up moving mercury through the body and then dropping it before it is excreted.  The other concern is that chlorella can absorb mercury from where it is grown and then deposit it into the body.  Andy Cutler has posted that he personally knows people with serious permanent neurological damage due to using chlorella, and he has posted a few choice words about one of the online docs who sells it. 

I live in a part of the US that is pretty liberal, somewhat hippy, and I take alternative treatments as necessary - Valerian or Calms Forte to sleep, Emergen-C if I'm getting sick, DGL for heartburn, so it's not like I am against alternative treatments.  I just think that it's so important when embarking on something this serious - removing mercury from the body - to really be sure to do all of the research and be careful.  There is a ton of research on mercury removal, especially associated with the autistic kids, where the impact is so much more important than it is even to those of us with Grover's.  Chemet is not benign: I have posted several times re my scare with neutropenia.  But the potential side effects are known and can be monitored.  Please be careful.  Jessica
Title: Re: Grover's disease
Post by: jack G on Thursday September 14, 2006, 08:10:23 PM
Jessica,
Thank you for that post.  It does put me on guard.  I have not seen any of these warnings anywhere and I followed two alternative sources I think are quite reputable.  I might experiment and go off the chlorella to see if any of the grover's returns.  Other sources on the other hand do suggest chlorella is quite healthy on its own beyond the use for mercury.  And it doesn't strike me as logical that the mercury absorbed by the chlorella - if that's what's happening, would likely get deposited somewhere else, but more likely eliminated - as 90% of it as I understand is eliminated by the body through the stool.  Nor do I think mercury would be ingested with the chlorella and not get detected by the Japanese companies who are marketing it.  At any rate I think I will watch the quantity I ingest - back down at least to the 3 grams recommended for normal supplementation, as I understand it.

-Jack
Title: Re: Grover's disease
Post by: mepen on Friday September 15, 2006, 02:02:09 PM
To reiterate:  Taking chelating supplements on your own and not under a doctor's care can be dangerous.
Title: Re: Grover's disease
Post by: jack G on Friday September 15, 2006, 08:20:46 PM
Thank you,
As of today I'm off and watching.  Thanks again.

-Jack
Title: Dantzig Article
Post by: Sundowner on Monday September 18, 2006, 10:18:40 PM
Hi JD,

As you posted on Page 13, I searched for "Cutaneous and Occular Toxicology, 24: 3-9, 2005".  That took me to a page and I clicked on "Age Related Macular.....etc", which got me to a page by Taylor & Francis Group that had a short abstract of Dr. Dantzig's article.  It appears that it is a 6 or 7 page article.  Is that the full article we are looking for?  I can buy it from this site for $30, which is fine.  I just wanted to make sure what they have is what I'm after.

I had thought I had gotten it before, but it wasn't it.  Knowing my derm, I am going to have to show him firm evidence from other physicians that this therapy shows results.  So this article and anything else from doctors, studies, etc is what it's going to take to make docs around here think out of their comfort zone.

Thanks!

Chuck
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 19, 2006, 04:30:55 PM
Hi Chuck,

That's the article.  If your doc's like the few that I spoke with, you will also have to explain that Dr. Dantzig has continued to treat others with a very high success rate (I believe that at the time he said he had treated about 30 people and only 1 didn't respond), convince your doc that a blood Hg level that is 10 or under does not mean that you are not mercury sensitive or rule out mercury as the cause of your disease, (there's a lot of info online re the limitations of all of the mercury tests), convince your doc that Dr. Dantzig's protocol is safe (his dosage is actually much less than the amount stated in the PDR) and that the potential side effects can be monitored with blood tests (as recommended by Dr. Dantzig) and therefore there is nothing much to lose and everything to gain. 

I know what you mean about the docs thinking outside of their comfort zone.  I used to go in and state that the disease is related to sun damage - so obvious - and I swear they would look at me like I was nuts.  It was already pretty much an established fact, and have I mentioned, obvious?

In retrospect, one thing that may have helped me secure a doc's help faster may have been to point out the other things that weren't right that I now believe were related to mercury.  My insomnia has been critical for 8 years, and since chelating has lessened dramatically.  The other thing was that my white blood count slowly kept going down over the last 6 years.  When it came up to "normal" levels this past year, I did some reading and found some research stating that mercury can kill white blood cells, causing chronically low levels.  Point here is that if you take a look at other oddities about yourself, you may find additional links to mercury sensitivity/toxicity.

I will email mepen and see if she has any other ideas for you re how to convince your doc.  She worked on it for months.  Good luck, Jessica
Title: Re: Grover's disease
Post by: Sundowner on Wednesday September 20, 2006, 02:40:00 AM
Hello Jessica,

Thanks.  I got the Dantzig article.  I also appreciate your other insights, such as the mercury rationale.  I have been planning to get a heavy metal blood test for mercury, but I was figuring that it would probably just return a "normal" reading and shoot down my argument.  But it certainly stands to reason that a person can be in the normal range, yet still have a sensitivity or vulnerability to mercury.  You apparently did.  I'm going to continue to collect negotiating points.  It's funny though--you have to make a case for a doctor to help you when that's what they're supposed to be there for.  And you have to present your case in such a way as to avoid implying that you know more than they do.  Truth is though, I think you Grover's veterans DO know more than most docs because of the rare nature of this disease, and I'm starting to get there too I think. 

Thanks

Chuck 
Title: Re: Grover's disease
Post by: itchyscratchyme on Thursday September 21, 2006, 02:51:14 PM
I have a question about Grover's disease.  I've gotten another opinion and at first the doc said it wasn't Grover's disease and then going back said, maybe it is.  I did have a biopsy which showed signs of it so I'm assuming I probably do have it now.  My question is, when you first get the disease are the symptoms worse?  When I first got it in late April the rash was all over my back and extremely itchy.  Since then it seemed to almost go away but now seems to be coming back somewhat.  I just wanted to know if it would get worse again as before or just kind of stay as a nuisance.

Thanks. 
I
Title: Re: Grover's disease
Post by: mepen on Thursday September 21, 2006, 08:06:46 PM
Itchyscratchyme:  I would ask for another opinion, even if this will be the third opinion. Go to a dermatologist who has some experience with Grover's or has at least seen a case or two of it. Go to a University hospital in the city if you have to. They are sure to have seen a few cases. Ask for another biopsy and have the doc biopsy an active lesion from a different area of the back.

Grover's does have a tendency to wax and wane, flare and then settle down for awhile, but never, in my experience, did it ever go away, then come back. However, everyone is different, so who knows? You said " it seemed to almost go away but now seems to be coming back" I'm not quite sure what that means. I think you need a firm diagnosis, so at least you will know what you are dealing with. I get the feeling you are not certain.

Sundowner:  I was caught in a rotary trying to get Chemet for my Grover's. When my derm refused, I went back to my PCP but this time I prepared. A week or so before my appointment, I dropped an envelope off at his office with a copy of Dantzig's report, along with a cover letter. In this letter, I explained that I had contacted Dantzig directly and asked Dr. Dantzig if he would be wiling to confer with my physician and answer any questions if my doc should have any. Dantzig said yes, absolutely. Dantzig was even kind enough to email me info about dosage of Chemet, blood tests I would need, what to expect, etc. I enclosed all this in the envelope to my PCP along with a print out of Dantzig's website and credentials, so PCP could see Dantzig was real and living and even wiling to help. In the letter, I also told PCP I knew someone who found the therapy to be true: I had been emailing a gal (JD) with Grover's who was using the Chemet, and she was experiencing relief. Anyhow, I gave my PCP a week or so to chew on all of this and when I went in for my visit, he said "Yes" Anyhow, I don't want to speak for Dantzig directly or have him be inundated with Grover's correspondence, but when Dantzig agreed to be available and stood behind his research, I know all this tipped things in my favor. I can tell you truly that so far the Chemet is the best relief I have experienced for this disease and I have had Grover's for over 10 years. I would push for the drug if I were you. If you live near NY, you could also go to Dantzig directly as Joe did. Dantzig takes many insurance plans...hopefully yours. Good luck. Don't give up.
Title: Re: Grover's disease
Post by: Sundowner on Thursday September 21, 2006, 11:31:14 PM
Thanks Mepen.  This is some more excellent advice on how to build a case.  One of the things I was curious about was the right way to go about all this, the timing, what elements of information that would most influence a doctor, etc.  JD has been a great source too.  I'm continuing to learn while I itch :)

Maybe I can share some advice with other sufferers from my limited experience.  Try to stay busy.  My worst times are in the late evening when I'm rather idle and when I'm trying to sleep.  But when I'm working out, when I'm at work, or when I'm doing anything both physically and mentally active, I'm not thinking so much about the itching/stinging.  It's no better of course, but I'm dividing my attention among more things.  It does help.

Chuck
Title: Grover's disease
Post by: Jimbo on Monday September 25, 2006, 07:55:45 PM
It's been some time now since I last posted on this site. Like JD and Mepen I'm trying to chelate and get rid of the mercury in my system as recommended by Dr. Dantzig. This process for me all started last January when I went for a mercury blood test and found mine to be very high at 29.4. I live in Canada and Chemet is not available here. I chose instead Detoxamin which is a milder alternative and is available on the internet. After a month of Detoxamin I went from a reading of 29.4 down to 17.4. After two more months of Detoxamin I went from 17.4 down to 6. After two more months of Detoxamin I went for another mercury blood test. That was on Aug. 16. My reading was still 6. I spoke with a doctor via conference call who is a Detoxamin authority. She feels that it has gone about as far as it will go. While my skin has improved, Dr. Dantzig is quite clear that mercury levels must be reduced to zero. I wrote to the company that makes Chemet and they told me that it is possible to get it in Canada through "Special Access". My derm would have to petition Health Canada. I'm going to see my derm in a couple of days. I'm praying that he is going to co-operate. I'll let you know.

Jimbo
Title: Re: Grover's disease
Post by: mepen on Monday September 25, 2006, 08:25:10 PM
Good luck Jimbo. Since you started out with a mercury of 29.4 (wow) you obviously had a very high mercury burden. I'm impressed how far you've come in such a short while. Kudos to you for getting it down to 6. But yes, you are right. Even a 6 is not healthy. Mercury has no purpose in the body and to get rid of all mercury is certainly the goal, especially for us Grover's folk. But since your level was so high (and for who knows how long) it may take months and months of further chelation for you to eliminate the excess burden that has accumulated in tissues. You've come this far so good for you that you are not giving up. If you have seen improvements in your skin, yes, push for the Chemet and further chelation to see where you end up. Good luck and keep posting with your progress.
Title: Re: Grover's disease
Post by: lightdancer on Tuesday September 26, 2006, 04:21:21 AM
Hi... I am new to the forum, but have to thank all of you who have written about Grover's because although I was definitively diagnosed by biopsy, my dermatologist only treats with steroid creams --which approach was accomplishing less and less, not to mention thinning my skin more and more.  Having read your references to Dantzig's work, I am now in the process of trying to convince my doctor to work with him/his protocol.  I understand the Chemet is usually prescribed for 2 to 6 months and that it is rather expensive ($1000 per bottle/10 days).  Has anyone had difficulty with having this covered by medical insurance?  Also, have any of you changed your diets to try to avoid further mercury toxicity and has that helped?  My bout of this began in February of this year concomitantly with Sjogren's.  I'm wondering if anyone else has had horribly dry sky associated with the Grover's or whether this is just an odd coincidence of auto-immune diseases that I've contracted at the same time.  My ANA was high enough at one point that they also tested at a more sophisticated level of blood work for Lupus, which fortunately was ruled out.  My dermatologist's position is that with now four (MS, vitiligo, Grover's, Sjogren's) auto-immune diseases, my ANA would be high --without implying Lupus.  Thanks for any input... and hope those of you who are chelating are experiencing continuing relief.   
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 26, 2006, 04:10:34 PM
Wow, you have a few challenges facing you.  Ok, first of all, we're all human and all have limitations.  Therefore, if you simply turn your care over to your derm without researching and advocating for yourself, then you are limiting your care according to your derm's limitations and prejudices.  Mepen and I have both posted extensively regarding our challenges obtaining doctor cooperation.  Long-term steroid use is bad for you, bad for your skin.  Can you change derms?  Are you seeing a rheumatologist who might be more helpful?

My insurance has been paying up.  Had they not, I would have gone through the whole appeals process - as I did quite a while ago to obtain treatment with CO2 laser when I was simply having the lesions burned off every few months.  The pills are very expensive, but your estimate sounds high.  Dr. Dantzig's doseage is based upon weight.  I'm 125 and he told me to start w/ 2 pills 3 x per day.  You can figure out roughly where you would be and call your pharmacist and find out what it may cost you.

I have given up seafood as recommended by Dr. Dantzig and as referenced in his research article.  Huge lifestyle change and I really miss it.  About 2 months ago I had a bite of a crab cake with this fabulous sauce.  The flavors and textures exploded in my mouth, and I thought, "this is how we're supposed to eat each morsel" - you know, really appreciate it....but I digress.  I was already eating organic and have a water filter for both drinking and on the showers.  We use nontoxic earth-friendly cleaning products.  Do some research.  You will be amazed at where businesses are allowed to use mercury in their products - I believe I posted previously re some examples.

If I told you that my ANA went from a high of 5,000+ to negative after 4 months of chelating, would you believe me?  It's true.  I can't say for sure that it was because of chelating because my previous ANA test was in 2002.  But the doc said my ANA would always be positive, and what else changed?  Interesting coincidence.  Do some searches regarding the diseases that you are dealing with along with "mercury".  It's been researched, proven, published that Grover's responds to reducing the body's burden of mercury.  That alone should be enough for your doc.  Now check out the other diseases, especially MS.  And remember, ok, so maybe the link is not PROVEN...it also has not been disproven.  Mercury is super toxic and can cause all sorts of damage and has no place in our bodies.  Somewhere back in the earlier pages mepen posted re her email exchange with Dr. Dantzig and the many other diseases that he believes are mercury-related.

By the way, this was the first winter where the skin on my hands didn't crack and bleed due to the cold and dryness.  Related to reducing the body's burden of mercury?  Who knows.  But what else changed after all these years?  Good luck with all.
Title: Re: Grover's disease
Post by: jack G on Wednesday September 27, 2006, 04:33:47 AM
It's about 2 weeks since I replied to Jessica and Mepen.  I said I would stop the Chlorella based on their warnings and watch and wait.  My update is this: My terribly itchy Grover's on my chest has not come back.  I can see where some of the spots were, but for the most part they are mostly non-existent at this point.  I read Dr. Cutler's remarks and of his concerns, but still I have my results. My case of course lasted only 10 days or so, and I realize some of you have suffered many years, so perhaps we're dealing with a different animal. I'm not advising anyone - everyone has to make up their own mind what they will try.  I will mention however that noone seems to have all the answers, and there are in fact at least two other doctors I read about who seem to be in direct opposition to Dr. Cutler's concerns, recommending chlorella for mercury removal. Also somehow it doesn't seem so evident to me that if chlorella is potent enough to pull mercury out of those areas in my chest and stop my itching, it would then drop it in unwanted areas of the body.  There of course are many different circumstances in each case and I don't profess to know why one thing happens in one case but not in another.

With respect to those people posting about dry cracking and too often infected skin, that was my condition 10 years ago until I became aware it was due to a lack of essential oils.  There are several brands out there.  It took me about a year of supplementation to cure that condition, and it's something that should be addressed as quickly as possible I think.  I believe it may be related to other health issues as well.

-Jack
Title: Re: Grover's disease
Post by: playagirl on Thursday September 28, 2006, 09:45:10 PM
Hi jack G I have very dry cracked skin too, what essential oils do you use? I tried aloe but skin is so sensitive it had a bad affect.
Title: Re: Grover's disease
Post by: jack G on Friday September 29, 2006, 03:00:15 AM
Hi playagirl,
No, what I'm suggesting is not for external oil use, but internal oil intake, oils that the body apparently needs and is not getting.  I would guess your diet keeps you away from fats and oils for the most part.  But there are two oils that the body must get, to do it's various functions acording to some books I've read.  Fish oils are recommended but most of us who have grover's shy away from them for fear of introducing mercury.  I do use one and there are more than one - because according to the testing, mercury was found undetectable, and I have not found any adverse effects.  There's apparently a new arctic krill oil also which I have not yet tried but which has been recommended highly.  What I have used quite successfully for many years now is a blend of oils with organic flax seed as the main ingredient.  Some say the fish oil is better because it is a step closer - that is the body doesn't need to process it to get to the fish oil level as it must apparently with flax seed oil, but several studies have found the seed oil effective and I have as well.  There's a book called 'fats that heal, fats that kill' by Erasmus you might want to read.

-Jack G
Title: Re: Grover's disease
Post by: playagirl on Sunday October 01, 2006, 06:51:00 PM
thanks Jack for the info. I've been thinking about the flax seed oil but not sure if there's a problem with taking it with Accutane, didn't think to ask derm. about that. She has taken me off all supplements. I live in Mexico so finding the book seems out of the question.Maybe I can get someone to mule it down to me.
Title: Re: Grover's disease
Post by: Jimbo on Sunday October 01, 2006, 11:34:09 PM
Hi Everyone,
I'm happy to say that my derm has decided to support me in my efforts to obtain Chemet in Canada. He has to make a special request with Health Canada. My skin is doing much better since chelating, but the Grovers is still there. With Chemet I hope to reduce my mercury levels to zero and finally be Grovers free.

Sincerely,

Jimbo
Title: Re: Grover's disease
Post by: Lisaldh on Monday October 02, 2006, 09:25:26 PM
Hi everyone.  I am a 40 year old female and have had Grover's for about 8 years. A derm did two biopsies on two different occasions and they both came back as Grover's.  It seems to come and go, and I now have a bad flare-up that is making me crazy.  I have also been diagnosed with chronic fatigue syndrome after having undergone many tests and ruled out many other diseases.  I know they checked for mercury, but they said it was within a "normal" range.  I am getting my records to find out exactly what the level was.  I have had lots of dental work over the years... bad genes I think.... and most of my fillings have been replaced with crowns, but I have 3 still in that are silver.  I have been reading all of the your comments and am getting a copy of the research by Dr. Dantzig.  (My husband is a physician and is getting it through the hospital library)  I am wondering if I should immediately try to get those fillings taken out, or should I do another blood test, or does it even matter.  Do you remove fillings before chelating?  I'd appreciate any advice anyone may have.  Thanks.
Lisa
Title: Re: Grover's disease
Post by: Jimbo on Monday October 02, 2006, 10:30:41 PM
Hi Lisa,
I'm no expert, but it seems to me that you would want to rid yourself of those fillings since they are a source of mercury. If you've read Dr. Dantzig's findings you know that your mercury level must be reduced to zero. Anything less is unacceptable. So called acceptable mercury levels in Canada are from 0 to 18. That may or may not be fine for someone without Grovers, but it is not acceptable for us.

Good luck,

Jim
Title: Re: Grover's disease
Post by: mepen on Tuesday October 03, 2006, 02:46:44 AM
Lisa,

If you are planning on chelating, get your amalgams out as soon as you can and replace them with composites. Go to a mercury free dentist if you can. There are special precautions a dentist should take during removal to minimize your exposure. You can read about amalgam removal and mercury free dentists online. I don't want to dishearten you, but my dentist told me there are silver amalgams under some of my old crowns. Years back when he put on crowns, he did not remove the amalgam (he does now). He said they should not leak mercury like a filling does, but, nevertheless, the amalgam is there under the crown in my mouth and "could be" a source of mercury leakage. He said if I can't get my mercury levels down after amalgam removal and chelation that I "might" want to think about replacing these old crowns. I have had all fillings taken out and redone with composite material but I don't have the money to remove and replace crowns, so I have to live with whatever mercury may still be in my mouth....at least for now...until I hit the lottery......

I had most of my amalgams out prior to beginning Chemet, but as it was, the last few were removed during treatment with Chemet. During this time, I was having steady blood draws. Interestingly, my blood mercury was at <4 the week I went to dentist to get the last two amalgams out. The week after amalgam removal it went up to <6 which I can only attribute to exposure during the removal process since I was not eating any seafood, etc. It took a few weeks or more to get back to <4. So does removal subject a patient to mercury exposure? Based on my blood draws I would have to say, "yes."

You are lucky your husband is a doctor. That should be most helpful with obtaining and taking the Chemet. Best of luck. Keep posting.

Jimbo,
 
Congratulations and good luck on the Chemet. Keep posting and let us know how you do!
Title: Re: Grover's disease
Post by: playagirl on Tuesday October 17, 2006, 04:25:19 PM
Please help!!! I started taking Accutane about three months ago. My derm started with 10mg and now I'm up to 30mg. The problem is about three weeks ago my skin turned very red and feels like pins sticking in. My derm thought it might be the aloe vera I was using under my lotion, for dryness. Has anybody out there had this to happen? If so what on earth did you do.? As I said before I live in Mexico and cant get many products. Thanks for anyones help.
Title: Re: Grover's disease
Post by: Jimbo on Tuesday October 17, 2006, 10:12:31 PM
I hope you haven't spent too much time on the playa like some of us have made the mistake of doing. Can you not get your doctor to take a biopsy and find out what it is that you have?

Good luck,

Jim
Title: Re: Grover's disease
Post by: knothole on Wednesday October 18, 2006, 01:43:29 AM
playagirl, how do are you taking the pills?  One a day or one every other day etc.?  If it is everyday and you have been on it awhile with the larger mg then this could be a side effect.  The false sunburn feeling and drying out.  If so use a lot of cream and may be have your derm add a few days in between each dose.  It happened to me and I was taking 40mg only on Monday, Wednesday, and Fridays.  Never had a problem other than dry lips.  But when I went to everyday for a month I got what you are describing so I told my derm and we backed it off to Monday, Wednesday, and Friday again.  Hope this helps.  I haven't been on the Accutane now for about 5 months now.  Good luck. ;D
Title: Re: Grover's disease
Post by: JoeM on Wednesday October 18, 2006, 03:51:03 AM
Hello Everyone...I have not posted in awhile as I was on chemet and my skin was doing great. I went to see Dr. Dantzing last July and started on the Chemet immediatly. I was on the Chemet form July 17 trough Oct 8th. MY skin was doing great with my skin flaring a few times during weeks 3 and 5. But overall my skin showed a major improvement.
By October 16, just eight days off the Chemet my skin flared so badly I flet like I was on fire. What a huge disappointed! I was afraid this was going ot happen. I plan to call Dr. Dantzing and see what he says.
I too gave up seafood and had all my amalgams removed.

Has this happened to anyone who was taking Chmet and then stopped. I

Title: Re: Grover's disease
Post by: playagirl on Wednesday October 18, 2006, 08:32:26 AM
Thanks guys for you input. My derm. started me on 20mg every other day for about a month then every day  for another month and then added 10mg every other day. It was after I was on it everyday for about a month that the redness started. I'm 57 and of course I have spent sometime in the sun over my lift but in excess. We moved here about 15 months ago and this problem started about the same time. I think maybe the stress of the trip down may have been the final straw. Since my itches so much I don't spend any time in the sun.My derm is away on vacation so I went to another doc today and he gave me Allegra for red skin, sure hope it helps, soon. So much for living in paradise!
Title: Re: Grover's disease
Post by: Jimbo on Wednesday October 18, 2006, 10:56:57 PM
Sorry to hear about the relaspse Joe. What was your last mercury reading?
Title: Re: Grover's disease
Post by: knothole on Thursday October 19, 2006, 01:39:02 AM
playagirl, I know what you mean.  I am 54 did a lot of surfing in my teens and early 20s.  Sure I got burn but I really don't think I was out there baking.  I have been boating and water skiing for 22 years so I am still in the sun.  I do you 50 sun screen and where a shirt 75% of the time. 

On some pages back some people talked about doing better with a little sun.  I notice I am better in the sun that in the winter time.  I just went to see the derm yesterday and he thought things looked ok except for a spot on my shoulder and mid back. But not to bad.  A little itch but cream and worked most of the day. Back to the water skiing, where we ski it is normally anywhere from 105 to 125 and I had no problems this year.  When I really sweat i am ok but if it is humid and I get clammy then I have more problems. 

I have learned to try to eat more of a cooling type food than hot and spicy ones and it has helped somewhat.  Good luck, again.
Title: Re: Grover's disease
Post by: playagirl on Thursday October 19, 2006, 07:10:10 PM
I went to have blood work this morning and the Mercury test was included, can't wait hear what that is. i still have one regular filling is my mouth and mouth full of crowns. They have to send test to Mexico City so it will take a couple of weeks to get it back. Not sure if I can get the Chemet here anyhow. Went to new doc. wed. and he prescribed Allegra for the red skin, said it was a reaction to the Accutane. Feels a little better today.
Title: Re: Grover's disease
Post by: Jimbo on Friday October 20, 2006, 12:27:31 AM
My derm just called me today with the results of my latest blood test. I'm down to 3.6. That's a long way from 29.4 where it was last January. Skin is doing much better. All that was done with Detoxamin not Chemet which is unavailable in Canada. My derm is trying to get a hold of Chemet for me to finish things off.

Jim
Title: Re: Grover's disease
Post by: coloradogirl on Friday October 20, 2006, 02:25:06 AM
I originally posted this message in the "Let me introduce myself" area, but since I've had such amazing results with the dietary changes, not only in skin improvement, but in other health areas as well, I wanted to repost this information in this area, in case it may be of some benefit to others.

Oct. 4, 2006
"A year or so ago I started getting a rash that would blister.  Wasn't really bad most of the time, so I just put some anti-itch cream on it, when it was particularly troublesome.  Most the time it just lasted a couple weeks and then the site (mainly lower abdomen) would heal for while, and then I'd get another flare up.  Was visiting my dermatologist for annual checkup and asked her to look at the area, which happened to be flaring up at the time of the visit--by this time it was starting to spread to a few areas on my legs.  She said she thought it was Grover's (WHAT? I asked -- smile) and she went ahead and biopsied it.  Results came back positive for Grover's.  So while searching the Internet for information I found this site and started reading posts on the topic.  One I read mentioned that their outbreaks seemed to be tied to food allergies, and since I had also read (on another site) that rheumatoid arthritis (which runs in my family) could have a food allergy component I decided to get tested.  I found a doctor who was knowledgeable about food allergies and made an appointment to get the full 400+ item food allergy test (ELISA ACT).  Upon taking my medical history and family history (which includes other autoimmune disorders as well as osteoporosis) the doctor asked if I'd ever been tested for Gluten Intolerance.  Didn't know what gluten was, so the answer was of course no.  He said that he'd like to test for that first, as he thought that might be my issue.  Sent tests off (both genetic test and specimen test), and just for the heck of it I decided to go on a gluten free diet...just to see what would happen.  Had flu like symptoms for a week (I was surprised my body reacted to intensely to the diet change), and then I started seeing improvement in areas that I didn't even expect.  I wasn't cold all the time anymore.  Less fatigue/needed fewer hours of sleep per night.  No more headaches (before the diet I'd get a mild one about 3-4 days per week...mainly in morning).  Skin rash cleared up, and after one more flare about 1 month after starting diet, I haven't had another blister/rash pop up again.  I now wonder if maybe my biopsy was misdiagnosed and what I really had was Dermatitis Herpetiformis (a skin disorder related to gluten intolerance)--as my genetic test did show that I have Gluten Intolerance.  Anyway, given my diagnosis (via the dermatologist) coupled with my good results on the gluten free diet, I wanted to share my story with others in case someone else out there (having also been misdiagnosed) may be able to benefit."

P.S.  The results are ongoing...I have still not had another outbreak.
Title: Re: Grover's disease
Post by: jd1 on Friday October 20, 2006, 02:46:19 AM
Congratulations on your success!  What do you have to give up to be on gluten free diet?
Title: Re: Grover's disease
Post by: mepen on Monday October 23, 2006, 12:59:35 AM
Joe,

No I have not had any bad flares since Chemet but I have not officially discontinued. I'm two weeks on, two weeks off Chemet for at least another three to four months. How discouraging for you to be doing well and then get the awful flare when you have finished treatment.. Please keep posting and let us know what Dantzig says. Sounds like you may have more chelating to do, unless there is some other factor going on..

Playagirl,

You wrote on Accutane "My derm. started me on 20mg every other day for about a month then every day  for another month and then added 10mg every other day. It was after I was on it everyday for about a month that the redness started." Here is my experience with Accutane:  Accutane is very harsh on the skin and extremely drying and the higher the dose, the higher the side effects. I would say the increase dose is causing the skin redness, especially since the two correlate. If you insist on taking Accutane, take the lowest possible dose that works. When I was on Accutane, I found out that 10mg just three times a week could help keep flares down. Accutane tends to keep working for a long, long time in the system, even when it is discontinued, which is why acne patients who have discontinued Accutane are told never to get dermabrasion until they have been off Accutane for 6 months to a year (and also why their skin continues to clear and show improvement when they have discontinued). Since Accutane has this cumulative, long-term effect that keeps going, you may be surprised to find just 10mg three times a week is quite helpful. However, please push to pursue the chelation avenue and get off the Accutane all together. I have tried both and I am experiencing much better relief with the Chemet (chelation) than I did with Accutane, plus a host of other problems I had like insomnia, depression, anxiety,migraines, and numbness and tingling in the fingers is much, much better. . Good luck and let us knowhow you do.



Title: Re: Grover's disease
Post by: playagirl on Wednesday October 25, 2006, 04:31:55 AM
mepen, Thanks so much for the info. I am working on the chelation, waiting on the results of my bloodwork and will go forward from that. Still don't know if Chemet is available here or not. I have cut the accutane down to 10mg a day for a few days and am feeling a little better, next step I'll cut to everyother day. Have you had any side affects with the chelation? and how long have you been on it?
Title: Re: Grover's disease
Post by: mepen on Wednesday October 25, 2006, 02:36:03 PM
Playagirl,

I have been on Chemet since the middle of June. My schedule consists of 2 weeks on the drug, 2 weeks off. Main side effect is that urine has a sulfur smell. Other side effect noted is that I feel slightly irritable and tired the first 2 days when beginning the drug but this experience has decreased each round of Chemet. Other than that, no side effects, however, you need to be under a docs care and get blood work done during course of the drug, because there are some blood counts that the drug can negatively affect in certain individuals. It is a far safer drug than the Accutane. (Chemet is used in children for lead chelation - it is that safe)

You should have access to all the past posts within this skincell/Grover's website. I think if you read through them, you will find answers to many of the questions you have.

Jack G

Read through some past posts. If I sounded harsh to your posts I apologize. I just wanted to get point across that even with natural chelators people should have a doc's care or doc's advice (holistic doc or otherwise) so they don't do more harm than good. Anyhow....How are you doing with your Grover's and what is your current treatment?
Title: Re: Grover's disease
Post by: playagirl on Tuesday October 31, 2006, 09:52:06 AM
I finally found the Dantzig article, does anybody know if you learn anymore from reading the whole thing? I picked up my mercury test yesterday and it is 12, don't really know what that means.
Title: Re: Grover's disease
Post by: jd1 on Tuesday October 31, 2006, 05:02:30 PM
Playagirl, have you read the posts beginning with page 13?  There is so much information available to you.  Yes, please read Dr. Dantzig's whole article.  Blood hg level of 12 is high - it is even over the "accepted" level of 10.  Mepen and I have been struggling with this disease for years and started out lower than "accepted" levels.  I believe Joe was the same.  There is very effective treatment available, as detailed and discussed in previous posts. 
Title: Re: Grover's disease
Post by: playagirl on Wednesday November 01, 2006, 03:40:26 AM
Thanks jd1, I have read the whole thread, of course it all didn't sink in. I think I have the wh
Title: Re: Grover's disease
Post by: playagirl on Wednesday November 01, 2006, 03:46:13 AM
whole article and I'm collection all the info I can to take to the doc. Are you still using a derm. or someother doc? Sorry, don't know what I did with original post.
Title: Re: Grover's disease
Post by: playagirl on Wednesday November 01, 2006, 02:27:41 PM
jd1, I read somewhere back that you email Dr. Dantzig, could you please PM  me the email address, I haven't been able to find it. Thanks
Title: Re: Grover's disease
Post by: jd1 on Wednesday November 01, 2006, 06:49:06 PM
The email is at the bottom of his article.  To answer your question re who has helped me:  I started with my derm, it took a couple of appointments to convince her.  My skin cleared, but I wanted to continue for a while longer.  She did not want to.  At that point I approached an alternative MD.  He does a lot of this stuff.
Title: Re: Grover's disease
Post by: lightdancer on Friday November 03, 2006, 05:46:03 PM
Having trouble posting lately, so if this appears twice, my apologies.  While awaiting my doctors' decisions on whether they will work with Dantzig's protocol (one already declined, still waiting for the other), I altered my diet to delete fish for a while.  I also experimented with deleting the glucosamine I had been taking for 5 to 6 months prior to the initial outbreak of the Grover's and am wondering whether anyone else has ever been told to delete the latter as it is made from shellfish, predominantly (at least from my research) from China since it is less expensive for the companies to purchase there and where the mercury levels are supposedly very high and unregulated.  As I had also been taking Vitamin A (made from fish oil), I stopped that and am about to switch to straight Beta Carotene, after searching to no avail for a brand of A not made from fish oil.  The outbreaks began to calm down until the last week when I worked with some new fabrics, probably sized with the usual formaldehyde-related preservative, which has bothered me for years and which now seems to have set off the Grover's again.  Anyone have any issues with having to wash new clothes and fabrics to rid them of the sizing/preservatives?  I have the same problem with decaffeinated coffees and teas that aren't Swiss Water processed as they are decaffeinated with a formaldehyde-related chemical.  Again, just from what I've researched, many of us who are mercury sensitive are also sensitive to formaldehyde and its chemical relatives.  Not sure why, but it's certainly true for me.     
Title: Re: Grover's disease
Post by: jd1 on Saturday November 04, 2006, 04:02:08 PM
Hi lightdancer,  What research lead you to connect mercury sensitivity with formaldehyde and its chemical relatives?  What are the chemical relatives of formaldehyde?  Thank you for any information.

Source Naturals makes a vegetarian glucosamine, which I changed to when I learned about Grover's and the mercury connection.  I've been using it for almost a year and it works well for me. It's one of many lifestyle changes I have made.

Good luck with your docs.  It's amazing how hard we have to work to get appropriate help....
Title: Re: Grover's disease
Post by: lightdancer on Sunday November 05, 2006, 06:41:56 AM
Hi JD...
 Formaldehyde is also known as formalin, methanal, methyl aldehyde, methylene oxide and oxymethylene.  There are also products which contain certain preservatives which release formaldehyde, quaternium-15, among others.  I'm not a chemist, so that's just a beginning.  Most importantly for those of us who react to it is to find out what it's in, which includes but is not limited to decaffeinated drinks that are not "Swiss Water Processed," permanent press clothing/fabrics, anti-cling, anti-static, anti-wrinkle sizings, waterproof and moth resistant/proof finishes, suede, chamois, certain cosmetics like fingernail polishes, some household cleansers, pressed wood, certain o/c meds, cigarette smoke, et. al. 
As for the connection between mercury toxicity and formaldehyde sensitivity, the exact article escapes me.  I will try to locate it for you, however, the point of the article was to imply that once one is mercury sensitive, the system has difficulty in detoxifying itself from other toxins.  Thus, many of us tend to become, over time, multiply chemically sensitive, not necessarily because we are being exposed more to environmental toxins than others, but rather simply because what we breathe, eat, or otherwise absorb, we no longer have the ability to release due to the damage from the mercury.  I hope this helps.  I'm sorry about not recalling the original article.  I realize you would want to read it for yourself.
And yes, the amount of work many of us have to do to prove to our physicians (a) that we are ill and (b) that the outside the box treatment is viable --is draining.  At the end of the day, I frequently feel as if I've been on trial. The up side of that is that I think we are all becoming very knowledgable about this disease which has to stand us in good stead.  It's just that each of us has pieces of the puzzle.  Sometimes I wonder if we all wrote phenomenological descriptions of our experience with this disease and plumbed them for a collective portrait of Grover's whether it wouldn't help the cause of the research.
Thanks for the information on your experience with the vegetarian glucosamine as I have just recently begun taking it.  Haven't begun the BetaCarotene yet, but plan to do so as it only makes sense to repair the skin as much as possible since Dantzig's position seems to be that the mercury toxicity only results in Grover's if the skin cells have been compromised/damaged in some way, as by sun, age, or in my case, Sjogren's.  You mentioned life style changes.  Any in particular that you have found particularly helpful besides, I presume, deleting fish and fish products?
   
 
Title: Re: Grover's disease
Post by: jd1 on Sunday November 05, 2006, 06:32:19 PM
Hi Lightdancer, thanks for the information.  I am interested because your summary of the article makes sense with my experience of being hypersensitive to everything.  I will spare you the many examples.  At this point they are all humorous or irritating, depending on my mood, not life threatening or severely life altering.  Your description of formaldehyde as one more pollutant that is everywhere is not surprising considering the state of our world.  I am only recently able to wear clothing other than the softest cotton or silk for a whole day.  I used to put on a t shirt for going out into the world.  Upon return home, I would change into another t shirt that irritated the skin less.  I have about a dozen of that style.  At one point I branched out and purchased a couple of black ones, instead of white, but my skin couldn't handle the dye or something.
Please do let me know if you find the article.  Did it mention anything to do to counter the increasing hypersensitivity?  If mercury is removed through chelation, will the body heal and become better able to detoxify itself?  Cutler gives a description of how heavy metals cause "multiple chemical sensitivities" on page 28 of his book, but I can't find anywhere that he says that removing the mercury will cure that reaction.
Lifestyle changes.  Some have developed over the 10 years of having the disease to reduce the severity of the flare.  Others since learning about the mercury connection and the gross extent of mercury pollution.  Here goes:  yes, have stopped fish.  Huge lifestyle change.  Put a water filter on the shower several years ago.  Helps a lot.  Have a water filter in the kitchen.  I used to smell the chlorine, although no one else could.  Like I said, hypersensitive.  We've been eating organic as much as possible for a long time for general health and Earth issues.  Mepen flares if she drinks regular milk but is ok with organic milk.  Moved to Earth friendly nontoxic cleaning products upon reading that mercury is allowed to be used and not listed as an ingredient.  Usually use Earth friendly nontoxic laundry detergent.  Checked all makeup, body care, hair care products for unlisted irritating ingredients and pollutants and changed where I couldn't obtain the information.  Buy most of my stuff from Whole Foods, so I figure the stuff I'm purchasing has already been investigated at least once.  I changed vitamins to the brands that are organic and/or from complete foods.  The one thing I really don't know much about, the haircolor my stylist uses, is applied with the foils so that it is not soaking directly into my scalp.  She says she's checked the stuff out and it's ok, but one person's definition of ok may not be the same as mine.  Use "nontoxic" nailpolish when I bother.  No formaldehyde or toulene.  I get almost no sun.  I wear Solumbra over my clothes.  Full spectrum SPF 30000 or something like that.  I consider sunscreen pretty much not good enough for the Grover's areas since its SPF factor does not apply to the UVAs.  The truth is that it's kind of a drag when I'm somewhere where it's hot, ie at Disneyland, and I'm all covered up.  When we do a family sun vacation, ie Hawaii, I wear a full body suit.  Check out the one with the purple stripe down the side at stingray.com.au.  That's what I wear.  Plus gloves, mangrove SPF 50.  Plus a hat and sunglasses.  People look at me like I'm nuts, but I know that they are the ones who are really nuts, baking themselves like that.  I'm laughing as I write this.  I can't think of anything else.  Is that enough?
Re the beta carotene:  I think Dr. Dantzig told me that a multivitamin might help the skin.  My first derm told me that beta carotene wouldn't do much because it was water soluble.  She said I had to get a heavy load of vitamin A to impact the skin. I think that was my first treatment, per her advice, and I stopped because my hair started falling out and I read a bit about liver toxicity and too much vit A.
Thank you for all of the information.  I trust you will ultimately get the Rx.  You sound like you are not going to quit and clearly are educating yourself.  I see the upside as the opportunity to educate ourselves and the health care providers so that others don't have to deal with this disease for years on end.
Title: Re: Grover's disease
Post by: lightdancer on Wednesday November 08, 2006, 01:00:00 AM
Thanks JD.  Our experiences on the multiple chemical sensitivity and clothing/sun issues are similar.  I am unable to tell what flares me many times, which is frustrating of course.  I am currently waiting for my doctor to actually talk with Dr. Dantzig and see if we can begin his protocol.  My mercury results just came back and they were very low, which of course doesn't help convince my doc to conceive of the mercury connection.  In answer to your question, yes, the implication from what I've read is that if you get rid of the mercury, the body can better handle everyday toxins because it's not compromised with the mercury toxicity.  Take care.   
Title: Re: Grover's disease
Post by: playagirl on Sunday November 12, 2006, 03:01:11 PM
Thought I would update on my progress getting Chemet. I went back to my derm fri. and took Dr Dantzig's report and my bloodwork. She is sending me to another doc. on tues and that doc will get intouch with Dr Dantzig about his protocol and how to get the Chemet.  Is there anyone that has completed the treatment of Chemet? How long where you own it and did the Grovers come back? I'm still on the Accutane, small dose, and it continues to drive me crazy.
Title: Re: Grover's disease
Post by: Phish on Tuesday November 14, 2006, 07:38:19 PM
Hey guys & gals, I have been dealing with Grovers for over a year. I have also been dealing with multiple cancers for 26 years, and during that time have done a lot of research and experimenting. Yes, I am one of those human guinea pigs, but it has also keep me alive all these years, plus we have actually achieved some treatments and possible cures for certain types of cancer. I have extreme skin cancer, with typically 120 to 400 growths a year removed via surgery, laser, and nitrogen, plus heavy chemicals. So you see we have a lot to experiment with. The Grovers is the worst and have tried several types of chemicals. Right now we are messing with one designed for nerve pain originally (plus it has anti-depressant capabilities which might help with the attitude side). Next week I am going to Arizona to experiment with some new doctors ideas, so will let you all know of anything positive. In the mean time, I have found some relief from all the itching, without all the other side effects most chemicals have, by using an over the counter product called SARNA, which is an anti-itch lotion developed for sunburn, poison ivy & oak, etc. It is steroid-free and is mostly just camphor and menthol. I think the menthol creates a slight burn sensation, which cancels out some of the zinging itches for a while. Good Luck To All.
Title: Grover's Disease
Post by: Sundowner on Wednesday November 15, 2006, 01:00:54 AM
Hi All,

I began treatment with Chemet today.  I am a 60 y/o male, 6'3', 205 lbs.  I have been diagnosed (biopsy confirmed) with Grover's.  It is pretty extensive on my upper torso, arms, and legs.  So if Chemet and the associated preventative measures help me, they should help most folks.  I'll keep you posted.

I want to share some info I received from Dr. Dantzig (Dr. Paul I.Dantzig, Columbia University School of Medicine, Dermatology Department), which he has kindly agreed to let me post on the forum.   As part of building my case to present to my dermatologist, I thought it would be wise to test my mercury level.  The result came back œNone Detected, which puzzled me of course.  So I wrote to Dr. Dantzig for his advice on how to proceed next.  He recommended I have it retested, but sent to Quest Diagnostics this time, because of the way they measure.  It came back at <5, which is low, but at least something.  What I want to share is the explanation he gave me of how and why mercury does its dirty deeds and how they treat it.  I found this to be an interesting and helpful explanation, which might be useful to you as you discuss this with your doctors:

From Dr. Dantzig on 10/2/2006:  Our studies have shown that Grover's is due to mercury.  It is caused by the epidermal cells' inability to produce intracellular adhesion protein because mercury enters the mitochondria of the cells and robs them of the energy necessary to produce this protein.  This results in the small erythmatous papules, which often become scaly or crusted, on the abdomen, chest, back, arms, and legs.  The disease favors damaged skin (as shown by our electron microscopic studies), especially through sun damage or through aging, and may be asymptomatic or very pruritic.  It is often aggravated by sweating.  We have a series of about 50 patients with Grover's, all of whom have measurable blood mercury levels and all of whom responded nicely to therapy.  Treatment involves eliminating all sources of mercury, especially seafood (ALL), smoking, dental fillings, etc.  We also treat our patients with Chemet, 300mg TID, which is very effective.  Patients often see a response within 1-2 weeks, but treatment is often necessary for 2-4 months.  The treatment is very safe, but we monitor blood mercury, CBC, and chemistry profile every 2 weeks.  The only problem we have had with the medicine is urticaria (allergic reaction) in 3 patients, which necessitated stopping the medicine. 

He went on to tell me that they have had people break out with Grover's who had mercury levels of only 1 microgram/liter.  He said that that doesn't sound like much mercury, but it still represents billions of molecules.  Even at my low mercury level, he still recommended Chemet for at least a trial of 2-4 weeks at 300mg TID because it's safe.  I will be interested to see how this goes, as well as what the long-term battle with this disease holds for me.  It looks like I am a prime candidate for Grover's”aging skin that has been sun damaged, coupled with an apparent high sensitivity to mercury, as evidenced by low blood mercury levels when tested.

Chuck 
Title: Re: Grover's disease
Post by: jd1 on Friday November 17, 2006, 09:21:50 PM
Congratulations Chuck.  By now you have been on for a couple of days, and I hope you are adjusting easily to the drug.

I am totally disgusted.  I did what is called a DMSA Challenge on the recommendation of my doc.  I have shared that I continued chelating past the relief from Grover's for the sake of getting the toxin, mercury, out of the deeper tissues and organs.  And after a while I added ALA per ARI & Cutler's protocol.  I decided to stop in Sept - sick of taking all of these pills.  I would do the challenge and continue next summer if necessary.

I just received lab results.  Mercury is about 1/2 way "within reference range".  (Wow, if I am that high now, where did I start??).  But get this - LEAD is elevated.  Not that this impacts Grover's or anything, please excuse my digression, but where the heck am I getting lead from, and if it's elevated after almost a year of cycling on Chemet, which is FDA approved for lead chelation, then how high was that toxic metal before I started this process?  And the concern w/ ALA is that it crosses blood/brain barrier and theoretically can move metals into CNS, and considering these lab results, I probably added that to the mix way too soon.  I don't understand "reference range" - if that means something like the arbitrary 10 that the labs say is acceptable for mercury in blood (even though many of us have Grover's even with much lower levels)  or if it is a lower, less toxic level.  I have to wait for the doc to explain it to me.

Meantime, my skins is still really good, but not perfect, been itchy for a few days, so with all that I am back on the pills starting tonight in 2 week cycles.  So much for resting until next summer.
Title: Re: Grover's disease
Post by: Rusti on Friday November 24, 2006, 02:47:59 PM
I just want to jump in as I am a newbie here. I wish I didn't have to find this site, but I am glad it is here. I find it very interesting to read all of the treatments that are being used and I will be testing my dr to see how much he really knows about this!

I am a 44 yo female who was diagnosed (through a biopsy) last week with Grovers. I have breakouts over most of my back, some on my stomach and a little on one shin. It is driving me crazy. I have found that staying cool is the biggest and best thing I can do (I live in south Florida) to relieve the itching. While at home, I seem to walk around with ice packs to place on the areas that are the most inflamed. I am on an assortment of meds at the moment, had some cortisone shots, but I seem to be breaking out more and not getting any better. Since this is 'brand new', I have no idea what to expect and nothing to compare it too.

I will be requesting a full blood work up when I see my dr next. I am curious to find out if the meds I am currently on could possibly have anything to do with this (not the meds I have been prescibed for treatment). I began taking 75 mg of zoloft in June for mild depression (my late daughter's birthday was approaching :'() and also I take 50 mg of Topomax for migraine prevention as well as relpax for migraines as needed. I know that topomax is a rough drug (can be especially hard on the kidneys) and it was very hard on me for the first few months I was on it. I don't know if there is any connection at all. But I want everything checked out. I don't know how I will go through the hot summer months here in Florida like this.

Any advice will be appreciated. I hate the constant scratching and I hate feeling I have no control over this as well.
Title: Re: Grover's disease
Post by: jd1 on Sunday November 26, 2006, 06:51:08 PM
Hi Rusti,  Very sorry for the loss of your daughter.  I'm sure the words alone can't even touch it.  I don't have experience with those specific drugs but know someone who might and will call your post to her attention.  Obviously I am partial to the mercury toxicity connection.  Please let us know what you try and how you do.  Jessica
Title: Re: Grover's disease
Post by: mepen on Monday November 27, 2006, 12:27:17 AM
Rusti,

For almost ten years, I was on a low-dose of Zoloft and doxepin for migraines, anxiety, and depression. I guess I was on the Zoloft about a year or two when I noticed a persistent rash, however, it was not until a year later I sought treatment because the rash was not going away. After seeking treatment, add another two years until I was properly diagnosed with Grover's. So I had been on these meds 5 years or more when I asked the derms at a top-notch hospital in Boston if the Grover's could be a side effect to the medications. They said, "No," and then actually encouraged me to stay on the meds saying that "going off Zoloft could relapse depression" and that "the doxepin was beneficial for the itch." So I stayed on the meds for more years.

Well, to make a long story short, after a number of rounds on the Chemet (the chelation drug for mercury), I began to feel well enough (and courageous enough) to try weaning off the meds. I was a bit frightened because I had tried to get off the meds a number of times in the past and was unsuccessful because the migraines had returned with a vengeance along with an anxious, yucky depressed feeling.  Anyhow, I have successfully been off the Zoloft for 5 months and I feel good. More energy. More focus. No depression. I take 50mg Petadolex (pure-grade Butterbur) every evening for migraine prevention and I will take 10mg of doxepin along with two aspirin if I feel a migraine coming on (which may happen rarely now, once a month).  The Grover's has quit flaring and is clearing since chelating with Chemet. I am still chelating because my mercury level is <4 and my goal is to get to zero. I think lowering the mercury burden positively affected brain/chemistry, hence helped relieve migraines, anxiety, depression and that is why I was able to successfully discontinue the meds this time. Whether the meds had something to do with the Grover's in the first place, I don't know. The docs said no, but I can't help but wonder if the Zoloft somehow affected the whole Grover's process. I suppose I will never know.

I know you are under severe emotional grief and I would not encourage you to discontinue or switch anti-depressants without consulting a doc. There is no medical evidence that Zoloft affects or causes Grover's, however, I was on Zoloft when my Grover's first appeared and on the medication during the years Grover's was at it's worst, so it does make me wonder....

I do encourage you to get a mercury test and read through Dantzig's research. It seems to be the best hope for Grover's...so far...
Good luck and keep posting and let us know how you do.


Title: Re: Grover's disease
Post by: Rusti on Thursday December 07, 2006, 01:52:11 AM
Thanks for the info. My derm wants me off the zoloft and the topamax. My dr wants to keep me on both. The thought of being off of them, especially at holiday time does seem a bit rough... So for now, I will stay on them. They are wondering if there is some sensitivity to sunlight being caused by the topamax. I think I would rather itch than have the migraines come back though. I can't help but think that some of this is stress related.

I've been put on prednisone. Anyone been on that? I have filled the rx, but not taken it. I am not sure I want the side affects. I'd like to hear if anyone else has used it.

I spoke to my derm about the mercury. He didn't know what I was talking about. I also spoke with my regular dr and he said my ins would likely not cover it and it would be very expensive. Should I expect this type of reaction?

I've started on a couple of new topical meds and I am seeing a difference, slow, but better.

Again, thank you for the welcome.
Title: Re: Grover's disease
Post by: jd1 on Thursday December 07, 2006, 04:58:14 PM
Rusti,  Have you read the past posts?  If so, you will find that we all have encountered a ton of resistance from our docs.  Did you show the derm the research article (and ask why he wasn't aware of it?)  Mepen's health insurance is brutal, and so far her Rx for Chemet has been covered.  My insurance balked at paying for a treatment that I discussed much earlier in the forum, and I went through the appeals process and ultimately won.  A lot will depend on how hard you are willing to work to present your case, the information, the research, etc.  If they say NO and you stop, then they win, and Chemet is very expensive.  If you keep pushing and educating those around you, eventually you will get somewhere.  And help the next Grover's sufferrer who has to deal with that doc.  The bottom line is that this treatment has been tested, published.  I think the establishment's argument is that Chemet is not FDA approved to treat Grover's.  But then, neither is prednisone.  Or Accutane.  Or Dovonex.  Or Retin-A.  Or a lot of other stuff that we've tried at the suggestion of our docs.  And as far as I have read and per discussion with others outside of this forum, for those of us with this very persistent form of disease, there is nothing else that works as well.

My Mom took prednisone for six months for sarcoid.  The side effects were intense and numerous.  The one I dealt with the most was the permanent aggitation.  My brother and I joked that Mom was on speed.  Joke aside, the prednisone isn't going to cure the Grover's, and it's way too toxic to be on forever, and some people have serious side effects even in the short-term.  That said, if you decide to try it, please post back and let us know how you do.
Title: Re: Grover's disease
Post by: playagirl on Friday December 15, 2006, 10:18:58 AM
Sundowner, You have been on the Chemet for about a month now, how are you doing? I'm trying to find a way to get it, but it's not available in Mexico.Plan to contact Dr. Dantzig and see if he can help. I stopped the Accutane about ten days ago and have had a break out but feel much better, finally have my head back on straight. That stuff is bad news.
Title: Re: Grover's disease
Post by: Sundowner on Tuesday December 19, 2006, 07:41:23 PM
Hi Playagirl.  I have been on Chemet for 5 weeks now.  Haven't reported because not much to report.  I am seeing slight improvement on my legs, and recently slight improvement in appearance on my upper body.  But the upper body symptoms are as bad as ever.  I'm hoping I simply just have a stubborn case because I should have seen more improvement by now.  Hanging in there.

Never took Acutane.  But I have been on heavy doses of Prednisone twice and Taclonex once.  All three did the same thing.  They knocked the rash and symptoms back a little while on the stuff, but as soon as I was off it, the rash and symptoms came back with a vengeance and became worse than ever.  I'm convinced steroids are not the answer.

My symptoms by the way are: (1) Rash, (2) Intense itching, (3) A stinging/burning sensation at times, and (4) Body chills at times, especially during flare-ups.  The flare-ups can be triggered by the least little thing (sweat, stress, etc).  Anyway, there is some speculation that I might have something other than Grover's, based on these symptoms and my slow response to Chemet.  We shall see :)

Chuck 
Title: Re: Grover's disease
Post by: Jimbo on Wednesday December 20, 2006, 02:58:38 AM
Playagirl,
I tried unsuccessfully to get Chemet in Canada. It's not available here either. There are other options. I was able to buy DMSA in Canada with a doctor's prescription. Chemet is DMSA. You might search around to see if you can find it in Mexico. Some compounding pharmacies carry it in Canada. Another chelator is EDTA. A popular EDTA chelator is Detoxamin and is available over the internet. It's not cheap, around $250 US a month, but it works albeit more slowly than DMSA. I took it for 8 months and my mercury blood count went down from 29.4 to 3.6. I just started taking DMSA yesterday.

Good luck,

Jim
Title: Re: Grover's disease
Post by: playagirl on Wednesday December 20, 2006, 10:48:03 AM
Sundowner and Jimbo Thanks so much for your reply. I'm very happy to tell you I will be getting Chemet on our trip to Atlanta this weekend. Because I'm under a doc care here Dr. Dantzig was kind enough to call in the prescription for me. Unforturately I have to pay for by drugs and it's really expensive but at this point I would do almost anything. Ofcourse I'm a little discouraged with your progress Chuck, hope that changes soon. Well keep you posted on my progress.
Title: Re: Grover's disease
Post by: JoeM on Friday December 22, 2006, 08:44:58 PM
Hello Everyone,

I have not posted in awhile and wanted to check in and see how everyone else in doing on the Chemet. I have to tell you that I am totally baffled by this disease. I have been on Chemet for a total of six months now. My skin showed great improvement beggining month 2 and stayed pretty clear until month 4 when I figured I would go off since my skin was doing so well. Within 2 weeks I flared terribly, so I went back on the chemet mid-October. I have been on it agian for nearly 2.5 months and there has been no improvement in my skin. I continue to flare and get this...my mercury levels are the same at a 4 which was the same level it was before I started the chemet six months ago. This is what my labs are saying...I am not sure how accurate they are. I know that the great results I had in months 2 through 4 was because of the chemet. I have no doubts about it. What I do not understand is why I am not getting the same results now. And why are my mercury levels not dropping? I do not eat any seafood and I do not have any amalgams.

Anyone wanting to share thier results with chemet?

Happy Holidays
Joe



Title: Re: Grover's disease
Post by: Jimbo on Sunday December 24, 2006, 04:41:54 PM
Hi JoeM,
That's discouraging, but looking at it another way, your experience doesn't necessarily disprove Dr. Dantzig's claims. In other words it seems that the problem is not getting rid of the Grovers as much as getting your mercury level down to zero. I probably know less about this chelation process than most here, but perhaps your body is pulling mercury out of more deeply rooted areas where it has been stored and thus pushing your mercury readings up. Someone needs to talk to Dr. Dantzig about this perhaps Mpen since I think she is seeing him personally. His results do not appear to be consistent with what people are finding here unfortunately.

Jim
Title: Re: Grover's disease
Post by: mepen on Thursday December 28, 2006, 01:50:19 PM
Hi,
No, I'm not seeing Dantzig personally. I was able to get Chemet from my PCP with Dantzig as a contact backup for advice. I have not contacted Dantzig in a long time but plan to do so when results of my last Hg (mercury test) are in my hand. I have been on Chemet over 6 months, 2 weeks on/2 weeks off. I was doing well with only one moderate flareup during the summer and my skin looked quite good in early fall. Went to VT for Thanksgiving and two to three days later, I experienced a major flare with new lesions over a new area (mid and lower back). Itchy, pinching, burning of old lesions too. Very distressing to say the least. I am still having trouble getting it under control. The Chemet is not helping anymore. Like Joe, I'm dumbfounded. I will post again when I have more report.
Title: Re: Grover's disease
Post by: jd1 on Thursday December 28, 2006, 03:29:57 PM
Hi everyone,

I am so sorry that everyone isn't experiencing fabulous relief.  I want you all to know that my skin is doing really well.  My Mom looked at my back a couple of weeks ago and said it was as clear as she had ever seen it.  She said there was one lesion.  I am telling you this to offer hope.  I don't think my disease has been better or worse than anyone else's.  But I have been chelating the longest.  It doesn't make sense that I would be the only one to experience lasting relief.  It's been almost a year since we started discussing this treatment.  Maybe this is the challenge of the season with the dry heat of central air.  Maybe Chemet has been binding to other metals and will return to Hg after the body's burden of other toxic metals are reduced.  Maybe those of us who have had this disease so long have more Hg deeper in our tissues and are poisoning ourselves from within and have to expect to chelate much longer than those who are new to Grover's.  Andy Cutler talks about chelating for 6 - 24 months after cessation of symptoms because of that.  I just want to throw the ideas out as possible explanations and again, I want to offer hope.  This has not been a temporary, moderate improvement in my skin.  It has been awesome.  Jessica
Title: Re: Grover's disease
Post by: gsperez on Thursday December 28, 2006, 04:37:27 PM
Hi All,
I have not posted since I first joined this thread, but have been keeping up on the postings. I am getting ready to go to my Doc with the info on Mercury and hope to go on a program like Chemet to get some relief. I wanted to comment on Mepen's experience flaring up after going to VT. In addition to the Grovers, I was diagnosed with Asthma in the last year and interestingly was told that both diseases as well as Eczema (which I also suffer from) and some other allergic reactions are deemed to be related. They are all atopic and I was told that some susceptible people can get one or all. I bring this up because I find that though I never seem to get relief from the crusty bumps of grovers, I do have long periods where they are not raw and rashy. However, I have been in NYC this week for Christmas and no sooner did I get to my mother in-laws, where I was exposed to cats and cigarette smoke than my Grovers started a major flareup. I am curious if this could be a part of your experience as well? I also get stress related outbreaks. Has anyone else had that experience? I have no doubt after reading all the other postings that having mercury toxicity could leave one open to many types of problems like those I've mentioned here.Thanks - Georgia
Title: Re: Grover's disease
Post by: Sundowner on Thursday January 11, 2007, 06:43:48 PM
Hello All,

Just a Chemet update here.  I have been on it (900 mg per day) for 8 weeks now.  My response has been slow, but I have finally started to see some improvement.  At about the 7-week point, my skin began to look better and feel better to the touch.  The red bumps (papules as Dr. Dantzig calls them) have begun to smooth out in all areas except parts of my back (my worst area).  However, the itching has remained.  And I still flare for the usual reasons.  During flare-ups, the papules no longer rise up as they used to, but I still get my other symptoms (intense itching, pinpoint stinging sensations, and occasional body chills).  My bi-weekly CBC tests and chemistry profiles remain normal.  Although I am much slower to respond than his other patients, Dr. Dantzig is keeping me on the Chemet and thinks it'll just take more time.  I am making this update for the benefit of anyone else who might not be responding in the "traditional" manner.  Even with his 50+ successful Grover's treatment cases, I have to think that number is not nearly enough to demonstrate all the possible variations in symptoms, reactions, and recoveries that could potentially be out there.  And I think I might be one of these exception-to-the-norm cases.  Good luck to all.

Chuck
Title: Re: Grover's disease
Post by: playagirl on Thursday January 11, 2007, 10:15:08 PM
I finally started on the Chemet one week ago and of course nothing to report. As I have said before I took Accutane for about four months and really wish I hadn't. In Sept. my skin became very red and extremely sensitive, it is still that way.Actually I feel like I have the flu all the time.My derm thinks it's the Grovers but I'm not so sure. Has anyone out there experienced this? Also my skin is so dry and no amount of lotion seems to help. Since i have to pay for the Chemet myself I was hoping for quick results.
Title: Re: Grover's disease
Post by: mepen on Thursday January 18, 2007, 02:12:21 AM
Because I'm not responding to the Chemet as the typical Grover's patient should ---  flaring again and developing new lesions in new areas of the body ---  I was told to get reevaluated. It is possible I have a different disease (such as dermatitis herpetiformis and pemphigus foliaceus). So at this point, I am off the Chemet. However, I don't regret chelating because it has been beneficial in other ways....at least I detoxified some heavy metals and I find I'm more focused with less migraines, etc. I just wish that my skin disease was one that kept responding favorably to the Chemet. Unfortunately, my problem is different and so I have to find a different path. Good luck to all you Grover's folk and best of luck with treatment. I'll probably check back from time to time to see how everyone is doing and if anyone evolves into a different disease like I seem to be doing.......
Title: Re: Grover's disease
Post by: Jimbo on Thursday January 18, 2007, 03:06:04 AM
Hi Mepen,
I'm sorry to hear that the Chemet hasn't brought you the cure you had hoped it would.  I hope you will continue to post. I've always enjoyed your input here. It seems that Chemet hasn't helped anyone here for the exception of jd1. Forgive me for asking, but are you certain that your mercury level is down to zero?

Good luck,

Jim
Title: Re: Grover's disease
Post by: grantsoo on Thursday January 18, 2007, 01:29:35 PM
Hello.  I was diagnosed 2 weeks ago with Grover's via biopsy.  My family has had a lot of fun with the name of my latest disease.  The doctor prescribed a cream of 0.1% ectosone with menthol and said call back in 2 weeks.  If it doesn't work he will look at PUVA therapy.
My initial searches on the internet were hopeful, but when I found this group it was very sobering to find so many long term sufferers and no common effective treatment.
I haven't read all of the posts yet.
I call the doctor tomorrow and will report that the itching is better, however far from gone.  The lesions seemed to clear up but now new ones appear every day with most being just outside of where they were the day before.  It seems like I'm chasing them out from a central core.
I have them up the back of my scalp and they have not improved at all since I can't effectively get the cream to them unless I shave my head.  I see the ectosone is available in a scalp lotion so I will ask for that.
I am nervous about the ectosone since I also have Central Serous Retinopathy, which according to the CSR forum has been linked to cortisone.
Also, what was frustrating was that I had this incredible itch for a year and a half before I could persuade my GP to send me to a skin specialist.
Title: Re: Grover's disease
Post by: mepen on Thursday January 18, 2007, 02:41:20 PM
Jimbo,
Even after six months of chelating with Chemet, my mercury remains the same at <4 according to Quest lab.  My mercury count is neither up nor down before or after flares and flares happen on or off the Chemet. I had a stretch where I was doing very well, but then flared quite badly a few days after Thanksgiving. I thought I may have been exposed to mercury via food or from a different environment, but blood tests after Thanksgiving weekend revealed that my count was the same. I chelated with Chemet immediately, nevertheless, but still I was unresponsive and continued to flare badly and still the mercury level remained the same. Obviously, I have something out-of-the-ordinary going on that is atypical of Grover's response and/or chelation. Fortunately, your skin has improved as your mercury dropped, correct? Your skin looks better and better as you keep chelating? And yes, you are right, JD has had wonderful success with the Chemet.  This leads me to these conclusions:  Either I am getting poisoned continually by something in my environment that I have absolutely no control of or I am dealing with some other skin disease. Because the location and look of my lesions are beginning to change, I think it is the latter. So, all you Grover's folk, don't despair, your results will be much different and better than mine........
Title: Re: Grover's disease
Post by: gsperez on Thursday January 18, 2007, 04:47:47 PM
mepen,
I hope you will continue to post as you find out if something other than, or in addition to, grovers has been the culprit here. I have some things that seem to be out of the norm for grovers as well. I have not convinced my derm of the benefits of chelation yet. Truthfully, just because we have had biopsies that confirm grovers, that doesn't mean that all of our lesions are exclusively grovers. Though it has been a long while since I've had a truly painful rashy flare up, I have never experienced any abatement  of the crusty bumps. They by themselves are sometimes painful and certainly irritating, but sans the bad red raw skin that some get with this (and I did initially) it is more livable. I wish you well as you work to figure this out. Keep us posted! Georgia
Title: Re: Grover's disease
Post by: Dglas on Thursday January 18, 2007, 10:34:08 PM
My wife has been newly diagnosed with Grover' disease.  10 years ago she suffered the disease for 12 months but was not diagnosed. Allergist thought it was food allergy and put her on a strict diet.  In due time everything cleared up and we reasoned that it was indeed food allergy.

Six months ago it was back with a vengeance.  It is now front back, legs, arms and scalp.  She suffers terribly from the itching - especially to the scalp. After several doctors, including her dermatologist, threw up their hands and said they didn't have a clue, she finally found an allergist that had the good sense to biopsy - hence the diagnosis.

She has been given Cortisone shots and Prednisone.  She has been prescribed ointments such as Clindamycin for he body, Fluocinolone Acetonide for her face(she has a few spots on forehead), and Elidel (pimecrolimus) for her scalp.
The Cortisone works a little as does the Prednisone(but bad side effects).

Her allergist tells her that usually one only has these outbreaks twice - about 10 years apart and each time they last about 48 weeks.  Reading on this forum makes one question that statement. We are searching for a dermatologist that has some knowledge of Grover's disease.

The cumulative effects of constant itching and disfigurement of her body is taking its toll on her well being.  At this point she would be forever grateful to find anything that would at least relieve the itching scalp.

Doug


Title: Re: Grover's disease
Post by: grantsoo on Friday January 19, 2007, 11:28:57 AM

Six months ago it was back with a vengeance.  It is now front back, legs, arms and scalp. 
She has been given Cortisone shots and Prednisone.  She has been prescribed ointments such as Clindamycin for he body, Fluocinolone Acetonide for her face(she has a few spots on forehead), and Elidel (pimecrolimus) for her scalp.
The Cortisone works a little as does the Prednisone(but bad side effects).
 At this point she would be forever grateful to find anything that would at least relieve the itching scalp.
Doug
I too would love to find something for the scalp.  As mentioned in my previous post, I'm going to see if I can get a script for Ectosone scalp lotion today.  If so, I'll let you know how it works.
Also, I was on prednisone for a kidney problem many years ago........nasty stuff.  I was up to 3 extra drugs to counter the side effects.  I ended up with fat redistribution to the face (known as moonface) that did not go away completely when I stopped the treatment.  I would consider that as very last resort.
Title: Re: Grover's disease
Post by: jd1 on Friday January 19, 2007, 08:14:06 PM
Hi Doug and Grant.  Welcome and sorry you qualify to be here.  When I first started researching the disease, everything said that most cases clear up in 6 - 12 months.  Most of us posting here do not fall into that group.  I hope you experience quick relief.  Please be careful with what you accept from your docs.  Many docs seem to treat with a velvet sludge hammer.  I think most or all of us would agree that steroids don't work - the relief is short-term, the rebound sucks, and the side effects combined with the lack of long-term relief makes that whole path a waste of time at best.  Grant, please check out PUVA therapy before accepting that treatment.  I researched that quite a few years ago, and I believe that I came to the conclusion that it would increase the damage to my skin, age the skin, and increase my chances of skin cancers.  Doug, with all due respect to your allergist, I have never ever heard of Grover's acting in that way (48 weeks every 10 years) in either the transient or the persistent form.  I have to wonder where he got that from.  There's a ton of real-life information in these posts, I have experienced relief as detailed in previous posts, but it seems that not everyone is having such luck.  Please post your experiences as you try different methods.  Good luck.  Jessica
Title: Re: Grover's disease
Post by: Jimbo on Saturday January 20, 2007, 03:15:49 AM
Mepen,
Since starting chelation a year ago, my skin is somewhat better. I'm far from cured. When you consider that I started with a mercury reading of over 29, you would think that I would have seen dramatic improvement by now, but I haven't. I'm very skeptical about my chances. For the exception of jd1 the results of people here who have tried Chemet seem to contradict Dr. Dantzig's findings. That being said, I wouldn't give up so soon if I were you. If you are not getting any side effects from the Chemet and it's covered by your health insurance, why not continue. I believe that jd1 told me that she's been chelating for around 2 years now. I'm assuming that you had a biopsy done and you were told you have Grovers. If so, there are other conclusions to draw. One, your body may be releasing mercury from more deeply rooted areas. Two, the Chemet may not be chelating for you for whatever reason. Can you not find a lab that will give you an accurate reading on your mercury level? Have you written to Dr. Dantzig recently? All I'm saying is don't give up on chelating until you are satisfied that you have explored every avenue and given it every opportunity to work.
Pardon me for imposing Mepen. I know it must be discouraging for you. It certainly has been for me, but I'll continue to chelate if for no other reason than I don't have any other alternative.

Good luck,

Jim
Title: Re: Grover's disease
Post by: mepen on Thursday January 25, 2007, 12:26:40 AM
Hi Jimbo,
Thanks for you concern. Yes, I've been in contact with Dr. Dantzig. He saw the new lesions and gave me this recommendation: "...definitely get reevaluated...not sure you are dealing with Grover's.....does not look like Grover's and your distribution is very atypical. Also, Grover's is not painful and in fact pruritus although it can be severe, probably occurs in less than half the patients." I also asked Dr. Dantzig why mercury values from Quest lab always come back as <4, is it because they can't measure values <4? He said "It does not take much mercury to flare Grover's( in our studies levels as low as 1-2 micrograms could elicit a flare) and Quest can measure it less than 4 but they don't like to give out the results because there is a greater margin of error at low levels."

So, because I'm not sure I'm dealing with Grover's anymore, and I continue to flare on or off Chemet, and Hg levels are always <4 (although they may be falling, but even if so, I'm no better because of it), I've decided to discontinue Chemet, at least for the time being. So that is where I'm at, for now. I can certainly understand why you continue to chelate: you were mercury toxic to begin with, you have seen progress by chelating, you have classic Grover's symptoms (on torso), and the docs and you feel certain you have Grover's. Since my situation has changed, I'm changing course. I will continue to look at this board. I will give updates should I have any news to contribute. Keep posting Jimbo. I'm interested in your progress and everyone else too....
Title: Re: Grover's disease
Post by: grantsoo on Friday January 26, 2007, 10:06:50 AM
The CSREYE forum has reported that corticosteroids (even topical) have been linked to triggering Central Serous Retinopathy. I have had had CSR for about 11 years and have some vision loss as a result.  I would hate to trigger another episode.  Does anyone else have CSR or heard of a link to it after using steroid cream?
Title: Re: Grover's disease
Post by: grantsoo on Monday January 29, 2007, 03:12:46 PM
I've been on the Ectosone scalp lotion now for 3 days and have significant improvment.  Much less itching.
Still have to attack new lesions everyday on chest and back with the Ectosone cream.
Title: Re: Grover's disease
Post by: jd1 on Monday January 29, 2007, 03:22:43 PM
Hi everyone,
 
I want to share information from a couple of email exchanges with Dr. Dantzig.  The easy stuff first.  Mepen previously posted that he told her that as little as 1 - 2 micrograms of Hg could cause a flare.  I asked what that means in today's polluted world.  Dr. Dantzig said it is exposure that could come from 1 contaminated meal or possibly polluted air.
 
I also told him that the people on our forum weren't experiencing the hoped-for relief and asked if he had any thoughts.  He said it's possible that some of us have been misdiagnosed.  He is confident in the mercury/Grover's connection due to both lab results and the conclusive clinical responses he has seen.  Some of his patients have relapsed, which he attributes to the easy exposure to mercury in this polluted world, but everyone clears when they restart on Chemet. 
 
I asked him if it was possible that Chemet was binding to other heavy metals before cleaning up the Hg, and therefore people weren't clearing in the expected time frame.  I referred him to rhinebeckhealth.com/rhc/heavy_metal.php.  If you go about 2/3 of the way down, under Use of Chelating Agents, you will see where the author states, "The affinity of DMSA for metals is in this order: Cd++ > Pb++ >Fe++ > Hg++ > Zn++ > Ni++."  - the point being that Chemet prefers to bind with 3 other heavy metals before mercury.  Dr. Dantzig said that this may be the reason why some people respond poorly.
 
Most interesting to me was this part of an email, which I quote from, "While this is only speculation, mercury is INTRAcellular and it may be possible that it forms a reservoir in the basal layer of the epidermis which would make it difficult to remove and would provide a constant level of the toxin to the epidermal cells combining with the mitochondria and preventing the production of intracellular adhesion protein. As an analogy, we recently showed that a skin tumor (dermatofibroma) is caused by arsenic. While patients have very low blood levels, they have extremely high levels in the tumor and thus the metal has formed a reservoir in the tumor causing damage to, and proliferation of, endothelial cells. Perhaps a similar scenario is happening with mercury and the epidermis."
 
Isn't it amazing that they have found another skin disease associated with heavy metal toxicity?
 
I hope you all find this information interesting, useful, and hopeful.
Title: Re: Grover's disease
Post by: mitch itch on Wednesday January 31, 2007, 09:07:10 PM
Hi folks.   I haven't posted for a long time, but felt the need to see how everyone is doing.   Jimbo, sorry you are still struggling and that the chelation has not been totally satisfactory.   You might remember I am the one that posted the link to Dr. Dantzig about 18 months ago. 

 My situation has not improved.   After four negative biopsies for Grovers, pemphigus, nummular dermititis, etc and my derm finally threw up his hands in defeat. So, I got an appt. with the Dean of the Derm dept. at the local University Hospital.  He was intrigued and said "we'll go at this slow and find a way to treat it".   Well, 6 months later he called in a Neurologist who is now studying to be a Dermatologist, cause he wants to treat derm issues that are neurologically based.  The suspicion being that my nervous system was creating inflamation at never endings. After lots of testing--several drugs (Neurontin, Dapsone and Doxipen, none of which made a difference) they sent me on Grand Rounds and had 30 derms with varying degrees of experience look me over.   Their current "attempt" is to put me on  twice weekly narrow band UVB light treatments.   This is the beginning of the 4th week with no real improvement. 

After this run, I am going to talk to him about allergies, acupuncture and about anything else I (or you) can think of.   jd1 it sounds like chelation has worked for you and I'm happy about that.    I may even talk with him about that even tho' 3 biopsies for Grovers were negative.   Actually, I don't think it is Grovers since I have it all over my body--right now my legs are a mess, my shoulders are scarred, my back gets them a lot, my torso a few, my arms alot---etc.   Small hard pimples that BURN break out in different spots each day--I never know where they will pop up, sometimes singly, sometimes in clusters of 5 or 6.  Halobetasol/Aquaphor generally stops the burn very quickly, but after 2 years, how long can I keep that up?  The worse times are 8 am and 8-9 p.m.

 They even did an MRI on my neck, thinking a neck injury may have triggered the whole thing, since for years I have had severe itching (with no break-out) on my forearms (sorry, the technical name has slipped my mind).   MRI found I have severe stenosis of the cervical vertebrae, but since I have no pain from that, we are NOT doing any surgery to correct it, thank you very much.    I have found all of your recent postings interesting and have empathy for all.    A recent posting about Chemet(sp?) binding first with metals other than Hg is very intriguing.     Wishing you all a speedy recovery.    Mitch :)
   
Title: Re: Grover's disease
Post by: gsperez on Wednesday January 31, 2007, 09:15:35 PM
Mitch, et all, I'm really curious about several posts recently both by Mepen and you Mitch, where your docs are now thinking you don't have Grovers or perhaps have more than just Grovers. Are biopsies that inconclusive? The only reason my doc said I had Grovers was the biopsy came back that way. But like so many of you, I have not responded to anything other than slight improvements with some heinous stuff that you can't use everyday or for long periods of time. Is it common for the biopsies to be wrong? I'm going for a derm check-up soon and don't even know what angle I want to approach her with (chelation, more biopsies in case it's something else etc...). Thoughts are appreciated! Georgia
Title: Re: Grover's disease
Post by: mepen on Thursday February 01, 2007, 04:52:02 PM
In this case, a skin biopsy is not completely inconclusive but neither is it so conclusive it can pinpoint the actual disease. For instance, my biopsy simply came back "acantholytic dyskeratosis" which fits a number of different blistering skin diseases. However, based on biopsy and presentation of symptoms, the docs concluded Grover's (way back when). There are immunoflourescence studies and I believe IgA studies and a number of other studies that can be done to help narrow the diagnosis further by including or excluding diseases such as Pemphigus, etc.

However, the problem with all these biopsies is that they are based on ONE lesion. For instance, does one biopsy taken from one lesion taken from one area (my leg) actually represent what is going on with every lesion on my body? And does an inactive lesion present differently under a microscope than an active lesion?

There are a hundred variables. I suppose to get a more accurate study one would have to have multiple lesions biopsied and have multiple tests performed on the lesions. Good luck getting your doc or insurance to okay that. And then, if you really want to worry, there is always the margin of lab mishandling or lab error too.

Science is only as advanced as it is at any given time. People experiencing persistent Grover's may actually have some "new" disease not yet identified or even able to be identified by the tests we have now. It is easy to get frustrated, but on the other hand, we humans only know what we know at any given time and we work with what we have.

That is why scientific studies are so important. Data is brought together and analyzed to reach the best conclusions we have at the time. Dantzig seems to be the only derm paying scientific attention to the Grover's issue. He has hit on "something" with his mercury correlation theory and it is worth looking into.

No offense, but I don't know why you are just thinking about the Chemet. What if you are in the percentile it helps? It is far less dangerous than the other drug treatments mentioned. When I heard about its high success rate, I didn't wait another minute trying to get it. It took me awhile but in the end, my PCP prescribed it and monitored me. While it was not the silver bullet I had hoped for (either because I do not have Grover's or I am in the low percentile it does not help or I keep getting toxic...who knows...), it did not do me any harm, in fact it did me good It lowered my heavy metals and that is truly a good thing. You want my thoughts: Here goes -- give the Chemet a try. If it does not work, ask for another biospy with more specialized tests done on a new, active lesion, then go from there. In the end, though, do what is right for you. There is no definite answer to this. We are all struggling. Good luck. Keep posting. 
Title: Re: Grover's disease
Post by: mitch itch on Thursday February 01, 2007, 08:28:29 PM
I agree that biopsies  are not totally the final answer, but my four were from different parts of the body (over a period of 4 months) and each "lesion" was at a different stage.   All came back as negative for Grovers and Pemphigus foliaceous.   

I'm willing to wait for another 4 weeks until the light  treatment regimen is finished before  having the heavy metal and/or the allergy testing  done.   Tho, I am positive this is an internal thing--either allergies or neurological.  I will pre-warn my derm who is willing at this point to try anything, so I feel certain he will listen to the heavy metal and allergies ideas.  We are also leaving for two weeks around the 1st of March for Argentina and Uruguay, so I would just as soon wait until we get back.   Besides, I'll be all pre-tanned for the sunny weather.   :D   Mitch Itch
Title: Re: Grover's disease
Post by: gsperez on Thursday February 01, 2007, 09:26:03 PM
Hello again - Mepen, no offence taken. My docs have been less warm to some of the self researched items like chelation and have instead chosen to put me on any number of topical treatments such as Clobetesol, Triamcinolone, etc.. I think the fact that a lot of docs barely familiar with Grovers, look at the reference books saying that 8-12 months and this should pass, may try topical before reaching for internal medicine. I think now I can go back more convincingly to my doctors with the Danzig data, some of your experiences and my own frustration that this has been going on a long time with little improvement and a growing number of areas affected well beyond the torso and get more support form them. I'll keep you posted.
Title: Re: Grover's disease
Post by: Beverly911 on Sunday February 04, 2007, 12:42:44 PM
Hi All,
I don't fit the mold for Grover's, but was diagnosed with it 4 years ago.  I'm 63, female, and have it from head to ankle (it's not supposed to get in the hair, according to my derm).  The only relief I had from it was Prednisone I took for a week for a severe outbreak of excema.  After I got off the Prednisone, the Grover's came roaring back.  I refuse to take Prednisone on a regular basis and my derm isn't suggesting that I do.  I have been prescribed a myriad of cortissone creams and meds, including Dovonex, and Doxipine, Atarax, with no relief.  I'm having a horrible outbreak right now that the doc thought initially was scabies and has now guessed it's pruritis.  I did spend a lot of time in the sun as a young girl (I live in California), and have been on Enbrel injections for psoriatic arthritis, and Klonopin for anxiety.  I used to work out alot, step-aerobics for 20 years, but never did sweat much during those workouts.  Now, I just walk.  Has anyone been able to tie any of their medications to Grover's?  Has anyone been able to tie PTSD or stress to Grover's?  I have not had the PUVA treatment yet and will ask my derm what she knows about chelation.  Mitch Itch, I'm so sorry you are having such a hard time of it.  Our symptoms sound very similar.  Good luck to everyone.  There's got to be a cure out there somewhere!   
Title: Re: Grover's disease
Post by: jd1 on Wednesday February 07, 2007, 11:22:57 PM
Hi Mitch, I'm sorry you are not doing better.  It's nice to hear from you.  I remain grateful to you for finding Dr Dantzig's article.

I ran into a man on the beach in HI last year.  He was a doc and was wondering about my get up (the sun suit I wear to protect from further damage stands out next to everyone else's almost nothings).  He was asking about my deal and told me about his....he said he was literally ready to take himself out, he was in so much pain, no one could figure it out.  It turned out he had a case of shingles that didn't present as a normal case - it took them forever to figure out, several docs told him they had no idea and he'd be in pain for the rest of his life, etc etc.  You triggered this memory when you were talking about the neurologist and something at the nerve endings causing inflammation.  The probably fairly worthless point here is that if it's not Grover's... not pemphigus...etc, it could be absolutely anything perhaps showing up in an unusual fashion, in which case all you need is a doc who will think way outside the box..easier said than found. 

Re the heavy metal testing:  I think most typical docs do a blood test.  But the stuff I've read by the people who do this all the time for the autistic kids is that the blood test measures recent exposure.  Your organs, CNS, skin cells can be poisoned with a build up of mercury, and the blood test may not reflect that fact if the toxicity is from old exposure.  J
Title: Re: Grover's disease
Post by: platypus on Friday February 09, 2007, 02:56:12 AM
Hi all! I just registered after reading all 25 pages here and seeing how many people are afflicted with this Grover's thing - and how discouraging the prognosis is. 

I'm a 52 YO male and have had a rash on my torso for as long as I can remember.  Over the years my various primary care physicians have suggested a range of things like changing laundry detergent and such, but never thought to refer me to a dermatologist.  I recently had 2 amalgam fillings replaced with composites and "hey presto" broke out in a severe rash which I've now had for the past 4 to 5 weeks.  Looking at hundreds of unpleasant photos on the DermNet database I suddenly saw the examples of Grover's and that looks exactly like the rash that I have - very distinctive.  I am (was) a fish eating vegetarian so the mercury connection and the amalgam all starts to explain things - maybe.  Two years ago I asked for a mercury test (which happened to be done by Quest Diagnostics) along with my usual annual blood tests and it came back with a count of "5" - within normal range - but not "0" which apparently Dr. Dantzig's work suggests it should be if a Grover's patient has a chance of reducing or at least clearing up the rash.  So I saw my doctor again 3 days ago and am now waiting for the dermatologist appointment - which is a 3 month wait here in Massachusetts.  I might be able to get in earlier if there is a cancellation.

I gather the odds of most derms knowing about Grover's is pretty slim so I will take in various excerpts from this web site including the quotes from Dr. Dantzig, and some photos from the DermNet database.  Hopefully this will be enough for the derm to follow up the idea and perhaps start with a biopsy.  In the meantime I have another filling to be removed by my dentist next week and am starting to worry that that might worsen my rash if indeed loosening the mercury there into my system is causal.  I guess it has to come out either way, although I have a mouth full of other amalgam fillings that would also have to be removed if I understand the Dantzig approach correctly.

More later...

Platypus.
Title: Re: Grover's disease
Post by: jd1 on Saturday February 10, 2007, 02:52:24 AM
Hi Platypus, welcome.  Perhaps the good news is that if you reacted so strongly to mercury exposure upon amalgam removal, maybe you will react strongly to chelation.  You seem to be good at online research - there's a lot online about how to remove amalgams & attempt to minimize Hg exposure during the process.  You may want to check it out.  I think that many of us have found that the derms know Grover's but are utterly unwilling to consider Dr. Dantzig's research.  I think all of us have had to push hard to make our case and present the research before finally getting the Rx.  "Normal" hg levels mean nothing - several of us have or started w/ less than 10 hg but with long-term disease.  Please let us know how you do.  Good luck w/ amalgam removal.  Jessica 
Title: Re: Grover's disease
Post by: ezdogg8 on Sunday February 11, 2007, 04:50:36 PM
I have found something that actually worked to contain my Grover's Disease.  :o
I was afflicted for five years and it was growing progressively worse, more and more sores, larger and more painful. Many bled. I tried everything the doctor prescribed. Nothing helped at all.

Then I started taking a 400 i.u. capsule of vitamin D three or four times a week. In two weeks virtually all my sores were gone and are now totally healed. I have had no new sores in about one month. It really was like a miracle. I also keep my skin well moisturized. I use Booth's Original Bath and Body Oil (available on line). It is non greasy.

I'm not sure this will work for everyone, but it is well worth the try. Hope it works for you. My skin looks awesome!
Title: Re: Grover's disease
Post by: platypus on Sunday February 11, 2007, 09:09:06 PM
Then I started taking a 400 i.u. capsule of vitamin D three or four times a week.

Thank you ezdogg8 - I will be trying this straight away!  Can't hurt.
Title: Re: Grover's disease
Post by: JoeM on Friday February 16, 2007, 02:05:44 AM
Hello Everyone,

I too share Jimbo's and Mepen's disappointment with the Chemet. It is no longer working for me. My last biopsy came back postive for Grover's, so I know that I was not misdiagnosed. I was on the Chemet for 6 months. I will say that there was a period for about 6 weeks in which my skin looked great. I do not know if at this point it was from the chemet or just a brief period free of lesions. As we all know this disease does not seem to have a common thread on what causes a major flare in our skin. Sweat, heat, food, temperature, showers, it is hard to make sense of most of it. I guess the common thread is that we all had some severe sun exposure in our younger years.
 Dr, Dantzig is not sure whats not working here with me. He did state that chelating more than 6 months is not neccesary and that the chemet does not bind with other metals in the body before it can attach itself to the mercury. I too had my one amalgams removed and have been seafood free since chelating. Not sure where I am getting Mercury exposure if this is the case.

Is JD the only success story on here? Any others having any "long term" relief with chelating? My apologies if I seem to have lost hope, I am just as frustrated as the rest of you. My next course is the Vitamin D...I have not heard this one before...what do I have to lose.

Seeking some form of relief...JoeM

Title: Re: Grover's disease
Post by: Jimbo on Friday February 16, 2007, 02:51:47 AM
I am posting an email that I recently received from Dr. Dantzig at his request.

Dear Jim,
    I have talked to a few people from the Grover's chat site recently who have experienced  resistance to the therapy, which I have not seen in my practice. I have been thinking about the reasons for these recurrences and I'm hoping you can post this note for their information. While I'm sure that mercury is the cause of Grover's in conjunction with damage to the basement membrane of the skin and this is well supported by our studies, recurrences or resistance to treatment could occur for 3 reasons:
 
1.  New exposure to the mercury and it takes very little to cause a flare.
 
2.  Mercury may be trapped in the body and slowly released. While I have no proof that this is possible, we have recently shown that arsenic can be trapped in the body and form reservoirs, even when it can not be detected in the blood. Perphaps mercury can act in a similar manner.
 
3.  Damage to the basal cells of the epidermis and the ability, to produce intracellular adhesion protein may be permanent. I initially thought that this did not happen but we have a series of patients with  macular degeneration and Parkinson's disease, all of whom have Grover's and these diseases may all be the same disease, namely chronic mercury poisoning in susceptible individuals. However, in macular degeneration and Parkinson's disease, the damage is permanent and it may be that in some people, damage to the basal cells of the skin may be irreversible in a similar manner causing a flare whenever the skin is stressed such as through dryness, sweating, sun exposure, etc.
 
   Unfortunately, this is an area of medicine where there is almost no research and very little understanding of the effects of the environment on the body but I hope this information will be helpful. We are continuing to study these areas intensely and will try to help people as much as we can.
 
    With best regards,
         
                         Paul Dantzig
Title: Re: Grover's disease
Post by: platypus on Friday February 23, 2007, 03:38:57 PM
Then I started taking a 400 i.u. capsule of vitamin D three or four times a week.

Thank you ezdogg8 - I will be trying this straight away!  Can't hurt.

Today is 12 days since I started taking Vit D supplements.  I am sad to report that it has had no effect for me.  In fact, my lesions are worse than ever (which i would not attribute to the Vit D either way).  Pushing to get my derm appointment earlier - not that I expect any solution there real quick. 

In the meantime, I find myself applying a lot of cortisone cream to relieve the irritation on my stomach and back.  I also spoke to my dentist and cancelled my second amalgam replacement procedure until a plan of action is determined.  My dentist did say that she could use more careful removal procedures but that she already was careful as a general practice.  I really don't know if the amalgam/mercury cause is real or not, but it certainly seems causal given my amazing outbreak straight after having 2 filings replaced with composites.  I remember "tasting" the silver chips in my mouth during the procedure and spitting out chunks of metal (normal).  My dentist also mentioned that composites aren't failsafe either as they contain formaldehyde - pick your poison!  But of course, if it IS mercury causing the Grover's then, sure, get all the amalgam removed (in my case that will be expensive because at least 4 of my 6 remaining amalgam filings will require caps as the filings are too big for composite material.

I guess all I can do at this stage is wait and see the derm and see if she will take a proactive approach to trying to reduce/eliminate the skin condition (since I've not had a biopsy it is only my assumption that I have Grover's, based on the photos I've seen of it on the derm database - mine looks exactly like that).

Best wishes - hope someone out there has some success.
Title: Re: Grover's disease
Post by: jd1 on Friday February 23, 2007, 04:37:58 PM
Hi Platypus,  I don't think that there's anything great to stick in a tooth.  There are a lot of potential health issues with plastics, one of which is the potential estrogenic effect, another of which appears to be formaldehyde (disgusting - I didn't know about that).  You would think they could come up with a better way....There are other issues too, I can't remember.  Anyway, I replaced my three with porcelain, which I was told was as inert as it gets.  That's not perfect either - they have to put down a layer of the plastic material which I understand acts as the cement for the porcelain piece, it's in molars which means that I risk wear and tear on the opposite tooth, and already one split and my choice was to either drill out the damaged porcelain filling and try again or fill it with plastic.  I chose the latter option.  The process is an ordeal - they drill out the amalgam, take an impression, fill temporarily with plastic, then pop out or drill out the plastic and replace with the newly made porcelain.  Plus it's expensive - $1700 for 3 fillings after insurance reimbursement.  I've been taking D in my multivit and calcium supplements for years plus Dovonex is Vit D3, and I used that for about a year, and it never did much for me either.  Sorry that it wasn't the magic bullet for you.     
Title: Re: Grover's disease
Post by: grantsoo on Saturday February 24, 2007, 11:49:00 AM
An interesting observation this week.
The itching was intense and I was getting no relief from the cortisone cream.  Very discouraging.
Then I settled into a hot bath with a book for about a 1/2 hour - not because of the Grover's, just something I do every couple months or so.
To my great surprise, when I got out of the bath, the itch was almost gone.  I did not apply any cream and it started getting worse over the next day so I did the same thing again with the same result.
I'm very curious now about whether this is just coincidence, or if the bath did something to temporarily break the itch "cycle."

Title: Re: Grover's disease
Post by: JoeM on Tuesday February 27, 2007, 02:23:22 AM
Thanks Jimbo for the post from Dr. Dantzig...I am hoping I do not fall into catagory three. I have an appopintment with him this coming Monday March 5, I'll let you know what he has to say about my Grover's.
I just completed my first week of Vitamin D...not improvment with that either.

JoeM
Title: Re: Grover's disease
Post by: mepen on Tuesday February 27, 2007, 11:24:59 PM
Hi Joe,
Yes, please let us know what Dr. Dantzig says. I have not had any more major flares with new lesions since the episode around Thanksgiving/Xmas but my old lesions keep flaring intermittently. Like you and like everyone, I'm tired of the disease.
Title: Re: Grover's disease
Post by: Sundowner on Wednesday February 28, 2007, 08:30:54 PM
Hello All,

Just an update on my Chemet progress.  Unfortunately, it looks like I am one of the patients who does not respond.  I have been on Chemet under Dr. Dantzig's care for 15 weeks now.  I did have a brief period of improvement at the 7-8 week point, but that didn't last.  I advised Dr. Dantzig of this and he is disappointed of course.  He believes I might be a victim of his theory #3 in Jimbo's post above (i.e. permanent damage).  He also told me he has two recent Grover's patients who, like me, have low mercury levels (1 mg), so it doesn't take much.  But they have responded to the treatment.  That tells me I must have an additional complication that prevents progress.  I have also been trying the Vitamin D regimen for a few weeks, but no improvement yet.  I now plan to focus on living with this stuff as comfortably as possible until there is another breakthrough. 

I am still confident that mercury is the culprit and chelation is the way to go.  However, we have learned that not all of us will respond.  That's life :)

Good luck to all.

Chuck   
Title: Re: Grover's disease
Post by: platypus on Monday March 05, 2007, 06:16:03 PM
Just got back from my first dermo appointment - interesting. (I got called in early after a cancellation).

First of all, she was quite surprised that I had not been referred to a dermo before now.  This is a reflection of the terrible state of our health care system in the U.S.  For the past 5 years at least, while I have had this skin condition, my former primary care physician had self diagnosed the condition based on his observations and determined that changing my bath soap should solve the problem.  He would not refer me to a dermatologist.  I have since left this doctor and found a better one who immediately referred me to a dermatologist.  Apparently, doctor practices are rewarded financially by NOT referring patients to specialists and I guess my former doctor was shooting for a record.  But I digress.

Today, I took all the material I had gathered, including photos from the DermNZ database of Grover's, and Dr. Danzig's emails above, and shared that information.  The doctor's judgement, initially, is that my condition looked more like Pityriasis Lichenoides Chronica (PLC) although she was not confident of that and hence, took a biopsy.  Should know the outcome of that in a week.

In the meantime, I continue to apply Betamethasone Diproprionate Cream USP (.05%) which does help to reduce the inflammation.  I'm also on a detox vitamin course.

Next step will be the biopsy report.
Title: Re: Grover's disease
Post by: grantsoo on Tuesday March 06, 2007, 10:48:04 AM
An update.  Had another episode on the weekend where the Betamethasone cream wasn't cutting it, the itch was terrible.  I thought I'd try the hot bath again and, unbelievably, I got about 12 hours of almost total relief.
I don't know why, but......... it seems to be a temporary help when it gets unbearable.
Title: Re: Grover's disease
Post by: platypus on Thursday March 08, 2007, 07:51:14 PM
Just got back from my first dermo appointment - interesting. (I got called in early after a cancellation).

First of all, she was quite surprised that I had not been referred to a dermo before now.  This is a reflection of the terrible state of our health care system in the U.S.  For the past 5 years at least, while I have had this skin condition, my former primary care physician had self diagnosed the condition based on his observations and determined that changing my bath soap should solve the problem.  He would not refer me to a dermatologist.  I have since left this doctor and found a better one who immediately referred me to a dermatologist.  Apparently, doctor practices are rewarded financially by NOT referring patients to specialists and I guess my former doctor was shooting for a record.  But I digress.

Today, I took all the material I had gathered, including photos from the DermNZ database of Grover's, and Dr. Danzig's emails above, and shared that information.  The doctor's judgement, initially, is that my condition looked more like Pityriasis Lichenoides Chronica (PLC) although she was not confident of that and hence, took a biopsy.  Should know the outcome of that in a week.

In the meantime, I continue to apply Betamethasone Diproprionate Cream USP (.05%) which does help to reduce the inflammation.  I'm also on a detox vitamin course.

Next step will be the biopsy report.

Just got a call back from the derm - Grover's is confirmed by the biopsy report (the derm's initial diagnosis was wrong in other words).  She basically said she could do nothing since it is beyond her area of expertise.  I asked her to email Dr. Dantzig to see if he could recommend anyone in the Boston area (MGH perhaps) that has at least worked with Grover's.  Short of that, I might be plum out of luck.

Does anyone on this board know of an experienced Grover's derm in Boston? 

Thank you,
Title: Re: Grover's disease
Post by: jd1 on Friday March 09, 2007, 01:32:03 AM
Dermatology, I believe study of skin diseases....Grover's, I believe a skin disease....and it's beyond her area of expertise?  Maybe she should go back to school?  Ok, enough sarcasm.  I think you could call any number of derms in your area and get more help than that.  I have been to many, and not one said that she/he couldn't handle it.  Try calling down a list - the phone book or a list of docs covered by your insurance.  Good luck. 
Title: Re: Grover's disease
Post by: playagirl on Saturday March 10, 2007, 02:13:24 PM
Hello everyone: Hears an update on whats been going on with me. After going to my gyn in Dec she did blood work and found very low Vit D and she suggested  a mega dose of it, 50,000ui once a week but that wasn't enough so she upped it to twice a week. At this time my skin is almost clear and very little itcvhing. I also started on Chemet and took it for about three week and had it tested and it was down from 7 to 4. Unforturely, the end of Jan I had been feeling so bad I decided to go to Fla from Mexico and see a derm here. He didn't like what he saw so he thought I might have a problem with my lymph nodes and ordered a cat scan and sure thing four that are larger than they should be. Yesterday I went in for surgery to have one removed for biopsy.( praying nothing bad) I came off the Chemet until all this is resolved. If I don't go back on it I don't know what I'll do with the $1300.00 of it I have left. Will keep you posted. Penny
Title: Re: Grover's disease
Post by: Jimbo on Saturday March 10, 2007, 06:42:32 PM
Hi Everyone,
I recently had a hair analysis done through a naturopath here in Toronto. Got the results yesterday. My mercury level is down to 0.08, but the Grovers persists although it does seem to be better. I've been chelating for over a year now, first with Detoxamin and more recently with DMSA. The only other thing of significance in the hair analysis is an extremely high calcium level and extremely low manganese level. Just a thought, but others here might want to consider a hair analysis so that we could compared results and look for possible commonalities. Unlikely, but perhaps worth a shot.

Jim
Title: Re: Grover's disease
Post by: jd1 on Sunday March 11, 2007, 01:55:44 PM
Hi Penny, it sounds scary.  Please post back and let us know what happens.  You say your skin was better.  Was that after the D3 or after the Chemet?
Title: Re: Grover's disease
Post by: playagirl on Sunday March 11, 2007, 05:19:25 PM
Hi jd, I only took the Chemet for 3 weeks so I'm sure it's the vit D and I'm still on the mega dose 2 times a week. My skin isn't back to normal, whatever that is, but it is looking  better everday.Whatever else I have I wish I had never taken the Accutane. Live and learn I guess.
Title: Re: Grover's disease
Post by: jd1 on Sunday March 11, 2007, 10:39:12 PM
Playagirl, for me, at 3 weeks on Chemet I was thrilled b/c I knew it was making a change in my skin.  But I also know that if I had stopped at that point the progress would not have lasted.  I wonder what the D3 is doing for your skin....and I am curious, why do you wish you hadn't taken the Accutane?
Title: Re: Grover's disease
Post by: playagirl on Monday March 12, 2007, 12:47:08 PM
jd1, I have no idea what the vit d is doing except when it was tested in DEC. it was very low. At that time my skin was very red and so dry I was going nuts and that had been going on since sept. When my gyn came in the room I just started crying and that isn't me. I don't know if the Accutane  did that or something else. Unfortunately for all doc know there's still alot they don't know, especially about skin.As of now the grovers breakout has not come back, maybe vit d is the answer. Penny
Title: Re: Grover's disease
Post by: Jimbo on Wednesday March 14, 2007, 01:30:52 AM
Hi Playagirl,
Could you tell us how you were tested for a vitamin D deficiency? Good luck with that treatment. Sounds like it's working to some degree anyway.
Title: Re: Grover's disease
Post by: jd1 on Wednesday March 14, 2007, 04:13:09 PM
Penny & Jim, I also had D3 tested recently b/c I mentioned to the doc that my bone density was  low and asked what I could do about it.  He said D3 was key.  Jim, it's a simple blood test.  I was curious about your experience Penny b/c my D3 came out borderline normal/low.  I just wonder if it's somehow all connected.  Anyway, I posed the question to Dr. Dantzig re whether this is all coincidence.  He said D has no effect on intracellular adhesion protein but may help w/ the integrity of the basement membrane.  He said be careful w/ mega doses b/c D can be toxic, esp to the liver.
Penny, please let us know how the biopsy turns out.  Jessica
Title: Re: Grover's disease
Post by: jack G on Monday March 19, 2007, 04:24:37 AM
Hello all,
I have not been here for months.  I've read over a bunch of the posts over the past months and I have a few comments.  Removing amalgam is being taken way too lightly by many of you.  I've recently had my last ones removed but with great care.  I took a month or more finding the dentist who knew what he was doing, not letting any into your system or as little as possible.  Go on line to DAMS (not for profit) and they can send you a list of recommended dentists for your area who you can contact and interview.  I realize my outbreak as well as my other symptoms - extreme stiffness in shoulder and neck area, reduced energy, headaches, aside from the 10 day flare up of grover's disease that returned after 15 years, all came after I allowed a regular dentist to replace my cracked amalgam fillings.  Now after safely removing the remaining amalgam and four teeth - one root canal (also a bad idea to have root canals) three others infected down to the point they couldn't be saved aside from a root canal which I now realize is not recommended (talk to DAMS on this as well) At this point I'm 95% better - and the itching grover's has never come back after I got rid of it the first time with chlorella.  I still do the chlorella - have to build up slowly and not pull too much at a time.  There's also a product called liquid zeolite NCD that I've added that also seems to help for pulling heavy metals.
Best to all,
Jack G

Title: Re: Grover's disease
Post by: mepen on Monday March 19, 2007, 12:10:11 PM
Hi Jack G
Thanks for posting. What brand of chlorella are using?
Title: Re: Grover's disease
Post by: jack G on Monday March 19, 2007, 08:30:09 PM
Hi mepen,
I'm using Jarrow's Yaeyama.  I use it between meals so as to go for the storage stuff - at least half an hour before a meal or 2 hours after.  Go slow and feel your way if you decide to try it. 1 to 2 grams once a day and then maybe twice a day.
Jack G
Title: Re: Grover's disease
Post by: JoeM on Tuesday March 20, 2007, 01:28:06 AM
Hello Everyone,

I had my appointment with Dr. Dantzig the first week of March, sorry to report he did not have much info for me. He simply did not know why I was relasping. He had some theories that I believe Jimbo posted earlier.
He is certain as am I that Mercury is the cause of Grover's. So I went back on a low dosage of Chemet after a two month break. I figured there is no harm and I do not have anything to lose.
Mepen, I too have stopped forming new lesions, however, I have the same ones that continue to flare for a day or two. Following the flare the lesions will fade and get a little crusty but never disappear. I guess I have around 30-40 total.
As expected, the day I went to see Dr. Dantzing, I was in one of my non-flare states. He felt that I had so few that he asked if it really botherd me. I guess I am or should feel lucky as he has seen patients with over a thousand lesions.
I am going to get a "real" mercury level lab done this week from Labcorp. If not anything it will put my mind at ease to see the actual mercury levels in my body. Anybody on here do not waste your time with Quest. You'll never get a result lower than a 4.
Well this is it for now...sounds like we need to start looking at Vitamin D? Anyone else tried a mega dose?

JOEM


Title: Re: Grover's disease
Post by: mepen on Tuesday March 20, 2007, 12:27:18 PM
Thanks for update Joe. Yes, you are lucky only to have 30 to 40 lesions. I have 1,000's if not tens of 1,000's. No, I don't megadose with Vitamin D. Read about the recommended dose (FDA did raise it) but don't play with amounts way over because Vit D is toxic to liver. I still think mercury, heavy metals, or some other toxin is a factor or triggers a factor in Grover's. Some people have continued to clear with the Chemet and others are now having good luck with chlorella. Everyone reading who has tried something and has or has not had success with treatment, please keep posting. Please post again Joe wherever your treatment path takes you next. Let us know your Hg results from Labcorp. Interesting about the labs. Will you be seeing Dr. Dantzig again for followup?
Title: Re: Grover's disease
Post by: jd1 on Wednesday March 21, 2007, 01:44:59 PM
Jack, what did you replace your amalgams with?  And what did they do in the spaces where your teeth were pulled?
Title: Re: Grover's disease
Post by: jack G on Saturday March 24, 2007, 04:35:17 AM
Hey JD1,
The teeth with the amalgam could not be saved.  One that we were going to do an inlay on in order to save it turned out futile - the amount of tooth left before hitting the root turned out too little and we had to pull it too.  Generally this dentist uses a bell glass filling with no metal. I also pulled my one root canal and one additional infected tooth.  All were wisdom teeth except one molar next to a wisdom tooth.  All are filling in nicely with bone so far and I don't anticipate any holes needing to be filled.  I'm doing fine with the one side doing most of the chewing. A dentist named Cook - up above Green Bay Wis. is apparently the guru when it comes to this holistic dentistry.  You can find him if you google him on line.

Best,

Jack G
Title: Re: Grover's disease
Post by: jd1 on Saturday March 24, 2007, 01:41:22 PM
Jack, please tell me more.  I am grossed out by the choices for what we put in our mouths.  As posted before, I replaced my 3 fillings w/ porcelain, but it's not a great choice for molars, and before I was aware of this whole issue, I allowed several plastic fillings in my kid's teeth.  I have never heard of a bell glass filling.  Is that simply what it sounds like - glass - and how durable is it, and does it wear down the opposite tooth (porcelain does)?  Also, re not filling in the holes, I don't get that.  I have a friend who did the same - she lost a couple of teeth in the back of her mouth, figured who cares - but now she has suffered bone loss in those areas.  The loss has spread and now threatens the nearby teeth, and now she is faced with some nasty choices.  You are not concerned about that?  Thank you, Jessica 
Title: Re: Grover's disease
Post by: playagirl on Sunday March 25, 2007, 04:05:27 AM
Hello to all, thought you might want an update. I had a lymph node biopsy about two weeks ago, fortunately it came back OK. Not so good for the skin biopsy, I have a skin lymphoma called mycosis fungoides, never heard of such a thing. I'm not sure how Grovers fits in all this,maybe not at all. I'm headed to MD Anderson in Houston soon to see doc's there and see what they have to say and see what the treatment will be. Frankly it's a relief to find out what's going with my skin, I've been so miserable.Not exactly what I was looking for when I went to Fla. in Jan to see a new derm.Thank goodness he decided to do the biopsy.Will be sure to let you know how it goes in Texas. Penny
Title: Re: Grover's disease
Post by: mepen on Monday March 26, 2007, 12:10:40 AM
Sheesh Penny. So sorry to hear about your diagnosis. I am not familiar with mycosis fungoides, so I have just started to read about it online. Now I am wondering.....is Grover's commonly seen along with mycosis fungoides or is your presentation unusual? Please keep us informed of what transpires in Houston.
Title: Re: Grover's disease
Post by: jack G on Monday March 26, 2007, 06:13:44 AM
Hi Jd1,
Go on line to google and find Dr. Cook - in Wisconsin above Green Bay.  He's the source of the bell glass and my dentist, Dr. Sanders studied with him. 

An excellent place to start talking is with DAMS, Int. (dental amalgam mercury syndrome) a not for profit in Minneapolis telephone number removed--please contact this member via PM if interested.  They have loads of information and also both of these dentists' numbers if you want to talk to them.  They will also have a list of recommended dentists in your area.

As for the bone - it seems to be filling in nicely.  Dr Sanders did not even raise the question with me about whether it would properly fill in.  I do take a lot of vitamins minerals and supplements, but my feeling is that it should in any event not be an issue.  Talk with these more informed people above.

Best Regards,

Jack G
Title: Re: Grover's disease
Post by: platypus on Monday March 26, 2007, 06:41:42 PM
An update:  I have not contacted Dr. Dantzig as yet (my derm did speak with him and encouraged me to travel to NY to consult with him).   Based on people's reports and experiences here, I think the general drill would be to have my amalgams removed and go on a chelation course with Chemet, measure mercury levels until zero - and see if that works.

Unfortunately, that is all out of my price range at the moment.  The dental work would be around $3 to $5K minimum and the trips to NY and back, time off work, etc. well - I just can't do it I'm afraid.

In the meantime I've made contact with Jonathan Campbell who I guess you would call a natualist or herbalist (not sure he would agree with that).  But here is his web site - I liked him and his approach.

http://www.cqs.com/index.html

My rash has cleared up to around 80 to 90 percent clear (the remaining lesions are drying up).

How is this?  Don't know for sure since I'm doing a number of things at once so it could any, all, or none of the things I'm doing.  But here is what I am doing.

1) applying the betamethasone creame on a spot basis to existing lessions - probably about 10 to 15 spots now versus 100+ a few weeks ago (after having 2 filings removed which seems like it caused the flare up).

2) continuing to take Vit D daily

3) as of 5 days ago, and based on recommendations from Jonathan Campbell, started building up to the following vitamin intake:

Vit C - 6000 MG/Day 

Lysine at 6000 MG/Day
 
MSM - 2000 MG/Day
 
Celantro (fresh in/on food - it tastes great)
 
Chlorella - 6000 MG/Day

This is what Campbell recommended as a natural way to get rid of mercury toxins from my system.

Never taken so many pills per day in my life - however, I must admit, my skin is feeling fabulous, even with the remaining rash.  My skin feels smooth, non-oily and firm and clear - kind of glowing.

Just wanted to share this for now - take it for what it is worth - your mileage may vary.
Title: Re: Grover's disease
Post by: jd1 on Monday March 26, 2007, 08:15:13 PM
Platypus, what does your guy think about doing all this but leaving the amalgams in?  The stuff I've read indicates that your body won't ever clear of Hg because you will be constantly re-poisoning yourself from your teeth.
Title: Re: Grover's disease
Post by: platypus on Tuesday March 27, 2007, 12:43:49 AM
Yes, I know, and he is aware of that too.  The program he started me on above is intended to be a pre-amalgam removal starter pack.  After removing the amalgam (and I don't know when that will be done yet), then he said he would adjust the program for a more aggressive mercury detox approach.  (His own daugther went through a similar problem.)

At this stage, I will be happy if I can minimize the rash to the state it was before I had the outbreak immediately after my last filling dental work (which of course was not done according to the IAOMT protocol for amalgam removal).  If you will, this is a "patch job" until over time I can afford to get all the amalgam removed correctly (7 teeth).  Not ideal, but so far I am seeing some positive results - and I hope they continue to improve.
Title: Re: Grover's disease
Post by: jd1 on Tuesday March 27, 2007, 03:08:03 AM
You know for me, the one really good thing I can see about 10 years of Grover's Disease, months of research, all that stuff, combined w/ Dr. Dantzig's research, is that I now know that Hg is super toxic in me.  Now Grover's is controlled, mood is more stable, I haven't taken a prescription sleeping pill since January (after fully 7 years on them), I swear I think my allergies are better...all of which are awesome lifestyle changes.  But how about the connection to the serious diseases...macular degeneration, Parkinson's, Alzheimers, auto-immune disease..the list goes on and on and on.  If the choice were between getting the amalgams out or feeding the kids, I would still have my amalgams.  If the choice were between popcorn for dinner for me for the next two years or getting the amalgams out, I'd be eating popcorn.  Coming back to the good news...we all know that we are Hg sensitive, we have learned about Hg toxicity.  Our skin is our fire alarm for exposure, and God I hope we all have and can clear out fast enough before experiencing the permanent damage of the serious diseases.
Title: Re: Grover's disease
Post by: KiwiJo on Wednesday April 04, 2007, 02:16:32 PM
Hi All, I'm new here. I am a 54yo female and also have been living with Grovers disease for the past 6 months.  From all I've read, I think I developed this skin condition because I was suffering from horrendous night sweats and hot flashes (thank you menopause!) and I was just a sweaty mess a lot of the time.  The sweats have reduced significantly but now I have the fun of the terrible itch of Grovers.  Went to a dermatologist who prescribed Betamethasone Dipropionate ointment which gives me magical relief.  However, once the tube is finished, the itches come back and it is all I can do not to rip my skin to bits.  My insurance people aren't overly compassionate either and try to make me make a tube last 3 weeks which is a bit of a stretch when you have the rash from neck to knee. I have read that using this ointment for too long can be damaging to the immune system but I guess my dermatologist won't let me get to that stage.  I really hope that this disease does prove to be something that clears up within the year.  Also the warning "not to get too hot because it exacerbates the rash/itch" is a rather pointless warning when you live in Atlanta and summer is coming.
Title: Re: Grover's disease
Post by: Jimbo on Thursday April 12, 2007, 11:01:49 PM
Hi Penny,
You haven't posted in some time. I was wondering how your vitamin D treatment is going. Are you still taking it? When you were first tested, you said your vitamin D was very low. Was this a deficiency or on the low end of acceptable limits. I had mine tested recently. My doctor explained that normal was from a reading of 25 to 125. Mine was 33 which is low. Could be low vitamin D is contributing to Grover's or Grover's is contributing to low vitamin D.
Title: Re: Grover's disease
Post by: jd1 on Friday April 13, 2007, 12:25:13 AM
Hey Jimbo,

Read the first post up top and the last post on p 26.  Penny has some serious stuff going on.

I was tested for D b/c of concerns re thin bones.  My results came out almost exactly same as yours.  Interesting stuff.  J
Title: Re: Grover's disease
Post by: playagirl on Friday April 13, 2007, 02:02:30 AM
Hello All, Boy have I been through it. After going to Fla and being told I had a skin lymphoma i headed to MD Anderson in Houston. After many test, full body pet scan, lots of blood work they determined not only has it not gone into other parts of my body but my body is healing its self. They don't know if the Vit D has anything to do with it but it can't hurt. I'm to stay on it, 50,000iu twice a week for a while and then cut back. In 6-12 months I'm to have another cat scan and make sure lymph node haven't enlarged. After all this I'm not sure about Grovers and if I don't have it at all. My skin is looking better than it has in a very long time, whatever it is I'm liking it. When I was tested for the vit D it was 26 and I was told normal was about 48.
Title: Re: Grover's disease
Post by: mitch itch on Sunday April 15, 2007, 10:54:11 PM
KiwiJo, ask your derm if you can mix the Beta  with some Aquaphor (if it's an ointment) or Cetaphyl (if it's a cream) to make it stretch a little further.   It will probably be just as effective. 

Quick update on me---my narrow band UVB light treatments are helping whatever it is I have, tho' I still get a small breakout or two every day or so.   Nothing like it was, however, so I'm pleased plus I have a nice tan now with an interesting tan line  ::)  since I have to wear a thong during the treatments.   

My derm had me take a fully submerged soaking in warm water every morning for 20 minutes and then apply Aquaphor right after and in the afternoon a coating of Vanicream.  Made my skin smooth as a peach covered bannister.  Did that for a week.   Now I just use Cetaphyl or Aquaphor after a shower (limited use of soap) in the am and the Vanicream in the pm.
Title: Re: Grover's disease
Post by: KiwiJo on Monday April 16, 2007, 01:25:02 AM
Ok, here I'm going to air my ignorance.  What is the difference between an ointment and a cream?  and what are Aquaphor and Cetaphyl.  Are they OTC or prescription?  I have had the Beta in both tube form (says cream on tube) and  lotion form (isn't as effective as the cream but I got the itches in my hair so needed something other than cream for that.
Title: Re: Grover's disease
Post by: jd1 on Monday April 16, 2007, 05:40:52 PM
Penny, very glad to hear of your good news.  Sounds really really scary.  I am glad to hear that you are doing better. 
Title: Re: Grover's disease
Post by: jd1 on Tuesday April 17, 2007, 02:07:08 AM
Hi everyone, There is someone I spoke w/ this morning from Dr Weil's website - her name on that site is Lucky Mom.  I told her about Dr Dantzig's research.  She had a lot of questions, and I told her that I didn't want to retype a year's worth of posts, gave her the link here, and suggested that she start reading from p 13.  I told her that I would meet her over here, but I am going off-line tomorrow for at least a week, maybe two.  I have been working a ton and need to rest and detox from this computer.  I trust others will step in to answer questions etc.  Bye.
Title: Re: Grover's disease
Post by: NickNak on Thursday April 26, 2007, 09:10:25 PM
Greetings,

I notice many of you discourage the use of Topical corticosteroids to treat flared up lesions due to the potential side effects however what about the newish steroid-free medications now available.  I'm talking about topical immunomodulators (TIMs).  There are two, pimecrolimus and tacrolimus which seems like a good alternatives.  When applied topically in a cream ointment, these therapies apparently produce powerful anti-inflammatory effects on the skin without interfering with the body’s immune system.  Has anyone tried these.  I used "potent" corticosteroids (elecon 1%) for a few weeks but got scared off them by my sister and this forum.  Now I'm just using over the counter emollient (AB Q10 Plus).

NikNak
Title: Re: Grover's disease
Post by: jd1 on Wednesday May 09, 2007, 04:20:55 PM
Hi NikNak, I used one of those for some time, it did nothing.  Have you tried them?  Any success?
Title: Re: Grover's disease
Post by: M@t on Wednesday May 09, 2007, 04:24:40 PM
Welcome back jd1

Do you feel better after your break?

Matt
Title: Re: Grover's disease
Post by: jd1 on Thursday May 10, 2007, 05:01:18 PM
Hi Matt, yes, thank you I am somewhat sane again.  Unlike your picture which completely cracked me up.  Thank you for the laugh. 
Title: Re: Grover's disease
Post by: Figment on Monday June 04, 2007, 09:56:26 PM
Hi. I just found this forum by accident following a dermatology appointment where the dr. suggest I go home and "google Grover's Disease." I haven't been officially diagnosed because I've been using Protopic ointment and currently the rash is diminished. I developed this rash 10 years ago, following a hospital stay after delivering my second child. I don't fit the profile, I was 29 years old, female. For the last 10 years my dermatologist (different from the recent visit) just called it atopic dermatitis and gave me Protopic ointment. It really burns the first couple of days but then subsides after that. It's a nasty product though as it's like applying vaseline. I have been skimming through the posts on this forum and it looks like a couple of others developed this following hospital stays. Wonder if there's a connection. I also notice that oral prednisone will completely clear it up for a few days until I stop taking it, when it returns rapidly. It started only on the chest, has progressed to belly area, back, and now neck.

I do have amalgam fillings, and have had a couple of root canals too. Am interested in the connection with mercury exposure. This rash coincided with my hypothyroidism diagnosis, following delivering an RH sensitized baby. Wonder if that auto-immune connection sparked it all.
Thanks for listening.
Title: Re: Grover's disease
Post by: Sundowner on Wednesday June 06, 2007, 06:19:36 PM
Hi Figment.  Just a short note to let you know we're out here.  The board has been slow lately, but some of the true veterans of Grover's might jump in now and then (jd1, mepen, joe, jimbo, etc).  If you suspect Grover's, you need it biopsied before you get too far along.  Start around page 13 of the forum to see the early discussions of mercury and Dr. Dantzig's research.  It's the best explanation for what causes Grover's.  About a half dozen of us have tried mercury chelation with Chemet, but with mixed and varied success.  Read the entire forum though because there is also info on what things help control the symptoms, don't help, etc.  I think we all have learned that steroids are not the answer--improves things for a while, then it comes back worse when you're off the stuff.  That's enough for now, but we know what you're going through.  Keep in touch.  Sharing info on this board helps everyone.

Chuck   
Title: Re: Grover's disease
Post by: jd1 on Wednesday June 13, 2007, 01:35:17 AM
Hi all,

I have shared at length my experience on Chemet and the relief of not having to deal with this disease on a daily basis.  I am now sharing the relapse....I flared badly in March, didn't address it until mid-April.  Because of my tendency towards the neutropenia, I can only be on Chemet for one week at a time...then must take a 3 week break.  It doesn't seem to be enough to keep up.  The front of me, where this disease started, is just fine - some lesions on my tummy, but they are small and I don't feel them.  My back is a mess.  I am so bummed.  I asked Joe how he was doing, and he is much better and on low dose Chemet on a daily basis.  This is not an option for me because I guess I have to admit that having white blood cells is more important than not flaring.  My derm is referring me to UCSF, but I am not hopeful.  It blows my mind that for everything that I have done to control Hg exposure, my body does not seem to be able to keep up, and that shows on my skin.
Title: Re: Grover's disease
Post by: platypus on Friday July 13, 2007, 04:01:15 PM
FWIW, I got back blood results today on my HG levels - came back with a reading of "10  (<=10)".  The test before that was 18 months ago and that came back at "5 (<=10)".  So who knows what it really is.  I explained to my MD that the test needed to be fine grained, but they didn't seem to do that. The Lab was "Quest Diagnostics/NicholsInstitute".  I'll see if I can get any more detail.  My Grover's is pretty clear right now (summer). Planning on having one filing removed soon, using careful extraction procedures, and seeing if I get an outbreak or not.
Title: Re: Grover's disease
Post by: anndrew on Tuesday July 17, 2007, 09:27:59 PM
So I am new to this board but I can not tell you how much it helped me to read about other people having the same issue. This year has been nothing short of a living hell. I have had grover's since Aug and clearly it has changed my life.  Not fun.  I would like to know- I used to run half marathons-has anyone fully recovered and gotten their life back?  Running was my way of keeping my stress at bay.

One other question- my scalp is driving me nuts but isn't broken out.  It really itches bad is that part of Grover's?

I am actually set to see Dr Dantzig in two days-I have never been to NY but it will be worth every penny if he helps!


Thanks  Drew
Title: Re: Grover's disease
Post by: anndrew on Wednesday July 18, 2007, 01:40:41 AM
OK, I am a little down over the last year, is there anyone in the world that had this for a year and then returned to his old self.  FYI I do realize that this has been a year of learning but I am ready for the lesson to be over.

I have been working on getting the mercury out of my system for about a month-using something called heavy Detox ( dmsa) and it does seem like its starting to work.  I have also been supplementing with msn, garlic, cilantro and vitamin c.  In addition my derm has me on an antibiotic. 

My legs were always dry this year till I found aveeno skin relief moisturizing cream wonder if my antihistime is making me dry?

How does everyone stay positive and focused?

Drew
Title: Re: Grover's disease
Post by: jd1 on Wednesday July 18, 2007, 04:35:25 PM
Drew,

Do you really feel that this disease has changed your life?  One of the earliest posts is where someone told me not to sweat...and I said no way.  Exercise is also a major way that I deal with stress, and flaring has never stopped me.  After the flare from the sweat and hot shower, my skin was absolutely awful, but it would calm down to its normal yucky state after a couple of hours. 

Will life ever go back to "normal", ie carefree in the sun and eating tons of tuna?  Not for me.  But the last year has been amazing, notwithstanding the returning itchy back.  More importantly, even before finding relief with Chemet, as awful as this disease can be, and as obsessed as I've become, life is still really good...there are still children to care for, relationships to love, work to be done, rest to be enjoyed.  Has your disease changed your life that much?

You are lucky that you get to meet Dr. Dantzig.  Please let us know how your appt goes.  Jessica
Title: Re: Grover's disease
Post by: grantsoo on Thursday July 19, 2007, 11:32:34 AM
So I am new to this board ..
One other question- my scalp is driving me nuts but isn't broken out.  It really itches bad is that part of Grover's?...
Thanks  Drew

Yes, my scalp drives me nuts too.  I use a Betamethasone lotion when I can't stand it anymore.  It does help.  I don't use it any more than I have to because of the cortisone link to my eye disease - CSR.
Title: Re: Grover's disease
Post by: anndrew on Saturday July 21, 2007, 12:42:22 AM
Jessica,
My appointment went well, Dr Dantzig seemed intelligent, kind and caring.  New York was the friendliest town I have ever been it- seriously.   I will try the chemet starting Monday, just got home and my Walgreen's doesn't carry it.  I do feel good about this, although Dr Dantzig did tell me he had no clue about my scalp ( we are going to try some steroid on it). 
I stop at a friends house who is training for a marathon- we used to do long runs together on Sunday's are right I need to start running again matter what.  How long were you on Chemet?  Do you flare now after you run?  Anything help?  I wonder about swimming-any thoughts?

This has changed my life- cost me two relationships with two wonderful women's its just me now..  Trust me Grover's is not helpful to a love life-but I guess I needed a time out to focus elsewhere.  Strange I read Tony Dungy's new book the other day-its really good about changes. This Grover's turned me from an extrovert to an introvert and somehow I need to reverse that!
My local derm has me on a antibiotic, Dr Dantzig said no reason for it.  When I started taking it it did help somewhat-does anyone have any experience with Grover's and antibiotics.

I know Mercury is in seafood and I don't have any in my mouth, what else do I need to avoid? 

DD





Title: Re: Grover's disease
Post by: gcoop on Saturday July 21, 2007, 01:27:52 AM
My husband is 58 and is in great health (although he has had psoriasis since he was 27), he ran the New York Marathon Nov 2005 and the Portland Oregon Marathon Oct 2004. The reason I mention that is that there are very many stories from all the Grovers patients that have talked about running or exercising and the correlation between the disease and sweating and many have psoriasis. Here is a history of how the disease has hit him chronologically, and some of the steps we have taken.  During some of the running events and randomly he had a couple of small flares much like a strip of skin like 7 inches long and no more than an inch wide appear on his stomach just under the belt line, and then later a couple of months later the same kind of strip show up on his side.  Each time he went to the dermatologist and got a steroid shot and some steroid cream to control it.  Both times they went away. October 1, 2006 my husband had a bad flare up of Grovers on the skin on his trunk, both front and back. It stayed bad and very intense for six weeks. During this time he went to the dermatologist and had two biopsies taken and was diagnosed with Grovers Disease. This flare took until after January 1, 2007 to settle down.  It was mostly on his trunk, but also affected his scalp and was on his buttocks, and groin area. Later after the flares subsided at times he would have a small breakout on the inside of his legs, but at this time it was controllable with the Triamcinolone Acetonide Cream USP .1% this cream help mostly for the itching and seemed to keep the disease from flaring. Even though the flares were easing up the rash was still around every where that I mentioned but in much smaller and less intense, the itching continued, so the dermatologist suggested Accutane, so on 2/01/2007 my husband start taking Accutane and his skin progressively improved, by 4/15/2007 he decided to stop taking Accutane because of the side effects that he had dry lips, bloating, some diarrhea etc etc and his skin was at a controllable level. The disease has continued in this kind of semi-dormant stage, and he continues to use the Triamcinolone Acetonide Cream USP .1% cream just before bedtime each night, helps the itching, when it aggravates in the evening. He has just recently started running again because he misses it also, so we will post and let you know if the Grover's gets worse or not. His dermatologist does not think it is connected to mercury, but we think it is certainly possible.
Title: Re: Grover's disease
Post by: jd1 on Saturday July 21, 2007, 02:09:40 AM
Hi Drew.  First derm gave me an antibiotic, which did nothing but give me a yeast infection.  I went off and on Chemet in 2 week cycles for about a year - a lot longer than Dr Dantzig's protocol, but after researching Hg and where it hides in the body and the treatment for the autistic kids, I decided to stay on longer. 

I am not sure how much you have read and I don't want to repeat myself so much...I have posted extensively....I don't swim b/c chlorine and my skin don't get along.  I do 45 min on the aerobic equipment at the gym and some weight lifting.  The Chemet helped right away, and I rarely flare now after exercising.  I have to exercise.  I can't imagine living in my head and in my body without it.  That said, maybe my Grover's, although persistent, isn't as bad as someone else's, so I don't want to judge other people's decisions.  I can't believe that two of your relationships have been impacted by Grover's.  That's terrible. 

Where is mercury in this world.... I think it is everywhere.  Recently the WSJ did an article about Hg in the crops in China - the plants are poisoned b/c of the pollution from a nearby factory raining onto the dirt, which becomes part of the plant.  The people in the region are sick from heavy metal poisoning.  Another person on this board told me that they found Hg in the water where she lives on the East Coast...and finally figured out that it was blowing over from the coal plants in the midwest.  The SF newspaper just had an article in yesterday's paper regarding a clean up plan for the San Francisco Bay....over the next 70 years!  Yet if I read it correctly, even the environmentalists were pleased w/ the plan - it's only going to take 1 generation, not several.  The Hg is poisoning the fish, and the birds eat the fish, so they are poisoned too.  It used to be in fertilizers that were used on the crops, so presumably it's still in the dirt.  And based upon the article about China, getting into our plants.  I think I've read that it's in halogen lightbulbs, older thermometers, some small part in cars that gets recycled.  The WSJ did a piece a while ago on the car part.  They followed it from when the mechanic pulls it out of the car, to the recycling center, and on and on and somehow got back to Boliva, where Hg is burned as part of the mining operations, and it circles the Earth up to 4 times before it rains down on us.  I may be remembering some of these details incorrectly - it's been a while.  Point is that we eat it, breathe it, drink it, absorb it.  The more I read, the more I feel certain that it is everywhere.

Please post back how you do.  I hope this works for you.

gcoop, welcome.  Is the derm ok with your husband using the steroid cream every night long-term? 
Title: Re: Grover's disease
Post by: anndrew on Saturday July 21, 2007, 06:27:55 PM
FYI, Dr Dantzig gave me a product called Olux for my scalp.  It is a foam.  I tried some last night-we will see.

I hate to ask so many questions but I think I may have finally found a group that collectively might have the answers.  So people have suggested that I get an ifrared sauna, anyone have any thoughts?  DD
Title: Re: Grover's disease
Post by: anndrew on Sunday July 22, 2007, 04:54:15 PM
Ok- I know that I am full of questions.  I have Grover's on my trunk and no other marks anyplace on my body.  My legs itch from the bottom of my feet to 3/4 of the way up.  My scalp also itches.  Would this all be tied to Grover's?

I greatly appreciate anyones input.

Drew
Title: Re: Grover's disease
Post by: anndrew on Tuesday July 24, 2007, 01:49:44 PM
OK one more general question. My derm put me on a strong antihistamine, 180 mg of fexofenadine at night and 120 during the day.  I noticed that my skin and scalp actually feel more dry when I am taking it-could that be drying out my skin? 
thanks for your help
drew
Title: Re: Grover's disease
Post by: mpt on Monday July 30, 2007, 08:45:45 PM
Hi,

Can anyone here point me to a physician with expertise (or even just experience) treating Grover's, in the Los Angeles/Riverside/Orange/San Bernardino County area?

Thanks a bunch.

Michael
email address removed
Title: Re: Grover's disease
Post by: anndrew on Thursday August 02, 2007, 03:27:36 PM
No matter what doc you end up with or what he says,  get rid of your mercury.  Chemet works great and Dr mercoloa has another approach on his web site.  Nothing got better till I started to get rid of my mercury.
Drew
Title: Re: Grover's disease
Post by: mepen on Friday August 03, 2007, 02:21:07 AM
Hi Everyone

I haven't posted in awhile and I notice a lot of new activity so I would like to add my two cents again. My Grover's cleared on Chemet and then I had a flare last fall that I now believe may have been attributed to a drug that I was prescribed for a short time for hot flashes (gabapentin). Since quitting the gabapentin I haven't had anymore major flares. Even during this hot/humid spring and summer season, I have been basically symptom free until about three weeks ago when I ate some seafood with fried onion rings (fried in same oil as seafood). I flared up with new lesions in new spots within a few days. Something I haven't experienced since the episode last fall. I got some Chemet and have been taking it a week and these new lesions are gone.

I took Chemet over a year ago for six months (two weeks on/two weeks off) and it helped tremendously. Besides the one episode last fall and this small episode after eating seafood, I am doing better than I have been in the last decade. My legs have freckles from the lesions but the skin is smooth to the touch. This is a miracle when I think about it because my legs felt warty for over ten years. There is definitely some correlation between the mercury and skin and Grover's. Dantzig may not have hit the bullseye with the Chemet but the darts he is throwing are hitting the board. Chelating mercury with the Chemet has worked better than any other drug I ever tried (and those drugs are: topical steroids, Dovonex, Tazorac, and oral Accutane).

Title: Re: Grover's disease
Post by: mitch itch on Saturday August 04, 2007, 12:46:23 AM
Have any of you with Grover's tried narrow band UVB light treatments?   I'm curious only because the treatments (since January) have had a remarkably positive effect on my undiagnosed skin ailment.   (Burning red spots over most of my body for 2 years).   Where I use to have 15 to 20 spots a day with intense burning sensation, I now have at the most 3 or 4 a week and they are mild.   Plus I have a really sexy (well, my wife thinks so anyway) thong tan line. ;D
Title: Re: Grover's disease
Post by: anndrew on Sunday August 05, 2007, 04:54:27 PM
I had a doctor relate Celiac  disease to Grover's and both to mercury.  Has anyone else ever heard of this?
Drew
Title: Re: Grover's disease
Post by: jack G on Tuesday August 07, 2007, 12:45:57 AM
Hello everyone,
It's about 6 months since I had my 3 analgams and the cavities below them out, along with 4 teeth and one root canal.  My health has continued to improve.

I reported last time good results with Chlorella and some other detoxing agent seemed working for a while as well, but in time they sometimes left me with the hint of a headache - not like before, but not what I wanted to put up with from a detoxing agent.  I decided it probably related to detoxing at an unsustainable rate.

I found something much better - a slow detoxer that is natural to our own bodies and that is quite healthful.  I was already free of most symptoms but now I even eat shrimp with no or very minimal effects in the way red pimple breakouts.  I'm virtually never stiff anymore either though I work days on end shoveling, pruning, weeding, and hauling in my garden.

It's called glutathione and its our own most important antioxident that is made right in our own livers.  Everyone should go online and do some investigating.  I believe many of you will be helped maybe even cured.

There are several ways to boost your levels.  Over time I hope to remove 40 to 50 years of my previous amalgam polution from the storage areas in my body.  My technique is to take undenatured whey protein powder - look online, there are many sources.  I use one from Atlanta.  Take it first thing in the morning, a half hour before any other food and once more between lunch and dinner at least a half hour before any other food and at least two hours after a meal.  Cysteine is the amino acid in the protein powder that stimulates the liver to boost your levels.  I also take the cysteine (NAC) as a supplement after dinner with alpha lipoic acid as an additional booster.

Let me know how it goes if any of you try it.

Best to everyone,

Jack G
Title: Re: Grover's disease
Post by: anndrew on Tuesday August 07, 2007, 06:17:46 PM
http://www.spezialklinik-neukirchen.de/
I have been told that this is the best place in the world for skin conditions- anybody ever go or hear about it?  Drew
Title: Re: Grover's disease
Post by: JoeM on Thursday August 09, 2007, 02:12:30 AM
Hello Everyone,

I am glad to see that we continue to be a support for people who continue to suffer from Grover's. It has been awhile since I have posted. Hello, Jimbo,JD and Mepen, thanks for your updates. Just a quick update on myself, I remain on a very low dosage of the chement. I took a 3 week break back in June and went back on in July. I have a 10% co-pay now and at $700.00 a bottle it can get pretty expensive.

For the new people who have posted, I believe in the chemet. I was origanlly diagnosed with Grover's at age 30 (I just turned 40). It was pretty mild until about a year and half ago. To make a long story short, I finally went to see Dr. Dantzig and been on and off the chemet ever since. There aren't any consistencies with the disease; what works for one might not work for for another. We all have experimented with many creams, lotions and pills.

Andrew, I can tell you that I am a fitness fanatic and the dowsing my torso with talc really helps to absorb the sweat and helps with reducing break-outs. I actually do not break out much in the summer. The cold winter air is my enemy when it comes to grover's. I seem to have more of a problem now in the winter. Andrew, you had not metioned your age and if your are like the rest of us who had baked themselves in the sun in their younger years. This seems to be a common thread with grovers.

I do not think at this point I will ever be cured, I just glad at this point I seem to have it under control. If I get a new lesion every 2 weeks that last for a week, I can live with that. Also, at first I am in agreement with Andrew it did change my life. For someone who is single and who is really into taking care of their body, this could be devistating. I guess over the years you adjust and what was important becomes less important. There are a hell of alot worse diseases and disorders to have.

Keep posting everyone...it was great support for me when I was down and out. Enjoy the rest of the summer.
Title: Re: Grover's disease
Post by: Jomac on Friday August 10, 2007, 09:14:43 AM
Hi,

This is the first time I've posted on this site although I have been reading from page 11 onwards since I was diagnosed with Grovers disease back in April this year.  Firstly, I want to thank everyone for their contributions as it has been a huge help just knowing there are others out there and I am not the only female with a predominately male skin disorder.

I live in Australia and I am a 45years young and have been pretty healthy throughout my life until November (summer) last year when this horrible rash appeared and I couldn't stop scratching.  It mainly appeared on my trunk but then spread down my legs, arms, shoulders and scalp.  I was fortunate that I was recommended to a very good dermatologist who pretty quickly diagnosed me with Grovers Disease after testing a sample of my skin and taking blood tests.  I have been taking numerous vitamins and coating myself with vitamin E cream which has helped.  Prior to being diagnosed, I did do the UV treatment 3 times a week for 6 weeks but it did nothing for me.

As a child I did spend a bit of time in the sun and had also lived in Western Australia for a number of years.  Although, I have never really sunbaked.  Yes, I have Amalgam fillings and will have these removed once I find a suitable dentist...thanks for your earlier advice on this.

What caught my interest though is an earlier message from Drew.  Because of some of the symptoms I have been experiencing ie.feeling blotted and then having diarrhoea after eating or drinking, lack of energy etc. he believes the trigger for me could be that I also have Celiac disease.  Apparently 1 in 200 people have Celiac disease but are not aware of it and unfortunately if left undiagnosed can in some cases cause bowel cancer...something my father died of many years ago.  I'm sure you are probably aware that the skin and bowel are very closely aligned.  Although my dermotolgist did say to me that he believes that what may trigger Grovers in one person may not necessarily be the same trigger for someone else, making it even more difficult to cure. 

Anyway Drew, I have an appointment with a gastroenterologist at the end of August and will let you know the outcome.  All the best...Jo
Title: Re: Grover's disease
Post by: bunnie on Friday August 10, 2007, 11:28:34 AM
Hello Jomac and welcome to Skincell!I saw you were on line but I couldn't type this fast enough, and I wanted to make sure what I was saying was correct. I am not certain that Grovers is an autoimmune condition, as it seems to be transient and seasonal? Grovers  is called Transient Acantholytic Dermatosis.
Acantholysis is a disruption of the intercellular connections between keratinocytes of the epidermis, caused by lysis (destruction) of intercellular cement substance, resulting in secondary disruption of desmosomes (which is a type of structure which joins one cell to another) and often in a defined sequence of cellular degenerative ( growing steadily less healthy over time) events.

I understand from reading that it is a possibility that a person may have a genetic predisposition to this , but as yet there is no established cause or "trigger", in fact the etiology is unknown. It does seem to affect more men but there are cases of children having it.

Coeliac disease is often also present in people who also have a skin disease. Coeliacs is considered to be an autoimmune disorder, although as yet it is not absolutely determined, but it is very highly likely that it is. An autoimmune reaction occurs of and by self, that is what auto (Greek = self) means.
This autoimmune reaction can be idiopathic (no reason), stimulated by certain drugs, (which alter normal cell processes, thereby producing autoantibodies to self proteins) or as is hypothesised,by coeliac disease (a gluten enteropathy=disease of the intestine ) or immunological abnormalities found in ulcerative colitis.
In cases of these bowel disorders there is a dysfunction of the transepithelial Iga antibody (found in secretory body fluids eg saliva, tears, and in the gut.) which come into contact with outside the body , (non-self factors.) There is an increase in secretion of this antibody by Bcells found in the bowel lining (or mucosa)in ulcerative colitis conditions.

A similar process occurs in coeliacs but it is an allergy to gluten (gliadin)which can stimulate alterations in antigen processing, and therefore the production of autoantibody, but only in people who are predisposed to autoimmune conditions.
Again it is hypothesised (by no means proven) that immunological abnormalities in UC may reflect an alteration in antigen processing, and therefore the production of abnormal (autoantibody) to the altered antigens, by the gut, which could be relevant to the development of certain skin conditions. However if the latter does eventually prove to be the case in an individual,then both gut condition and the autoimmune skin condition will be identified by biopsy in the person.

There is no cure for autoimmunity, diet may relieve an inflamed gut, and maybe lesions  from the autoimmune reaction, although there is very little evidence that it does) but it will not have any affect on the autoimmune conditions themselves. Autoimmunity only occurs in people who are genetically predisposed to this phenomena, you can have more than one autoimmune condition, and all that can be done to allieviate the symptoms is to suppress the immune system. Unfortunately, these drugs are incapable of pin pointing the exact autoantibody responsible, and therefore suppress all of the immune system.
Although I realise that Grovers may not be an autoimmune condition at all, I have explained this to show you the only way coeliacs would have a bearing on skin disease.
Bunnie
Title: Re: Grover's disease
Post by: anndrew on Saturday August 11, 2007, 03:06:48 AM
Joe- I guess I forget to mention it- I am a 42 year old guy who was a lifeguard for several years ( fun years ).  I have had three Basel cell cancers cut out-so call me sun damaged.  Besides that i was the picture of health-half marathons, weight lifting, beach volleyball (indoor beach) and a great diet full of seafood.. I call myself the Shaquile O'Neil of sweating. 

I have been searching for answers to this year's may not find all of them but it is good to know that i am not alone.  I emailed Johnathan Campell about Grover's and he suggested that Grover's appears to be "highly correlated with celiac or other inflammatory bowel and intestine disease. This means that the first approach to the disease is to try a casein-free, gluten-free (CFGF) diet: no dairy products and no wheat products whatsoever, for about a month or two, and see if that helps." I got his response a week or two ago and was surprised because I never heard that.  Has anyone tried that diet? It looks tough but I know that I can give up anything if it helps this.

this morning I had an appointment with Dr Dantzig to discuss my scalp-drives me crazy!  We are going to try some prednisone.  I am not thrilled by that but who is kidding who-I will try almost anything!
He does seem to know his stuff- not that you can't get rid of mercury on your own.  My only complaint is he kind of gave me an umbrella and then his nurse informed him that it was hers-strange but after an eight block walk back to the hotel the scalp felt great-whatever works!

FYI- I am running again-nothing wrong with being an inshape guy who itches -)

Keep looking for answers! If we can put a man on the moon!
drew
Title: Re: Grover's disease
Post by: anndrew on Saturday August 11, 2007, 04:16:51 AM
A quick question- does anybody itch where they aren't broken out besides me? 
drew
Title: Re: Grover's disease
Post by: jd1 on Sunday August 12, 2007, 02:02:06 AM
Drew, I am, therefore I itch.  But I'm not sure that's it's all Grover's.  I think some of it is just my type of skin.
Jimbo did a pretty intense elimination diet.  He posted about it on the earlier pages.  I don't think it did anything for him.
You said, "not that you can't get rid of mercury on your own".  Maybe, maybe not.  Having done tons of reading, I personally believe that the body on its own won't get rid of half a lifetime's accumulation of Hg.

Bunnie, you know a lot more than I do - you lost me in the details of your post.  But 2 other Grover's sufferers have told me that their docs told them that there was an autoimmune component.

Andy Cutler mentions celiac disease in his book on Hg toxicity on p 103 or 104 - it's just a mention, he doesn't say much about it.

Joe and Mepen, we haven't talked in ages.  You both sound great!  I am so happy for you!

Jack G, Andy Cutler (again) discusses glutathione in his book, and I think he said stuff about it being difficult to absorb and produce....I am curious, have you had measurements of glutathione levels before and after supplementation?

And Mitch Itch, hello, you are the original finder of Dr Dantzig's research, thank you again....you asked the question, and so I must tell you that my first derm absolutely shut down that line of treatment.  She said that it increases the risk of skin cancers etc.  I am glad though that it is giving you some relief.
Title: Re: Grover's disease
Post by: bunnie on Sunday August 12, 2007, 12:35:21 PM
Quote
But 2 other Grover's sufferers have told me that their docs told them that there was an autoimmune component.

Yes,I understood that it may be, and I'm glad that 2 docs seem to confirm this. That is why I posted.
Its a pity my post wasn't clear, I think people are put off by the names of things like antibody or antigen. They sound complicated but in fact what I am explaining is very simple. Take a look at the autoimmune articles thread There is a good link on there that explains exactly what is happening concerning autoimmune disease.
Forget trying to stop the disease by what you eat and all the rest it has absolutely nothing to do with it. You cannot prevent it, or cure it.
You are genetically predisposed to having an autoimmune disease, and unless this abnormality in your genetic profile can be blocked permenantly, (which it can't) or altered, or removed by drugs or whatever, (which it can't as yet) then there it will remain. It is how you are made. All that can be done is to suppress it.
For reasons (as yet unknown) these conditions wax and wane in severity and also have periods of remission. There is no "pattern" to this, so one cannot prevent it. All that can be done is to suppress the autoimmune reaction, which occurs of and by self. There is the hypothesis that possibly a dysfunction of the antibody (molecules which fight or destroy infection) found in gut disease, may cause the normal process (immune reaction) to also dysfunction , thereby stimulating the autoimmune reaction instead; But for this to happen you are already genetically predisposed to it ever happening, from your birth.
All of us who have an autoimmune mediated disease come under the same umbrella. The diseases are differentiated because the abnormal antibody produced by this response may be IGA, IGG, IGM,IGD, IGE, and they target certain areas of the body. Autoimmunity is a condition you are born with, and it is stimulated in such circumstances as I have mentioned in my previous post. The result from this response from this stimulation,  is the production of abnormal antibodies ( think of  normal antibodies as soldiers in an army defending their territory, (organs and tissues of the body) killing off any invaders, but these auto=self soldiers, :laugh: (abnormal antibodies ) see the enemy as people in their own territory, ie:- self, such as organs and body tissue/skin.
Take a look on the Liga bullous dermatosis thread in recent posts , it mentions and explains the process on there.
Does that make it more understandable? I do hope so!
Here's a link, the best I know of and one I have saved on my pc. It is a fascinating subject, our body's own computer in a sense, the blood too is fascinating. This is the information you need to understand so that you can make well informed decisions on the only medical treatment available at present. Do not mix alternative medicine with scientific meds, because sometimes certain vits. can alter how the drugs for these conditions work, and therefore when your specialist checks you out he cannot get a true picture of how well or not the drugs are working. No foodstuff can alter or stop the production of these abnormal antibodies (Autoantibodies)-period.
http://www.niaid.nih.gov/publications/immune/the_immune_system.pdf

Bunnie
Title: Re: Grover's disease
Post by: anndrew on Sunday August 12, 2007, 05:00:27 PM
JDi1,
Have you ever checked you environment?  Things can take years to build up and years to flush out of your system-I would move just because.  I also think a lot of my itch had nothing to do with Grover's-scalp and legs????  Most derms see sun damange and send you away or they discover Grover's give you some meds and say good luck maybe if will clear-they don't seem to care about the rest of you.  The easiest most direct thing that get you out of their office.

Sorry- I didn't express myself well about the mercury- you can get rid of mercury without Dr Dantzig.  I am under his care and on Chemet but for a month before that I was working with my holistic guy detoxing mercury.  If I had Grover's i would get rid of mercury ( one way or another )mercury is nothing but bad for humans getting rid of it wont make you sick.  Clearly this chat board is an indication that a lot of people clear after detoxing mercury.

You can check Dr mercola, or Dr Gordon's websites and get started.  Or you can fly to NY and talk to Dr Dantzig.  Either way detox the mercury-FYI mercury had also been link to several autoimmune diseases. 
I am clearly not a doctor but if my doctor said I should live with any level of mercury I would get another doctor! 
Title: Re: Grover's disease
Post by: jd1 on Monday August 13, 2007, 08:33:39 PM
"Forget trying to stop the disease by what you eat and all the rest it has absolutely nothing to do with it. You cannot prevent it, or cure it."

Bunnie, not sure I agree with that.  If Grover's has an autoimmune component - and it is a big "if" (the best definition I've seen of a cause of Grover's comes from Dr. Dantzig and his explanation of the impact of Hg) then who is to say that there is no way to prevent the autoimmune reaction?  There are tons of anecdotal stories online about people greatly reducing or causing remission of their Lupus and other autoimmune diseases by taking certain action....and interestingly, reducing the body's burden of Hg is something that I've read about a lot as people try to deal with and understand their diseases.  I personally believe that I am more inclined towards an autoimmune disease than the average person - I have previously posted that my ANA has been measured as high as 5,000 +.  And the rheumatologist told me that it would always be positive.  And coincidently, after chelating for a few months, it tested negative.  ANA is only one measure of whether someone has an autoimmune disease, but I can tell you that when I tell doctors that I have tested that high, I always get a concerned reaction.

Also, there was another woman who used to post here who had fabulous success clearing her Grover's by drastically changing her diet and taking Chinese herbs recommended by her acupuncturist.  Is she cured?  Perhaps not, I don't know, but the last time I heard, she was certainly managing the disease very well. 

Andrew, thanks for your comments.  I have cleaned up my environment as much as possible.  And I have been detoxing under various protocols, mainly Dr. Dantzig's, for about 1 1/2 years now.  And I also wouldn't hold much faith in a doc that told me that it was ok to be Hg toxic.

Title: Re: Grover's disease
Post by: bunnie on Monday August 13, 2007, 10:12:56 PM
Quote
Bunnie, not sure I agree with that.  If Grover's has an autoimmune component - and it is a big "if" (the best definition I've seen of a cause of Grover's comes from Dr. Dantzig and his explanation of the impact of Hg) then who is to say that there is no way to prevent the autoimmune reaction? 

Quote
If Grover's has an autoimmune component
It either is autoimmune or it isn't. It can't be partly autoimmune. Can you show me the quote that that sentence is in?
 We will just have to agree to disagree. The scientific facts concerning autoimmune disease are available for all to see. Read any article by medical scientist researchers into autoimmunity and they make it absolutely clear. You cannot prevent the autoimmune reaction. You are genetically predisposed to autoimmune disease, you can have one or more entirely different autoimmune diseases yourself or someone else in your family may have yet another different one. You cannot cure an autoimmune disease, they usually "burn out" in later years of life. It isn't a case of "who is to say there is no way to prevent the autoimmune reaction", it is a scientific medical fact that you can't. Read about autoimmunity and immunity the body's defence system, and you will understand. It is a fascinating subject.
Bunnie
Title: Re: Grover's disease
Post by: jd1 on Tuesday August 14, 2007, 12:43:35 AM
Bunny, yes, we can just agree to disagree.  In my mind, scientific medical fact is relative - what they know changes as they learn more and more, and what is a scientific medical fact now may not be tomorrow.  I have experienced that just dealing with doctors and Grover's as recently as a couple of months ago at UCSF - a well regarded medical institution.  And I absolutely do not discount anecdotal experience.  I am part of anecdotal experience, and much of the time I spend posting here is to give Grover's sufferers encouragement to find their own truth re the disease when the docs start spouting off with what they think they know for sure, discounting the Hg connection.  Best wishes.
Title: Re: Grover's disease
Post by: jack G on Tuesday August 14, 2007, 01:08:22 AM
Hi jd1,
Glutathione cannot be taken as a supplement as your digestion will break it down.  You have to give the supplements as I suggested, to have your liver produce it.

One study looked at the increase in the blood levels of glutathione after taking whey protein powder (I recommend undenatured) and also just taking NAC (cysteine).  The blood levels increased similarly which indicates that cysteine is the one of the three amino acids that is the crucial link.  Apparently the liver has no problem finding the glutamic acid and the other one - I forget right now, if it is simply provided the cysteine.  Asparagus and avacado are reportedly good sources of cysteine too, among a few others.

No, I have not had my blood tested, but as soon as you try it, I think you'll notice a difference in the way you feel.  And my guess is that your itching will begin to moderate before too long.

Let me know how it goes if you try it.

Jack G.
Title: Re: Grover's disease
Post by: anndrew on Tuesday August 14, 2007, 03:40:48 AM
FYI Great discussion I am learning.  Lots to learn, I do appreciate everyones input.Drew
Title: Re: Grover's disease
Post by: bunnie on Tuesday August 14, 2007, 12:34:52 PM
Apologies for very long post!
May I just say that of course I do not have this condition, but I am referring to Autoimmunity. All conditions regarded as autoimmune, come under the same umbrella of autoimmunity. As I said before it either is or it isn't.
Quote
what they know changes as they learn more and more, and what is a scientific medical fact now may not be tomorrow.
In certain areas of medical science, yes indeed, but with how the body functions for eg. the respiratory system or the digestive system, these are complete, and there can be no argument concerning the physiology of that. Even the immune system and the physiology of that is also well established. The physiology of these systems, now fully understood, are unchangeable facts.
However, Autoimmunity and the autoimmune response is as yet not fully understood, but huge strides are being made in research concerning this abnormal response, into how and why it occurs, at the cellular and molecular level. Certain facts of the physiology of autoimmunity, are already established, basic facts which cannot be changed. It is fully understood that the normal cell processes in immunity (our body's defence system) can alter in certain genetically predisposed people, thereby stimulating an autoimmune response. Autoimmune is a response stimulated of and to self.(auto= Greek=self)It's in the name! Anything prefixed by auto, means "of self". Same as anything ending in "itis" means "inflammation of" etc.
Normal Immune response occurs from non-self out of the body factors, eg. viruses,drugs, bites, inhilation of toxic fumes etc.

Autoimmunity can be idiopathic, ie: spontaneous or no reason, or drug or gliadin induced, or can occur by other cell changes in the body such as cancer, never-the-less the person has a pre-disposition to this auto response ever happening.

What is partly unknown is the cause or causes which stimulate an autoimmune response.
One factor which is hypothesised as being a possible stimulator of idiopathic autoimmunity are hormones, (self) and in some autoimmune responses for sure,   drugs and gliadin (gluten) (non-self). It is again hypothesised, that abnormal molecules found in gut diseases such as coeliacs, or ulcerative colitis, may also cause a similar malfunction of the cell process as with certain drugs or gluten. Remove the drugs or the gluten from intake and the allergy stops, but the autoimmune response which has been stimulated in this predisposed person does not. It will eventually burn out but this can take a decade or more, However if they abstain from the particular drug or gluten the autoimmune response will never happen again. (I personally have idiopathic autoimmune liga eba which went into remission for 18yrs, only to come back with a vengence, and ultimately totally blinded me, It has not left me this second time, since 1993.)
However all these known factors will only stimulate this response in a genetically predisposed person. It is even understood how these drugs or gliadin (nonself) alter how the cells react, thereby stimulating the autoimmune response. (Which I can explain see posts 1553 and 1556 on the linear iga thread) Again, the allergy to the drug or the gluten will also be present in that person, otherwise a normal immune response to that allergen would not have occured in the first place. (If there is no allergy there is obviously no immune response )
You may well argue that if a food such as gluten can alter this cell process then why couldn't some other food be a similar culprit?  The scientific fact is, that in 50years no other food of any description, has been scientifically identified as also being a culprit of stimulating autoimmunity in predisposed persons. There may be an odd case whereby a certain food has triggered an autoimmune response in that particular individual, but for it to be absolutely concrete scientific fact that a certain food or supplement is responsible, it must occur in a significant number of people, triggering the same condition,both clinically and histopathically  and over a significant number of years, such as happened in Dermititis Herpetiformis.
Think of all the foods and supplements that will have been tested in the past 50 years in individual conditions, and nothing has come forward categorically other than gluten in the food chain. Think how vast the food chain is, it could never be established unless it occured in a significant number of people throughout the world, and continuing over a number of years.
Another point in understanding autoimmunity is that it is a difficult subject unless you are a true academic, (which I am most certainly not!!) and sometimes we understand alternative medicine better, because it is easier, therefore we bother to read it and absorb it, but if you bothered to try and understand medical physiology you would understand that it is impossible to prevent or stop autoimmunity. It is how you are made. It is an abnormality, same as being born with any other physical abnormality. You cannot put those real physical abnormalities perfect again by eating food or supplements or abstinence from foods. In some instances it can be done surgically, by transplant, or replacement. A bone-marrow transplant would remove the genetic predisposition of autoimmunity, but you would most likely die either during or after the process! All cells of the immune system originate from stem cells in the bone marrow.

In Grovers disease  an ultimate  similar  malfunction process occurs as in my own condition. In Grovers there is a decrease in intercellular adhesion. I am not sure if this occurs between the epidermis and the dermis,or within the epidermis alone.In my condition however, there is total loss of adhesion between the Dermis and Epidermis. We are genetically predisposed to this malfunction being stimulated within the autoimmune response.
In Grovers ( if I understand the blurb correctly) this is thought to be caused by a loss of Syndecan-1 expression, a transmembrane heparan sulfate Proteoglycan. This Proteoglycan is a type of protein found in connective tissues, and participates in the binding and internalization of extracellular =(outside the cell) ligands,(a molecule, as an antibody, hormone, or drug, that binds to a receptor ). In this situation, an antibody.  Loss of this syndecan-1 expression, proteoglycan is evident in acantholytic (acantholysis- a breakdown of a cell layer in the epidermis,) conditions and may contribute to the decreased intercellular (inside cell) adhesion characteristic of these lesions.

You can see all these bullous type diseases listed on this link
http://www.eadv.org/content/download/doc_35409B36.pdf

The thing I have learned by having an extremely rare condition over 14years, rarely during the first decade ever being at home from hospital, is that being isolated in the sense that there was nobody to compare notes with,and that the condition not only totally blinded me, but nearly killed me twice, is that I am my only advocate. I have had nearly every immunosuppressant available, plus Chemo-agents such as the "big daddy" Interferon and IV Antibody replacement therapy (Alpha-Globin) taken from human donated blood, and to cap it all High Dose IV Methyl Prednisolone. Not nice!  I needed to be capable of conversing with my derm at his level, so that I could make well informed decisions concerning my treatment.My life depended on it, and if you read my story you will understand why. I needed to understand these processes going on in me, and I can now basically understand the process. I am no longer patronised, they tell me everything. What I don't understand , I make them explain to me exactly, and I do not leave until I do understand, or I take notes , even a dictaphone on occassions, and study it at home. I personally have been the guinea-pig for their research into my condition, therefore I have no embarrassment in asking them for anything.

If you read it slowly you will understand, don't be put off by the names of things, don't even worry about pronouncing them , it is what they stand for that is important.
Whew!
Bunnie
 
Title: Re: Grover's disease
Post by: anndrew on Tuesday August 14, 2007, 10:19:59 PM
Ok my eyes just glazed over-it may or may not be an autoimmune disease but nobody really knows,right?
Title: Re: Grover's disease
Post by: bunnie on Thursday August 16, 2007, 01:06:38 AM
Well I'm trying to help Andrew by giving information, and of course willing to learn too. You can't talk about disease and "glaze" over it.  Be thankful you have eyes to "glaze over" , I lost both of mine entirely, to autoimmune disease that affects my skin, as it does in you. It is a complicated subject, and none more so than Autoimmunity, let alone the definition of any particular disease itself .
I wasn't sure if Grovers is an autoimmune condition but JD1 said...
Quote
If Grover's has an autoimmune component - and it is a big "if"
then said
Quote
But 2 other Grover's sufferers have told me that their docs told them that there was an autoimmune component.

I don't understand what an autoimmune *component* is?
It certainly is there in the list from the link I left.
It seems people are quite prepared to learn about stuff that is irrelevant,(to me anyway, or at least not medical science) yet not prepared to learn stuff  that is! That is of course if it is an autoimmune disease.
3 things puzzle me.
Quote
Dr. Dantzig and his explanation of the impact of Hg)
I am in the process of reading about this.Maybe answers to the other questions below will emerge from that.
Quote
ANA is only one measure of whether someone has an autoimmune disease,
ANA what does that stand for? How can this measure if someone has an autoimmune disease??
Quote
not that you can't get rid of mercury on your own.
Are you saying that there is mercury in the body??
Just interested ,Thanks, Bunnie
Title: Re: Grover's disease
Post by: mepen on Thursday August 16, 2007, 03:14:49 AM
Bunnie,
ANA represents "anti-nuclear antibody." Docs can do a blood test to measure a patient's ANA titer. Very common test that docs order if an autoimmune disease is suspected. Surprised you haven't heard of ANA. Google and research.
Title: Re: Grover's disease
Post by: bunnie on Thursday August 16, 2007, 09:09:16 AM
Quote
Surprised you haven't heard of ANA.
Don't be, I have!
Quote
Docs can do a blood test to measure a patient's ANA titer.
Of course I do know that,  for some silly reason I did not associate it with that(before I posted,). I didn't unfortunately,  realise until sometime after. ::)
Here in the UK it is not something a patient would necessarily be notified about, and it would say in any case "anti nuclear antibody",  You will only be given copies of test results if you ask for them, they go straight into your hospital notes. It's different in the States and other countries, because the patient pays for medical care. We don't, at least not directly, we don't need insurance, or get bills for things like this. I have had autoimmune disease for 15 years, and I would not have heard of anti-nuclear antibody unless I had  *Googled and researched* or studied Autoimmunity. Patients certainly would not have heard about it from their docs, unless they  asked.
From what I have read so far about this Dr.Dantzig, there seems to be no argument at all concerning the cellular processes in autoimmunity, but his theory about organic mercury?? being the agent which in Grovers disease, stimulates the Autoimmune response in predisposed people. Is that correct?
Bunnie
Title: Re: Grover's disease
Post by: mepen on Thursday August 16, 2007, 07:11:26 PM
I can not speak for Dr. Dantzig (esp about what goes on at a cellular level). All I know is that chelating has helped my Grover's more than any other treatment I've tried. It is not "cured" but it is better. I have had relapses and so have other people that have chelated, but overall, the handful of us that have tried the chelation have pretty much agreed that even though we may still have flares and/or have had relapses, overall the chelation has been helpful.
Title: Re: Grover's disease
Post by: bunnie on Thursday August 16, 2007, 07:21:04 PM
I need to read more to fully understand, and of course his understanding of the physiology of autoimmunity is of medical science too, so there is no argument there. It is his theory that this substance (for want of a better word) may be the cause of the malfunction in the cell process, stimulating the disease in Grovers disease only, . It is interesting, and I will continue to read.
Title: Re: Grover's disease
Post by: anndrew on Friday August 17, 2007, 03:28:30 AM
Ok here is m question of the day, this disease is considered Transient- does anyone know anybody who had this for a period of time and then never again?  drew

FYI  I am thankful for everything I have in my life-please do not imply otherwise!
Title: Re: Grover's disease
Post by: jd1 on Friday August 17, 2007, 06:02:46 PM
Hey Jack,  Thanks for the info.  I actually have been taking NAC on dr's orders specifically to assist the body w/ glutatione production since last Oct.  I did not think to get a before and after measurement.  I wish that I had because I am curious, thus the reason I asked if you had obtained blood levels.

Drew, the very first derm that I had said that the "transient" in the name is not a very accurate description of what she has seen.  She said that in many of her Grover's patients, the disease comes and goes.  I think that most of us who post regularly here have had it relentlessly, persistently for many many years - perhaps the reason that we have spent so much time comparing experiences, trying to learn from each other and figure things out.  If you had a moderate version of this disease and it truly was transient, would you be part of this forum?  I probably never would have looked long enough to even find it.

How is the treatment going?  Are you experiencing any relief?  How long have you been on Chemet?
Title: Re: Grover's disease
Post by: anndrew on Friday August 17, 2007, 07:07:16 PM
I just wanted to hear that this "could be" transient.  I have been on Chemet for about 20 days and was detoxing mercury for about 5 weeks before with other natural products.  Things are better then they were 8 weeks ago but the last couple days things got a little worse.  I started working out again and maybe the sweating isn't helping. 
I actually read your post earlier today and realize that I am in the first inning of a 9 inning game.  I just ordered Andy Cutler's book.  I do fine this board good for info and comfort and hope that we all can gain some from each other. 
Me- my feet tingle, my scalp itches like crazy, my chest and abs are only somewhat broken out.( much better then a couple months ago) and my face and neck get very flushed often I am not as bad as somehow that I am grateful. Its been about a year of this. I think if my scalp would just relax I could easily handle that rest till the mercury gets to the ninth inning. 
Title: Re: Grover's disease
Post by: anndrew on Thursday August 23, 2007, 03:50:49 AM

I have read most of this forum and can see that a lot of people have tried to figure this out and at least gained a lot of knowledge.
I reviewed a blood test that I took last Nov when I was at my worst.  It showed that I had a huge amino acid insufficiency and a pretty big essential fatty acid insufficiency-does that make any sense to to anyone?  Anyone have the same experience?  Any clue what would cause that?

Thanks I appreciate your help
drew
Title: Re: Grover's disease
Post by: anndrew on Thursday August 23, 2007, 10:29:35 PM
Skip that last post- we did a follow up test and that wasnt the case with AA and EFA.  Drew
Title: Re: Grover's disease
Post by: anndrew on Friday August 24, 2007, 07:38:10 PM
Wow  do I post a lot.  So I just had an appointment with my local derm.  She was very interested and open to Dr Dantzig's research and was happy I was detoxing mercury.  She mentioned that a genealogy shot( one per month) would buy me three months of feeling better while I detox. 
I did just email Dr Danzig about that buy I wonder if anyone has any thoughts about that on this board.  Feeling good again and getting the mercury out almost sounds like a dream.
Drew
Title: Re: Grover's disease
Post by: mitch itch on Wednesday August 29, 2007, 10:45:27 PM
anndrew, you asked if anyone had itching without spots appearing.   That is what I often had in this undiagnosed condition I have had for 2 1/2 years.   I often knew when a spot would occur, because it would burn like crazy prior to appearance.    Several biopsies tested negative for Grovers, all the pemphigoids, etc.   That is why all the derms (on grand rounds) at a teaching hospital suggested the narrow band UVB light treatments.   Two a week for several months and now down to one per week.   I feel 99% cured and my massage therapist says he has never seen my skin look so healthy.   After showering, I apply Cetaphyl liberally also.   I see the Dean of the department next week.   If anything significant, I will post.  Mitch Itch
Title: Re: Grover's disease
Post by: microwave on Sunday September 16, 2007, 12:43:43 AM
Hi to All in Canada and Around the World,

I (Male 51) have been diagnosed with Grover's and am having no success after 1 and 1/2 months of light box 2 to 3 times a week. also the cream, (1/8% CAM and MENTHOL in TIAMOL COMPOUND) relieves the itching for 1 to 2 hours and then it starts all over again.
My body is covered from my shoulders to my ankles with lot's of red scabs and white heads ready to join them except from the belly button to the top of the groin area. some on the top of my feet as well. tried taking Vitamine C,D and E as well no difference. can anybody help me here, obviously the medical treatment isn't working. I am so ITCHY! Thanks in advance.        Peter...
Title: Re: Grover's disease
Post by: jd1 on Sunday September 16, 2007, 02:37:01 AM
Hey Peter, welcome.  Have you read previous posts?  Start reading from page 13.  Long story short, research has been published re damage to basement membrane (sun damage is common culprit) combined with Hg toxicity.  Dr. Dantzig in NY figured it out.  Read, let us know what you think.  BTW, many of us have chosen to stop the steroids.  Not helpful and lots of side effects.  Good luck.
Title: Grover's is gone
Post by: jrabbit on Sunday September 16, 2007, 12:57:06 PM
Hi All,

It's been almost 8 months since I've posted. If any of your remember...I was the gal who was going the Chinese Medicine route to deal with Grover's. Acupuncture, herbs and a VERY restricted diet. Nothing spicy, no meat, no coffee, no alcohol no nuts, no dairy, barely any fruit, no sugar etc. etc. etc.  I did the diet for a year and while it did help - I'd say about 70% better...it was not perfect. And the stress of having to eat like that was almost as bad as the disease itself.

So I finally said screw it. I'm going on acutane like my dermatologist wants me to. I just wanted to have my life back for a bit. And I can tell you I do. It's been wonderful.

I'm on a VERY low dose....like 10 mg a day....and the Grover's is totally gone and has been since January. Nothing at all. And I have been eating and drinking whatever I want, I have been exercising and sweating my guts our with no repercussions. I went through a summer where I could wear skimpy little sun-dresses without having to worry about scabs showing....I have started a new relationship where Grover's is not even a slight worry for me so I can just enjoy being with someone fully.....and basically, other than taking a small pill a day...Grover's is not part of my life anymore.

I know some of you are wary about taking acutane long term...or at all....I am too. I go for monthly blood tests to make sure my liver is ok and I see my derm once a month or so to monitor. Listen...I'm not happy about being on meds....and I do worry about what this will do to me long term....but honestly....I am just SOOOO grateful to have had this respite that frankly right now I don't care about any of that. I have no side effects from the acutane.....none at all.....expect gorgeous glowing skin.

Anyway....just thought I'd put in my 2 cents. Might not be for everyone.....but knowledge of options is always a good thing.

I wish you all luck.
Title: Re: Grover's disease
Post by: thboylston on Tuesday September 25, 2007, 09:50:14 PM
Grover's Disease:   Anyone with Grover's along with any of the following, tremors , numbness and tingling of the feet or fingers, depression, anger spurts, tiredness, memory loss, disoriented at times, blurred vision,   really has Mercury metal poisioning.   Get your mercury level checked.    There are several online companies that sell products  to do so at home too.  Mercury is the most toxic metal and is in our environment in large doses. It causes Grovers, Parkinson, Macular degeneration, ALS, Alzheimers, etc....the list goes on.
Almost any auto immune disease can be linked to metal poisoning because the body cannot rid these toxins readily, and mercury attacks the central nervous system and brain too.  YIKES!   
To permanently  get rid of mercury:  You must do oral chelation & I also suggest footbaths to go along with it. Get that mercury metal poisoning out of your body.  Get rid of amalgam metal fillings 1 by 1 by a trained dentist who knows how to remove them without making you more toxic.  Quit eating any fish or seafood of any kind.  In the meantime, do the below to calm your Grover's: it works.
See more details below for the following 3 things:
#1- Treat it like ezcema
#2-  Layer on Sarna lotion along with Triple antibiotic ointment in itching areas.     
#3-  Detox your metals.   Chelation and Footbaths
#4-  Replenish and boost immune system with good (health store  type)  vitamins 

 Ok, this looks like a lot to do, but it is all really easy stuff to do!  Don't let this overwhelm you.   I promise you will get better, and you will get use  to doing all of this quite quickly.   
This disease is basically about detoxing, and keeping away from future chemicals/toxins to tell the overactive immune system to calm down.
This is to clean out your system, get all functions back in order,  and get the immune system revived. Until you are detoxed, 
 you should treat the skin from the outside to trick the immune system from thinking it needs to attack the toxin or chemical on the skin, or the toxin trying to come out thru the skin.     
Stress, anxiety, and nerves wreak havoc on the immune system, so we need to avoid those if we can, and boost the immune system & detox systems of the body.  We can do a lot towards all of those.
IT is time to DETOX, and you might never get this flare up again if you stay away from as many chemicals & toxins
as possible in the future , do not eat fish or seafood, and do the below as much as possible. 

 

#1-  Treat it like eczema;  follow all the precautions those patients do-  no chemicals, dyes, fragances, steroids, heavy stripping soaps & shampoos,  etc…
   I would do the below for the rest of your life if you can, but certainly when skin feels dry or itchy at all.
                        1)  Tide free, or any FREE laundry detergent(no fragrance or harsh chemicals) .  No normal detergent ever.
       No dryer sheets ever, use Downy free in wash instead if need a softner.
      Wipe down your dryer several times with Windex/paper towels to get rid of coating.  Do this for a week or so until all clothes are clear.   
       Wear gloves when use cleaning products.
       Wash clothes & sheets several times to rid of other chemicals.
       Always wash new clothes a couple of times before wearing  to rid of dyes/chemicals     
                        2)  Use only dermo type soaps, Cetaphil, Purpose, Basis, Dove unscented, sparingly though, etc…
       I personally recommend Nature's Miracle soap w/emolients.   [link removed--please contact this member directly via PM if interested]  or at health food store too.   
      Never use stong soaps,  like Zest, Irish Spring, Sheid, Caress, Tone, etc..
        Use Sarna lotion when itching(morning & night w/ 3X ointment), get a pharmacy.
       but  use Nature's Miracle lotion otherwise(chemical, dye, fragrance free, steroid free)
                                 And use even dermo soaps very sparingly on general skin areas, but can use normally  on armpits and groin areas for proper cleaning
                        3)   Wash hair upside down,  do not let shampoo or conditioner run down your body. If you do baths, may add Mapo Oil to bath for hydration.
       Shampoos with multiple  ingredients including degreasers, protiens, and conditioners s/not touch skin.
                        4)   Try to keep all chemicals, dyes, fragrances off your body as much as possible
                        5)   Try not to itch, but rub gently instead, or slather on Sarna lotion when feeling itchy in  areas.  This helps break the itch/scratch cycle the body has created
                        6)  Avoid gettting too hot and heavy sweating.  Rinse off in cool bath if do so as soon as possible.  This starts the itch cycle almost always.  STAY COOL!
                        7)  Take lukewarm showers or baths, not too hot whatsover, and limit to around 5 minutes or so, but  never more than 10 minutes. 
                        8)   Avoid dust and Dust mites-  I suggest getting a good  anti allergan pillow and bed cover.  Worth it.  Dust mites and Pet dander/hair are big triggers.
                        9)  Invest in a humidifier on your air unit, and make sure to run in Winter.  Getting Dry skin increases Grover occuring.   Maintain 40% humidity in your home.
      This is good for your children too with winter allergy, sinus, breathing , and skin!   In the meantime, put a floor model in your room.  STAY MOIST!   
                        10)  Wear non-scratchy or itchy clothing & loose fitting clothes, mostly cotton.  Skin must breathe!
        I am sleeping in just cotton underwear these days.  Avoid all WOOL or scratchy type fabrics.  STAY FREE!
                        11)  Furry pets can cause major problems too.  Keep them off your beds and furniture , and vacuum very frequently to reduce effects. 

#2-  Twice a day:(REALLY IMPORTANT during flare ups)
 Put on Sarna lotion(drugstore)   topped with a thin coat of Triple antibiotic ointment(Walgreens is best price) .
Can use  SARNA thruout day anytime to avoid itching/scratching.  It  really helps.
Another person, also recommended Distilled Vinegar rubbed on  skin before the Sarna &  3X ointment, and swears by it too.
Vinegar  will not hurt you at all, since it has anti-bacterial, detoxifying properties.   It is very good for rashes.
Do the above for at least 6 weeks to see if get some clearing.  Mine did not start working till I did the above(eczema stuff) and did this lotion/ointment regimen for about 8-10 days.
 I started to get somewhat better then, but was like 50 percent better after 4  weeks.  After 6 weeks I am was almost cleared(some patches still on my stomach and back),  but I was  still slowly getting better everyday in those areas  doing this regimen.  I am not that itchy now in general.  Unless I get hot, then my stomach and back will itch some,
but I cool off ASAP and start slathering on Sarna lotion.   I should own stock in 3X antibiotic ointment and Sarna lotion.    You only have to do this regimen until your skin clears.  I am at 9 weeks now and feeling and looking so much better. 
Once a itchy area clears totally, you can discontinue this regimen in that area.  It if ever starts to flare again in that area though, start the regimen of Sarna + 3X antibiotic ointment back immediately.

Stress & Nerves exacerbate the disease-  Take down your anxiety, and calm yourself as much as possible. TAke a natural anti-anxiety type formula if needed.
 

#3 Detox:  Foot bath + Erchonia (machine is  EB-305)  -  google this. 
When you do these footbaths you detox your body tremendously.  Black flecks are pouring out of my body, a big sign of metal toxins.
 I do these at my Chiro's office.  Maybe your chiro will purchase one also.  They work for me very well .
 Chiro/Phycical Therapist/Sports Specialist  :  [doctor's name and number removed--please contact this member directly via PM if interested]
After my footbath, I do a detox bath too.  It is the only bath I do ever for like 15 minutes in  fairly warm water, not hot though.
 Google This:    [link removed--please contact this member directly via PM if interested]   to see detox bath therapies, and look at the first and second one.  You can  even combine the two.

Chelation-  google this
 It will be worth doing this thru a licensed person who specializes in this if your Grover's does not clear up dramatically in about 2 months.
 I am trying oral chelation to attract metals out of my  body naturally for now.   I might try official CHELATION later.
For now, oral chelation of metal's:  Jarrow's- Alpha Lipoic Sustain 300(w/Biotin)  &  Jarrow's N-A-C Sustain(N-Acetyl- L-cysteine) daily.   
Can get at my health food store too.
A stong metal detox agent I have not used yet is on VRP.COM ==>  see DMSA or DMSP products, they are supposed to be awesome, but should be done under the care of a  physician. 

#4- Additonal supplements:   You do not have to take all of these, but I am right now so as to get really well & support the detox of metals(B complex  A, E, along with lots of C, calcium, magnesium)   
 Calcium & magnesium(needed for all body functions, + magnesium de-stresses wonderfully-  GNLD makes a great CAL-MAG complex,
Natural Vitality Natural Calm(powder magnesium) in herbal ginger tea (get at health food store, and I love this product), a must along with Calcium. 
 A & E & C- Juice Plus to boost immune system and skin, or something from the health food store as recommended.  I would always take this product anyways. I have taken for 3 years &  have not have a sniffle, flu, cold,  or bronchitis since I started this product. It increases my energy too.
They have a kids chewable  too.
 B -12 complex for stress and energy-  I use the bilingual kind that is already coenzymated. 
Organic Fish Oils(mercury free is a must)  helps with all functions, particularly heart and skin, hair, & nails. I am  taking now since don't trust fish. 
Zinc-  take if doing foot baths, because that is a good metal that is stripped out. Plus supports stress and immune,

I have also heard repeatedly about this wonderful product for a total body detox that I am going to try:  Google this
   DR Natura-  Both the Colonix  & Toxin Out products
 But be ready for a shock.   It takes 90 days to do the total detox program, but it looks and sounds worth it .
 I am going to do it in Winter after Christmas, when I am the least busy & can focus on it & I have metal detoxed first.
  It is my New Year's resolution.
 
 This disease is debilitating, restricting, frustrating, and takes your happy spirit away!  I have cried a few times, and I have only had it for 2 months.  But I am almost all better now at approx 3 months and know I will get totally  well.  My doctor is amazed at how quickly I am getting well.  Most outbreaks last 6 months to a year.  So I am feeling blessed to have found out what it is, the cause, and how to treat it so soon.

   

Wishing you health & JOY, Tonya



Chelation
Medical use
Chelation therapy is used as a treatment for acute mercury, iron (including in cases of thalassemia), arsenic, lead, uranium, plutonium and other forms of heavy metal poisoning. The chelating agent may be administered intravenously, intramuscularly, or orally, depending on the agent and the type of poisoning.
One example of successful chelation therapy is the case of Harold McCluskey, a nuclear worker who became very badly contaminated internally with americium in 1976. He was treated with diethylene triamine pentaacetic acid (DTPA) over many years, removing 41 MBq (1.1 mCi) of americium from his body. His death, 11 years later, was from unrelated causes.
Several chelating agents are available, having different affinities for different metals. Common chelating agents include:
    Dimercaptosuccinic acid (DMSA)
    Dimercapto-propane sulfonate (DMPS)
    Alpha lipoic acid (ALA)
    Calcium disodium versante (CaNa2-EDTA)
    D-penicillamine
    Deferoxamine
    Defarasirox
    Dimercaprol (BAL)
    diethylene triamine pentaacetic acid (DTPA)
[edit] Use in alternative medicine
Alternative medicine uses chelation therapy in the treatment of heart disease,[1][2], in cases of unrecognized but claimed heavy metal poisoning,[citation needed] and in the treatment of autistic patients.
[edit] Heavy metal poisoning
Alternative practitioners claim to recognize extensive environmental exposures to heavy metals, such as through contact with treated lumber or pesticides. Many of their patients claim to have been exposed to mercury through their dental amalgam fillings. Others claim that they, or their children, have become exposed to mercury from thimerosal, an ethyl-mercury compound previously used as a preservative in vaccines. It is the nonoccupational nature of these cases which distinguishes chelation therapy in alternative practice from that in conventional medicine.[citation needed]
Today, DMSA is alternative practitioners' chelating agent of choice.[citation needed] They also make use of DMPS and ALA, as well as the conventionally obsolete lead chelating agent EDTA.[citation needed]
 
Title: Re: Grover's disease
Post by: bunnie on Wednesday September 26, 2007, 09:22:11 AM
 
Quote
Anyone with Grover's along with any of the following, tremors , numbness and tingling of the feet or fingers, depression, anger spurts, tiredness, memory loss, disoriented at times, blurred vision,   really has Mercury metal poisioning. 

Quote
Almost any auto immune disease can be linked to metal poisoning

For those of us who only believe in medical science the above is absolute rubbish, and furthermore extremely dangerous. Anyone with a serious autoimmune disease which affects the skin such as myself, would be dead if this regime had been tried. Please read up on what an autoimmune disease is, it has nothing whatsoever to do with what is stated above. I find some of those statements so ridiculous they should carry a health warning!
Bunnie
Title: Re: Grover's disease
Post by: jd1 on Wednesday September 26, 2007, 04:03:49 PM
Hey thboylston, welcome to the forum.  I can see that you have been busy!  There is one thing that you said that really concerns me, and that is that you are chelating with alpha lipoic acid right away.  You may want to check out the wealth of information provided by Autism Research Institute (2001 and 2005 position papers) and Andy Cutler.  Both discuss how ALA can cross the blood/brain barrier.  Both advocate using ALA after chelating for a while with other meds that do not cross the blood/brain barrier (they both suggest Chemet, otherwise known as DMSA).  The idea is to get the body's circulating and easy-to-reach stores of mercury down before introducing something that could potentially bind with Hg and then carry it into the brain.  In other words, the ALA that you take could be binding with Hg in your blood, skin, and other easy-to-reach places and transporting and depositing it in your brain, clearly not your goal.  Good luck.
Title: Re: Grover's disease
Post by: anndrew on Wednesday September 26, 2007, 06:36:18 PM
Tonya,
Thanks for you input, I greatly appreciate it. :)

Drew
Title: Re: Grover's disease
Post by: fibrogrover on Friday September 28, 2007, 11:14:04 AM
Hi All,
I have enjoyed reading all the grover post for a few weeks and just joined the forum.  I was diagnosed with Grover's 3 months ago.  My chest and under my arms was really itchy and had lots of red bumps.  The derm felt that I was actually "over" treating it origianlly because I was throwing everything at it but the kitchen sink... every over the counter cream imaginable.  So...she had me lay off everything I was using for a while and just gave me anti itch oral meds for night.  I got through the flare and now the grover's seems to be gone.  What I do occasionally notice is 2 or 3 little red bumps that raise up somewhere on my chest.  They come for 3 or 4 days and if I just use a bit of lamisil (which the derm said would just sooth the inflammation) the rash seems to dissapate.  So far a few months into this condition I seem to have things under control.  I understand that many if not most of you here have almost constant flares and this condition being called "transient" is very inaccurate.  Does anyone know of a site that gives statistics for what percentage of cases resolve completely and what cases go on and on with flares?  I will continue reading all these posts because I find them extrememly interesting and helpful.  I am a Doctor of Chiropractic and have a post graduate degree in nutritional therapy.  I am definitely going to work on some nutritional appraoch to trying to help Grover's.  I have seen the posts of Mercury toxicity and I know for a fact that Mercury causes huge problems with auto immune and also just the liver being overloaded.  NAC and milk thistle may possibly be of help.  I am glad to be here and wish you all well.  :)  Mark
Title: Re: Grover's disease
Post by: jd1 on Friday September 28, 2007, 04:33:37 PM
Mark, I'm very interested in your comments in general re Hg and autoimmunity and also specifically the impact on the liver being overloaded.  Can you elaborate?  Thanks,
Title: Re: Grover's disease
Post by: KiwiJo on Saturday September 29, 2007, 04:13:19 PM
Hi Mark - Can you tell me what the oral anti-itch meds were that your doctor prescribed?  Thanks, Joanna
Title: Re: Grover's disease
Post by: Sundowner on Thursday October 04, 2007, 08:15:25 PM
I'll second that Joanna--what I'd give for a magic pill that would make the itching stop :)

Chuck
Title: Re: Grover's disease
Post by: microwave on Saturday October 06, 2007, 08:29:37 PM

I have tried the Calagel to no suceess, and am now on Prednisone 3 a day. I am back on the prescription cream Tiamol twice a day. The light treament works best at 25 secs as there is improvement but not at 55 which I was up to. I will update in another 2 weeks to let you know if this is finally working, as My Doctor feels it will.
Peter
Title: Re: Grover's disease
Post by: fibrogrover on Wednesday October 10, 2007, 02:10:53 AM
Hi again....to answer your questions about what anti itch med the derm Rx it was two differant liquids.  one was hydroxyzine 10mg/ml syrup and I took 1 teaspoon every 6 hours.  The other was Zyrtec 1mg/ml syrup PFI and I took 1 teaspoon every morning.  It did work to control the itch at least partially.  I still was a bit itchy until the lesions healed which took about a month.  I found that lamisil was very soothing and helped the bumps calm down quicker.  I was clear for almost a month and then had a busy day at the office and got a bit damp (sweaty).   the next day I noticed a few red bumps under my arms and then some more a day later.  Now it is maybe 20 or 30 small red bumps down the side of my chest and a lil patch under my arm that looks like a type of small psoriatic patch (about the size of a dime).  That is the only area that seems a bit itchy now.  I am hoping this outbreak isn't going to keep going like the first one did because that was horrendous.  To answer your questions concerning mercury toxicity and how it affects the immune system...any kind of heavy metal toxicity can have a major impact on the way the immune system functions.  the human body is so very complex and is in such a fine balance when it comes to all of it's hormones, chemicals and neuro transmittors.  A toxic metal like Mercury can throw the liver into overload and that can create a huge imbalance in so many chemicals.  Most people have heard that the liver is the main chemical factory of the human body but these chemicals control so many other endocrine glands that also produce hormones and chemicals.  With rashes and itches there is normally a huge release of histamine which is often inappropriate when there is truly no antigen for the histamine to control.  I have a feeling that with many conditions like grovers and Hailey's...the system is just out of balance and possibly toxic in some way or another.  I know that they say that grover's is partly due to sun damage and the skin losing it's basement membrane holding ability and that is likely true as well.  but many people that have sun damaged skin do NOT get grover's and there must be another factor involved like I just stated.  I am not a research scientist and not a derm.  I am a chiropractor that has a special interest in nutrition and particularly conditions like Fibromyalgia and CFIDS that can be helped (NOT CURED) through natural means.  I am starting to believe that grover's is kinda like all these wacky syndromes I see in my office.  I myself have Fibro too...it is a "semi" auto immune condition.  I say semi because there is some connection between the bodies inappropriate response to certain antigens and fibro.  Is grover's similar?  Could be and maybe someday I will find proof.  There is a drug that is being researched for patients with all sorts of auto immune syndromes called LDN or low dose naltrexone.  It is way too complicated for me to get into the whole thing here but if you go to LDN.org, you can read all about it.  As for detoxing the liver.....it is relatively easy.  liver stress can hurt the function of the liver but the liver heals readily when the stress is eased.  Liver cells regenerate faster than most other tissue in the body.  There are a slew of detox diets out there on line and also in health food stores.  Milk Thistle and also NAC help tremendously.  Pure water by the quarts and good healthy eating.  We all know what is bad for us by now, don't we?  No rocket science here.  Just good old fashion clean living.  No cigs, no booze...oh well...sorry.  If you put yourself in "boot camp" for a couple of months, you will detox, lose wt and overall have a cleaner healthier body.  I have done this before 3 separate times for my fibro and each time it has helped tremendously.  I am a realist and realize I can not live life denying all of life's pleasures and I can't live in a bubble....so I haven't been a saint.  But I intend to do it again for the grover's and I am fairly sure that it will help ease the overall flares in either frequency or severity.  At the very least I will lose a bit of wt and feel better as I scratch...lol.  I don't know if I answered any of your questions but I do like the idea of just being able to share my overall feelings and discoveries.  The stuff I have found out about Fibro I am sure can also apply to a condition like grover's and other syndromes as well.  I wish everyone a grover free future.  Mark

Title: Re: Grover's disease
Post by: jd1 on Wednesday October 17, 2007, 03:44:54 PM
Hi Mark.  I was esp interested in your comments re Hg and immune disorders b/c after I had chelated for a couple of months, my very high ANA (which I had told would always be positive) came back negative.  That was about 1 1/2 years ago and I haven't had it tested again.  I was also interested re the liver connection b/c this year I have had two bad flares and each was during a period of time of fairly heavy drinking.  I'm not sure if there is a connection, but I'm not convinced that there isn't either.  Thanks for all the info.
Title: Re: Grover's disease
Post by: microwave on Thursday October 18, 2007, 09:44:41 PM
Hi  to All Grovers
Said I would get back in a couple of weeks, a little late but here is an update, I am getting better, no itching and only a few new spots.

I have been applying the Tiamol cream and taking Light Box treatment for 25 seconds daily or at least 3 a week. Keeping my nails short so as not to scratch and then put on the cream is helping them heal. My spots are more like scars now, starting to fade away. the other major change is the humidity broke and we are having cooler weather now.

A Healty itch free day to All
Microwave
Title: Re: Grover's disease
Post by: anndrew on Sunday October 28, 2007, 06:24:06 PM
Jack,
I was reading your post and they looked very interenesting.  I have had grovers for about a year now.  In addition, I have had a very dry itchy body and scalp.  I saw dr. danzig and started chemet about three months ago and a month ago I got my last bit of silver out of my mouth ( I actually didn't think I had any but its hard to see the uppers).  I saw another dr ( Bolte) who found some old pesticides in my system ( they have been banned for 20 years)  and he started me on weekly saunas and several supplements for my liver.

Ok here is my question, what do you do for dry skin, I take a ton of flax-maybe 20 grams-some black current oil and some fish oil and I am not sure its helping.  Once a week I read Cutler's book ( pg 152 that states that extremely dry skin is typical for mercury poisoned people and that goes away as the mercury does.  You seem to have solved your dry skin issue-what did you do?

Thanks for your help-I do appreciate it.
Drew
Title: Grover's disease: best advice I can give
Post by: grantsoo on Monday November 05, 2007, 10:31:25 AM
Having had Grover's for over 2 years and shared the despair that I've seen in monitoring this forum, I realized this morning that I had not shared the one thing that has brought me the greatest relief overall.
A year ago I went into a "Anything for a Buck" store, or maybe it was a "Dollar" store and bought a back scratcher.  It cost $1.00 and has been the best investment ever.
When everything else fails I can always rely on my back scratcher as the last resort.
If you decide to get one, make sure the "claws" are as sharp as you can get.  Sure, the mess it leaves behind may not be pretty, but at least for a few minutes - relief..............
Title: Re: Grover's disease
Post by: Sundowner on Monday November 05, 2007, 03:45:19 PM
Back Scratcher--Be careful folks!!!  I also have had Grover's for 2 years and have also enjoyed the heavenly feeling of temporary relieve a rough-surface back scratcher can provide.  But the damage to the skin (i.e. the cuts, bleeding, scabs, etc) is not worth it in my opinion, so I don't do it that way anymore (as much as I'm tempted to).  It just ends up making the problem far worse.  Instead, I use easier methods that won't cut the skin, plus I use anti-itch creams.  The intense itching problem is not an easy nut to crack, no matter how we deal with it.  But don't damage the skin.

Chuck     
Title: Re: Grover's disease
Post by: platypus on Monday November 05, 2007, 04:18:11 PM
I started using over the counter Benadryl Gel (http://www.pfizerch.com/product.aspx?id=369) and found it offers good relief.
Title: Re: Grover's disease
Post by: knothole on Thursday November 08, 2007, 03:59:08 AM
I started using over the counter Benadryl Gel (http://www.pfizerch.com/product.aspx?id=369) and found it offers good relief.

Just go to a CVS or Walgreen's and buy their house brand.  Read the label and you'll see it is the same and you will save a few dollars.
Title: Re: Grover's disease
Post by: Aquababe241 on Thursday November 15, 2007, 12:42:04 PM
Hi Jdl,

Did you do the Colonix cleanse and is your skin better?

It would be nice to hear from those on this website who have done parasite cleanses, liver flushes and colon cleanses and their experiences.  I only learnt about colon cleansing last year having had a flare up of Eczema since 1998. 

However, I have cleaned up my diet (except for some lapses which I truly regret), juice a lot and use my Vitamix blender regularly.  I grow sprouts such as mung, green lentil, puy lentil, rye and sunflower and eat at least 60% raw.  I've gradually reduced my chicken intake and replaced this with salmon and mackerel and have noticed that my skin always looks fantastic the following morning if I've had salmon, avocado and kefir the previous day.

So diet is important, but the skin will always get worse again, because of the mucoid plaque and parasites which release their toxins into our cells and bloodstream...It's an ongoing process, because parasites can be picked up from anywhere...food, kissing, pets, door handles...

I'm on a mission to get my colon as clean as a baby's then I will take some photographs of my skin and probably write a blog up - Nice One Aqua!!

Aquababe
Title: Re: Grover's disease
Post by: jd1 on Sunday November 25, 2007, 07:44:17 PM
Hi Aquababe,

I'm not sure where you got the idea that I would be doing the Colonix cleanse.  I'm not into it at all. 

Three of us tried liver cleanses for a couple of months.  None of us had any change at all in our skin.  I buy into Dr. Dantzig's research regarding mercury toxicity and damage to the basement membrane since I have had dramatic improvement in my skin and health since following his chelation protocol.

Good luck.
Title: Re: Grover's disease
Post by: anndrew on Wednesday December 12, 2007, 02:49:04 PM
Hey has anybody's doc tested environmental chemicals-Accu-chem lab does the work.  Seems to me like that they could play a roll in grover's. 
Drew
Title: Re: Grover's disease
Post by: piper on Friday February 29, 2008, 09:23:11 PM
Greetings,
I've read about a number of experiences and observations in the Forum related to Grovers but nobody has yet mentioned the odd feature that my case exhibits. For no reason that my Dermatologist can explain, my rash is exclusively on the left side of my torso and my left leg. The really odd thing is that there's a straight line running vertically down the center of my chest and back that defines the transition from normal skin to rash.

The only thing in your body I'm aware of that's partitioned like that is your nervous system. So it seems likely that the outbrakes might be infections of or irritations of the nerves on my left side.

So, what do you think?
Title: Re: Grover's disease
Post by: Brian212 on Tuesday March 11, 2008, 01:56:17 PM
Hello all,

I've read with great interest through this thread as I too have (had) Grovers Disease since 2004. One theory is it's caused by the sweat glands which is a theory I subscribe to. My Grovers appeared after I had lived in Thailand for six months in '04 working predominately outdoors where I was always hot and sweaty. I am a 52 year old white male where I am otherwise in excellent shape and health. My Grovers was the classic case of being on my front torso. It never appeared on my back, extremities or got any worse from its original condition. 

I got no joy from dermatologists. They basically just threw up their hands and said there is little or nothing they can do about it other than some creams to control the itching. My Grovers never itched and basically never really bothered me unless I went shirtless on vacation or something.

I have found for me what has turned out, looks like a cure or at least, clearing up the Grovers lesions. I apologize for the 'tease' but I don't have time at the moment to go into detail. I will later today or perhaps tomorrow detail what I have found works for me.

Title: Re: Grover's disease and Bacterial infection.
Post by: Mark S. on Wednesday March 12, 2008, 03:45:02 PM
HEY ALL!

It's been a while since I last posted anything to this forum... It seems like not a lot of traffic, as we all know there is no cure for this damn disease...

Biopsy - 4 years ago- said Darier's disease, but it doesn't fit... Grover's really does in my case..

Recently, My grover's got out of control, and I realized, that it was probably another bacterial infection. I'm on erythromycin now (250mg) for 10 days.. it's clearing up.. So I'm wondering, what causes this to go from benign ugly red spots to a nasty (dangerous?) bacterial infection? I'm a healthy 59 yo male. My grover's seems to get worse in the winter months, - when I'm NOT exercising (I bike daily in the summer + work in the garden) -
and less sunlight..  In winter, I keep it cool in the house.. so I need to bundle up.. which I THINK - traps body moisture, and promotes the growth/spread of the red dots... It seems that if I kept the temp in the house higher - say 72 degrees, I could wear a lot less clothing, and thus reduce the body moisture trapped by the heavy clothing...

Also, I'm wondering what effect exercise/sunlight (I wear long sleeve shirts/hat/sunscreen) has in the summer when my Grover's seems to dissipate...

ARGH!!!!

Any Doctors out there that can comment??

Is a Bacterial infection common to grover's patients who live up north.. ??
People in the south, do you wear less, the thus have easier outbreaks??

Anyone Anyone???

*bangs head on wall*



Title: Re: Grover's disease
Post by: jd1 on Wednesday March 12, 2008, 08:24:34 PM
In 11/2007, there was an article published called "Antibiotic Ointment in the Treatment of Grover (sic) Disease".  Cutis, 2007:80:72-74.  9 people used the ointment once a day for a month, with varying degrees of relief.  I tried it for 2 days and it seemed to irritate everything, so I stopped.  Even if it were to help a disease, the rash didn't like that goop on my back.  2 of the men who post here tried it for the month, and both said that neither were helped by the treatment.  I just mention it because you said that you think it is a bacterial infection. 
Title: Re: Grover's disease
Post by: Mark S. on Thursday March 13, 2008, 05:27:01 PM
Hi JDL,

Thanks for your post.. I did initially think of the idea of trying antibacterial ointment, but
no luck for me... I really don't know why my grover's seems to get out of hand to the point
where it becomes infected... I'll ask the doctor that when I go back in a month for a followup..
BTW, I was first diagnosed with Darier's/Grovers 4 years ago, when the little red dots
spread from my chest to all the way around my back, and onto my arms I think..
It was then first diagnosed as a bacterial infection - and later biopsied as Darie'rs..

ON A DIFFERENT More UPlifting note...

Unsure if anyone saw this link, or if it's already been discussed here,
 but a week or more ago, I googled "Grover's Cure" and came up with this link:
http://cat.inist.fr/?aModele=afficheN&cpsidt=1036590

It summarizes one doctors finding that an 80 yo male suspected of Grover's actually had scabies!
Easily cured!

Here is the interesting quote:" Our observation further highlights the unusual association of Grover's disease with S. scabiei mites and emphasises the importance of excluding this easily treatable skin infestation in all patients with Grover's disease."

So Folks... consider that option! It's gross, but it may be a cure...
Title: Re: Grover's disease
Post by: bunnie on Thursday March 13, 2008, 07:19:13 PM
Hello Mark , was interested to read that article, because I was treated for scabies too in the very early days, the first episode I had in my life; although I do have a different disease, it is never the less an autoimmune condition.
I wondered from your post, if you were thinking that this article was saying that scabies was the cause of Grovers?
It is not saying that of course, but that the scabies may have triggered the genetic predisposition. As scabies mites burrow into the skin to lay there eggs, ("the black scratches" which appear on the skin , are in fact just that), it is not suprising that an immune response could be mounted against those "intruders", but as we are predisposed to autoimmune conditions, and depending on which genes are involved in any particular case, (Liga in me Grovers in you) an abnormal response occurs, misdirected to *self*.  There are no cures for these mutated genes predisposing people to these conditions. Unless a drug can be made to alter the function or regulation of the subsequent malfunctioning genes. The particular disease you have is simply the pathogenic result of that abnormal immune response. (auto=greek for "self", autoimmune)
I was talking with a consultant dental surgeon at  my hospital about Amalgam fillings and mercury inciting or triggering this predisposition. Two were very interested in talking about this, because they had just finished a course with researchers into the subject, quite recently here in the UK. One surgeon has been a consultant for more than 30 odd years, the other about 15 years.They told me and I quote; " there is no problem whatsoever with Amalgam fillings causing or triggering Autoimmune disease." They were fully aware about all the articles on the subject. They said in fact, that IF there was any possible danger, then the only time that this could occur, would be in the act of removing the filling!  (not that they were saying it can, quite the opposite in fact.)  The reports , (and I have read one or two personally) clearly have infused mice with horrific amounts of mercury over a long period of time. (for a mouse)
The theories have not of course been tested on humans for obvious reasons. As these consultants pointed out, one could never ingest that amount of mercury in a whole life time from tooth fillings, or anything else, because mercury is toxic and one would be very ill indeed, in fact one would die from poisoning! Just a link to confirm the genetic predisposition. Mutated genes cannot be repaired, and the response occurs by a combination of other malfunctioning genes involved in that specific response. Traumatised skin, no matter what the cause, either by exogenous (non-self, external  factors ) or endogenous factors (internal factors), is very susceptible to infection, either bacterial , or as is more often the case fungal infections. Fungal infections feed off the  keritinocytes, a normal protein in the skin, and thery love it when there is an easy way in!  So you have the skin being traumatised by genetic factors within, and fungal and bacteria without.
Because I always have areas of my body with broken or inflammed skin, I always bathe with Hibiscrub, rinsing off well, to prevent infections. (I once had MRSA)
http://dermnetnz.org/scaly/darier.html
bunnie
Title: Re: Grover's disease
Post by: jd1 on Thursday March 13, 2008, 08:53:19 PM
Mark, that's really interesting.  I wonder what is checked when a biopsy is sent to a lab....is it checked for the less esoteric stuff like scabbies, viral or bacterial infections?  Thanks for posting the link.
Title: Re: Grover's disease
Post by: Mark S. on Friday March 14, 2008, 05:24:26 PM
Hey!

Thanks for your posts jd1 and Bunnie!

Bunnie, what an amazing post. thanks!  No, I wasn't inferring that Scabies causes grovers.. I was just pointing to an online article that suggested that a rash Suspected to be grovers, could in fact just be a scabies infestation! Treatable! Not so for me I guess..., as I have not seen any, as you say "the black scratches" ... maybe some varicose veins, but no scratches! LOL ---------> I just reread your post, and agree, that something probably triggered the genetic predisposition in me. No one else in my family has it... (only 1 brother - 4 sisters)
AND Sorry to hear you had MRSA! OMG! That is so scary..  and really, it scares me, if my grovers keeps getting out of hand as I age (I turn 60 in april).. and becomes another large area bacterial infection - open to mrsa?? OY!

And jd1, glad you liked the link. I found it fascinating. I also wondered about the initial biopsy.. does the dermatologist sending in the sample to be biopsied suggest to the lab technician what to look for???
Also, when I went to the Drs. office to show her the rash and suggest that 1) it was probably infected, and I need antibiotics (she  gave me the script, meds are working now.. - no itch).. and 2) that maybe the grovers was caused by scabies.. she said no... probably not.. BUT I had printed out the article, and was so flustered in front of her, (I'm easily intimidated by Doctors I guess..)...  that I didn't bother to search my clothing  for it.. so i didn't end up giving her the Doctor authored article! (has a lot more weight than coming from me!)

well, I am feeling up today, as it's 50 here - in Michigan.. some flower bulbs are showing through the ground, and I'm going out for a bike ride... Hoping that the grovers clears up as the spring/summer progresses..

Happy spring to all..
Title: Re: Grover's disease
Post by: bunnie on Friday March 14, 2008, 06:03:41 PM
Hello again Mark. Don't worry about your age, just a sprite of a chap! I'm 61!
Just got back from my derm today. He knows everything I say on here! and I checked with him yet again, on certain articles referring to
a) food and supplements
b) metals such as mercury
c) and basically what I post.
He confirms everything, I have posted on these subjects. He is one of a handful of very specialised derms in the UK, and is a co-author and editor of Rooks dermatology volumes, which globally is the Derms "bible" and main reference.
Your grovers Mark , could more than likely just occurred idiopathically. Most autoimmune diseases are just that, in fact the majority. That means it occurs spontaneously , of self , to self and for no apparant reason. (Idio=self) It's in the name!
A normal cell activation could have triggered the mutated genes into action, or a situation called molecular mimicry, when cells of the immune response present an antigen which appears as "self". Or it could be a hormone release, you get my meaning? the list is so long. If it was an exogenous factor (out of the body) there would be evidence of that either in biopsy, certainly in blood or both. The evidence would br there if anything from outside the body triggered this into action. Control is the goal. Anything that makes you comfortable. It cannot be cured-period. It is a part of who and what you are, in fact your DNA. DNA is not necessarily inherited DNA. To give an example from my blog....
Quote
*Somatic Hypermutation -Somatic hypermutation (or SHM) is a mechanism inside cells, that is part of the way the immune system adapts to any new foreign microbes which confront it. SHM diversifies or alters the receptors that the immune system uses to recognize foreign antigens, and allows the immune system to adapt its response to new threats during the lifetime of an organism. Somatic hypermutation involves a programmed process of mutation affecting the variable regions of immunoglobulin genes. Unlike many other types of mutation, SHM affects only individual immune cells, and the mutations are not transmitted to child offspring.
Mistargeted somatic hypermutation is currently under investigation as a possible mechanism in the development of Bcell Lymphomas.
The hypermutation process also uses cells that auto-select against the 'signature' of an organism's own cells. It is hypothesized (it is at present under study)that failures of this auto-selection process may also lead to the development of an autoimmune response.
Distubances such as somatic (relating to the body) mutations in cells of the lymphoid system could in principle give rise to forbidden clones of cells that fail to recocognise self and instead react immunmocologically with normal tissues.[/
quote]
Bunnie

Title: Re: Grover's disease
Post by: anndrew on Saturday March 15, 2008, 11:19:50 PM
Just a quick note.  I really think Grover's is a symptom of Environmental Illness.  I would suggest being checked out by an EI doctor.  Am I the only one that has done that on this board?
DD
Title: Re: Grover's disease
Post by: kutter on Sunday March 16, 2008, 07:28:22 PM
Bunnie, I see that you have posted several times on this topic, and your posts suggest that Grover's Disease is in fact an autoimmune disorder.  A quick search on your posts site-wide shows that you suggest this characterization applies to a multitude of other skin conditions.  Further, I did a Google search on "'Grovers Disease' autoimmune" and the only evidence I find of such a connection are your posts on this website. I appreciate that in your first post on this topic you write, "I am not certain that Grovers is an autoimmune condition," however that disclaimer is not present in your several other follow-up posts, and those posts do seem to imply as if it is fact that such a connection exists.

I am someone who deals with Grovers himself and has found this forum topic a great source of information.  I am a bit concerned such speculation will muddy the waters, particularly for anyone who may have been recently diagnosed with the condition and might be looking on the web for the first time for solid information.  If you know of any medical evidence specifically showing that Grovers Disease is an autoimmune disease, please share it with us; otherwise, please be careful to label your suppositions as exactly what they are, your own speculation.  For a condition as poorly understood and thinly studied as Grovers Disease some speculation is natural.  We've all speculated on the causation, I'm sure.  It's fine to talk about theories in a forum, as long as they are clearly labeled as such.
 
As for me, I live in New York City and have been a patient of Dr. Dantzig (thanks to recommendations on this board).  Dr. Dantzig believes Grovers is caused by a combination of factors, specifically a relatively high level of mercury in the body (or a particular sensitivity to mercury) combined with a history of damage to the skin, such as sun damage.  He is the first to say, however, that his theory is based upon anecdotal evidence and that he wishes he had the resources to conduct a full clinical study, but the money just isn't there.

Over a year ago I had my amalgam fillings removed, underwent a single course of chelation therapy, and tried to eliminate seafood from my diet, all per his recommendations.  My condition did seem to improve markedly.  Unfortunately, more recently my condition has worsened somewhat, though it doesn't seem to be as severe as it had been in the past.  In my opinion, the results of Dr. Dantzig's are somewhat encouraging but the jury is still out.  I have appreciated hearing the views, experiences and recommendations of all other Grovers sufferers on this board.
Title: Re: Grover's disease
Post by: jd1 on Sunday March 16, 2008, 07:39:28 PM
Kutter, thank you very much for your post and for sharing your experiences with Dr. Dantzig.  I am on the opposite coast, so I have never personally met him, but he has been kind in sharing his research via email with me.  Someday I will be in NY and I will make that appt.

I wonder if the worsening of your condition has to do with ongoing Hg exposure, either from internal or external sources.  In his book, Andy Cutler discusses how Hg settles in different areas of the body and is released over different periods of time - ie we can clear it fairly easily from the blood, but the 1/2 life in the brain is something like 20 years.  The point is that you can be poisoning yourself from within as Hg is released from deeper tissue.  Or, of course, you could be getting Hg from any one of a million outside sources in our polluted world.

Thank you very much for your well-spoken post.
Title: Re: Grover's disease
Post by: kutter on Sunday March 16, 2008, 08:16:38 PM
Thanks, JD.  I haven't read Andy Cutler's book; I've only read excerpts but it sounds very interesting.  I too have wondered if my slight remission is caused by an increased level of mercury in my skin.  I am considering going to Dr. Dantzig to start another round of Chemet, but I'm concerned I may in the end just be moving the Hg from deeper tissue toward the surface.  I'm also concerned about the cost of Chemet -- it ain't cheap. 

I think I'll probably start with another blood test and go from there.
Title: Re: Grover's disease
Post by: bunnie on Sunday March 16, 2008, 10:20:25 PM
May I just quickly reply to your post Kutter.
First of all I have had not said that Grovers is an autoimmune disease, because I understand the jury is still out on it. However it has been stated, on this link and others http://www.emedicine.com/derm/topic426.htm
that people who have Grovers are often found to have Atopic Dermatitis. Atopic Dermatitis (Atopy) is a genetic inherited predisposition to allergies. The conversation on some posts was concerning autoimmmunity, as gut enteropathies were mentioned etc.
Furthermore as I said before, whether or not it is in fact an autoimmmune disease, regarding this..
 
Quote
A quick search on your posts site-wide shows that you suggest this characterization applies to a multitude of other skin conditions.

Those that I have posted on are indeed for sure autoimmmune conditions. There are over 80 diseases which are all autoimmune diseases.  The one thing we all have in common,if in fact the disease is proven to be autoimmune, is that they all stem from the same underlying problem,  for eg.Psoriasis and its phenotypes, my disease a bullous condition, and many others.
The different manifesting diseases of the skin are simply the pathogenic result of the abnormal immmune response to self, in autoimmunity. The named disease depends upon which of the mutated genes are involved, the amount of antigen produced, which part of the body or/and area or layer of skin is affected, and which autoantibody is produced to the antigen.
So your inference within your quote is totally misguided, all autoimmune diseases are in fact associated in that way. Also what I found interesting was The reference to Acantholysis, as this occurs in my own disease. Why would Accutane be prescribed if the cause was not faulty genes? Accutane works by altering the transcription of genes. That's why it works in a number of people, but bear in mind there are usually multiple genes involved in these conditions.
This is a research paper on Grovers. Please note I have a pemphigus variant disease, and it is surprising that it was included and a part of this research. Acantholysis is a process by which the cells come apart, seperating one from another. For eg  cells of the epidermis coming apart the spaces filling with fluid and blistering occuring.
Quote
Acantholysis and spongiosis are associated with loss of syndecan-1 expression
Ilene B. Bayer-Garner1 1 Pathology, ,
Brad R. Dilday1 1 Pathology, 
Ralph D. Sanderson1,2 1 Pathology, 2 Anatomy and and
Bruce R. Smoller1,3 1 Pathology, 3 Dermatology, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
Departments of 1 Pathology, 2 Anatomy and 3 Dermatology, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA
Bruce R. Smoller, M.D., Professor of Pathology and Dermatology, Department of Pathology, University of Arkansas for Medical Sciences, 4301 West Markham Street, Little Rock, Arkansas 72205, USA
Tel: +1 501 686 8807
Fax: +1 501 603 1479
Abstract
Background: Syndecan-1, a heparan sulfate proteoglycan present on the membrane of keratinocytes, functions in intercellular adhesion. Acantholysis and spongiosis are both characterized by diminished intercellular adhesion that may lead to blister formation. In spongiotic conditions, desmosomal stretching occurs prior to cell separation while in acantholytic conditions, cell separation occurs without stretching. While many of the structural relationships have been described, the molecular interactions regulating keratinocyte to keratinocyte adhesion are not yet fully understood.
Methods: Sections from ten cases of Grover’s disease, two pemphigus vulgaris, one pemphigus foliaceus, one bullous pemphigoid, two herpes simplex, and ten spongiotic dermatitis were stained with BB-4, a monoclonal anti-syndecan-1 antibody.
Results: Nine of ten Grover’s, all three pemphigus, and both herpes cases showed absent or markedly decreased syndecan-1 expression by acantholytic keratinocytes, with a sharp delineation from adjacent unaffected skin. The remaining Grover’s case showed moderate loss of syndecan-1 expression. The pemphigus foliaceus case showed retention of staining along the basal cell layer, but expression was lost in the mid stratum spinosum. All ten spongiotic cases showed a diffuse mild decrease in staining, with loss of syndecan-1 expression surrounding microvesicles. Bullous pemphigoid, as expected, did not show loss of syndecan expression.
Conclusions: The loss of syndecan-1 expression evident in acantholytic conditions and, to a lesser extent in spongiotic conditions, may contribute to the decreased intercellular adhesion characteristic of these lesions
syndecan-1 is a gene. During a given immune response, certain  genes within that response are transcribed producing proteins. As mentioned below the word encode in medical terms means to receive or to register stimuli. Defects in this gene would produce an abscence or markedly reduced protein production as stated in  the "Results" paragraph above, and which was proven to be the case in 9 out of 10 Grovers cases.
Quote
The protein encoded by this gene is a transmembrane (type I) heparan sulfate proteoglycan and is a member of the syndecan proteoglycan family. The syndecans mediate cell binding, cell signaling, and cytoskeletal organization and syndecan receptors are required for internalization of the HIV-1 tat protein. The syndecan-1 protein functions as an integral membrane protein and participates in cell proliferation, cell migration and cell-matrix interactions via its receptor for extracellular matrix proteins. Altered syndecan-1 expression has been detected in several different tumor types. While several transcript variants may exist for this gene, the full-length natures of only two have been described to date. These two represent the major variants of this gene and encode the same protein.[1]
SEE...
http://en.wikipedia.org/wiki/Syndecan_1
I thought you would have found this information interesting, as it is proven research, nothing to do with mercury in tissues etc. However, my efforts in attempting to support you with this very reliable information, seem to be falling on stoney ground. I'm sorry therefore if I have intruded.
Bunnie
Title: Re: Grover's disease
Post by: anndrew on Monday March 17, 2008, 12:35:47 AM
I know I must be the only one but I believe that Grover's is a sign of toxic buildup in your fatty tissues.  Toxic buildup could be mercury, or many other various chemicals we have contact with. 
I also saw Dr Danzig, twice.  He is a very nice man and has helped some people.  I did try chemet for 5 months and had almost zero improvement.  There is another brilliant doc not to far from Dantzig-his name is bolte.  He discovered some  chemicals in my system.  I believe he is on the Montel show on the 25th.  If I had a chronic condition i would see him.  For my money he is simply the best in the world at diagnosis.  ( alright maybe he is just in the top ten)
 
Once i knew what i had in me I went to see an EI doctor in Dallas-who is considered the best EI doc in the world.  He agreed with Bolte and has led me through treatment.  Its been about 16 weeks and things are clearly better.  FYI- he told me 6-8 months.  I would say things are about 70% better.  It all came down to chemicals in my fatty tissue.  Which makes lots of sense to me. 

I wouldnt discourage anyone from trying to find their own solution and I wouldn't post this if it wasn't working for me.  It seems to me like Grover's is a symptom of several things-my uneducated bet is it has several causes.


That's about all I know---
DD
Title: Re: Grover's disease
Post by: grantsoo on Monday March 24, 2008, 10:44:00 AM
In 11/2007, there was an article published called "Antibiotic Ointment in the Treatment of Grover (sic) Disease".  Cutis, 2007:80:72-74. 

I'm glad to see the forum come alive!
Interestingly, after a couple of years of complaining to my doctor about my itchy rash, he finally took a swab and it came back as a staph infection.  It was a very stubborn one, and took 2 runs of antibiotic to get it.
Except it didn't get rid of the itchy rash.  After another couple years of complaining to the doctor, he finally sent me to a dermatologist who said excema, but if I wanted, he would do a biopsy.  I said please!
Diagnosis:  Grovers  Treatment: corticosteroid cream.
The cream does work somewhat, however I only use if when I just can't stand the itch anymore as it is linked as a trigger to an eye disease I have.

Northern angle - maybe, I'm from Canada.  Wear lots of clothing in the winter.  I haven't noticed a difference between summer and winter.
Age - 55 - have had it for at least 5 years.

I have noticed some comments by doctors now that the name should be changed from "transient acantholytic dermatosis" to just "acantholytic dermatosis" as it really doesn't seem to be transient.

Title: Re: Grover's disease
Post by: mepen on Friday March 28, 2008, 01:01:16 AM
Hi all those who suffer Grover's,

I recently had the flu and appendicitis and I flared up with the most horrible flare of Grover's ever. (I've had the disease 15 years now). Some spots are subsiding, but other spots keep going. Needless to say, I'm exasperated with this skin disease. I just read through the last few pages of posts and have a number of questions:

MitchItch:
How long now since UVB treatment and are you continuing to stay clear?
How many UVB treatments?
Is it safe?

JRabbit:
Are you still on Accutane and experiencing relief?
How long did your doc say you can stay on low dose Accutane?

Anndrew:
What chemicals did the doctors say are causing the problem?
What does the treatment consistent of?
Medications or supplements and which ones?

Anyone and everyone interested:
I came across a product called grovitin. (You will find this product and website if you google):

grovitin.com   

This is supposedly a German homeopathy "cure" for Grover's.
Does anyone know anything about this?
Has anyone tried this or tried homeopathy?

 
Title: Re: Grover's disease
Post by: Mark S. on Sunday March 30, 2008, 04:59:13 PM
Hi Folks!     Just a little update from me.. my situation and all..

I got pretty sick from the Erythromycin on the 7th day.. so I aborted that treatment. However, the
grover's had stopped itching on the second day of the treatment, and so I think it really helped.
It did take me about 5-7 days to recover from the effects of that drug though! UGH! Diarrhea (sp) and all..
I stupidly didn't call the dr. when I began to feel dizzy/weird while on the drug..

Anyway.. It's finally warmed up enough here in michigan to go out and get some exercise. (I know I need
to join a gym to continue exercise in winter)... and it feels so good, and the grovers seems to be
in remission/receeding.. the red spots are still there, but I hope they go away/clear up as the months pass, and I
continue exercising.. (biking 12 miles daily)..  For me, the grover's seems to dissipate in the summer, and
I feel exercise somehow helps.. maybe also because i'm getting more sun? Vitamin d?

ALSO.. I've been putting on some 'hand sanitizer' on the rash, after I shower, and I've dried off. initially,
I could feel the little grover's spots that were 'open' burn a bit.. (I mean the spots that seemed fresh..???
sorry I don't know the terminology).. but now, after a week, I get no burning at all.. so I'm hoping/thinking
this is helping..

So because, when I first was diagnosed with grover's 4 years ago, it was all over me, and was diagnosed
initially as a bacterial infection.. Back then, the penicillin didn't bother me, and it worked good...
So with the idea, that the grover's (on me at least) seems to cause or leads to a bacterial infection on
me, that's why I have been trying the 'hand sanitizer'.  It's 62% alcohol... with a tiny bit of aloe..

I have to say, I'm a bit worried about all of this, because, i'm 60 next month, and I just worry
about the bacterial infection showing up some years.. and if it will always be remedied.. and if
of course, the next time, I can find a variant of penicillin that won't make me so ill, but will work.

I'm also wondering about moving to a warmer climate state, where I can exercise outdoors year
round.. and maybe the grover's will stay in remission. Is this disease found all around the world in
all climate situations or just in the northerly latitudes?

Peace to all, and I hope you all can get some relief!  ;)
Title: Re: Grover's disease
Post by: knothole on Wednesday April 02, 2008, 02:50:12 AM
Hi all those who suffer Grover's,

I recently had the flu and appendicitis and I flared up with the most horrible flare of Grover's ever. (I've had the disease 15 years now). Some spots are subsiding, but other spots keep going. Needless to say, I'm exasperated with this skin disease. I just read through the last few pages of posts and have a number of questions:


JRabbit:
Are you still on Accutane and experiencing relief?
How long did your doc say you can stay on low dose Accutane?


Has anyone tried this or tried homeopathy?

 

mepen,

here is some answer on the Accutane.  When I first had Grovers it would come and go.  Come mostly between November to about March.  But did not itch just read spot and a little itch.  Then after about 3 to 4 years it broke out big time.  Back to the derm and he started me on the Accutane heavy dose (40mg)  for 20 weeks then tapered of to Monday, Wednesday, Friday.  Went about 6 months things improved.  Summer time came was off it for about 4 months.  Then October came and back on M-W-F.  Lasted about 7 months, but things got better but not clear.  I started watching what I ate using some the Chinese idea of inner heat so I would mix color foods and neural foods with some warm foods and stayed away from the HOT foods.  This help also because my inner body felt cooler too.  Still on the Accutane.  As things got better I stopped the Accutane and was free and clear for about 18 months.  Then this December / January I started up again.  Back on the Accutane M-W-F only (40mg)  It has been 2 months now and I will finish the 30th pill on Wednesday.  The back has cleared but the chest is better but so so.  The itching is way down.  Back to the cool foods but not going crazy watching it.  Lots of cream morning, noon, and night to stay lubed up.  Things are too bad, and as summer comes I will be back on the boat skiing with the kids.  Do wear a shirt called a rash guard, and normal hat.  Didn't have problems last year and getting better now. 

This time around the Accutane is working faster.  I will be on it at least another 2 months but it is only 15 pill per month that I take.

It has worked for me and this time a lot faster.  I see Jrabbit is doing fine with it.  So hopefully some of this is helpful.

knothole
Title: Grover's disease/accutane and general health
Post by: jrabbit on Tuesday May 06, 2008, 12:37:58 AM
Hi Mepen.....sorry to hear you are suffering so. And sorry it's taken me so long to respond to you....been a while since I read these boards. Here's my 2 cents for what it is worth:

1. Accutane. I am still on it...and will be for life. My derm says that accutane is not a cure...it only suppresses the grovers. So she has patients on it for life at a very low dose....20 mg a day or less if possible. While I am not happy at being on it for life (side effects, blood tests every month and can never have kids) I am willing to be on the meds if it means that the grovers is gone. Maybe I'm just that vain....but as a woman who makes her living on her brain AND her image....life with grovers is just not an option. My life since being on the accutane and grovers-free has been WONDERFUL and I highly recommend it as opposed to other treatments which ....as you can tell from this board....don't really work.

2. Flare-ups with sickness. Even when on the accutane...if I get a really bad infection or fever..the grovers will break through the meds and flare up. Generally....we raise the dosage and wait out the sickness...and eventually it goes away again. My theory is this....sickness causes strain on the body and the immune system. Any immune system strain puts GREAT strain on the skin which is the largest organ of the immune system. So its no surprise that when sick...grovers gets worse. Also....when you have a fever...your body temperature goes up and you sweat. Hello!!! We all know this causes grovers.

3. Diet. For me...the healthier I eat the better the grovers is. Healthy is different for everyone...but if I stay away from foods that upset my stomach...soy, gluten, dairy etc. and do not eat any sugar expect fruit...I find that the grovers is much better and I can reduce the meds to VERY low doses. As I said....this is what's healthy for me....and I'm not saying that this combo will work for everyone. My suggestion re diet is this. Pay attention. What causes you to flush (spicy food? acidic foods?) and what upsets your stomach? (dairy? wheat? meat?) - figure it out and stay away from it. Also...sugar as in white processed sugar causes your body to burn hard (burns glucose instead of breaking down protein and fat) and causes "heat" in your system....this heat is the worst thing you can do for grovers. Look....you have to live your life....eat the things you love within reason. I'm just saying that if you are serious about keeping the grovers at bay....be mindful of the connection between what you eat and how your skin reacts and make you choices. Food does not cause grovers...but it can aggravate it!!!!

Hope this answers your questions. Feel free to get back to me if you want more info.

Good luck all!

J.
Title: Re: Grover's disease
Post by: bunnie on Tuesday May 06, 2008, 10:23:48 AM
May I just correct this..Please note I have made bold certain words simply for notification and no other reason.
Quote
My theory is this....sickness causes strain on the body and the immune system. Any immune system strain puts GREAT strain on the skin which is the largest organ of the immune system.
What accutane does in the body
Isotretinoin (Accutane) noticeably reduces the production of sebum and shrinks the sebaceous glands. It stabilizes keratinization (see definition below) and prevents comedones (see definition below) from forming. The exact mechanism of action is unknown, however it is known that like other retinoids, Isotretinoin works by altering DNA transcription. The resulting effect of this transcription, decreases the size and output of sebaceous glands, makes the cells that are sloughed off into the sebaceous glands less sticky, and therefore less able to form comedones.
keratinization The process by which the epidermis forms its outer layer
Comedones are small, flesh-colored, white, or dark bumps that give skin a rough texture. The bumps are found at the opening of a sebaceous follicle (pore).
With regard to the sentence which I have made bold above.
This is the whole point which I have tried (unsuccessfully) to make in my posts on here. If a gene/or genes are mutated, predisposing the person to either Atopy (genetic abnormal response to exogenous -outside factors) or autoimmunity (genetic abnormal response to endogenous-inside factors) then when the "information" from these genes are transcribed, within an immmune response, (whether abnormal or normal) and made into proteins, then if that information is mutated or faulty, then these proteins also will be faulty and therefore each subsequent cell of the immune system will act accordingly, in other words, malfunction. The result of this malfunction in any individual is the condition which manifests. That is how there are many autoimmune diseases (over 80) and hundreds of atopy conditions, because they all stem from mutated genes. That is the common denominator, between the majority of people on skincell.
To explain a flair in sickness
If one is further hit by another infection , this increases inflammation (the body's first defence) and further production of the cells of the immune system to combat it. It stands  to reason that the condition (which is already manifest,) will heighten too, due to the added inflammation and production of antibody. Therefore the dose of the accutane is insufficient, and so if it is increased it will obviously have a better effect on the flair of the condition.
Quote
Any immune system strain

There is no such thing really, simply because the immune system is adaptable. It is called  "Aquired Immunity" and this is a constant  changing sequence throughout life, where the immmune system is presented with milllions of different types of bacteria etc. and it learns and remembers them all. That is why the immune response produces "memory cells". The immune system is a remarkably effective structure that incorporates specificity, inducibility and adaptation. Failures of host defence do occur, however, and fall into three broad categories: immunodeficiencies, (very serious indeed)autoimmunity, and hypersensitivities.
1)The immune system may not work correctly, either from birth, or as a result of illness, leaving people prey to life threatening infection. (primary Immune deficiency)
2)It may become overactive and react against anything, harmful or otherwise. (Atopy).This is the basis of allergic conditions, such as asthma, hayfever and eczema.
3)Thirdly it may mutiny and attack the body , damaging vital tissues, as in such conditions as multiple sclerosis and Lupus erythametosus. (autoimmunity)
These last two are caused by mutated genes predisposing the person to Atopy or Autoimmunity. The first one is the lack of the ability to produce certain components of the immune system, either by birth defect or destruction through severe illness like cancer for instance. (Leukaemia) Both are very serious, life threatening conditions. Again if the DNA does not have that ability present, then that is because the gene is faulty or mutated.
Quote
puts GREAT strain on the skin
Sorry, but it doesn't at all. The reason why certain cells of the immune system affect the skin in some people occurs for many different reasons. Rather than attempt to explain this list of reasons in this post, you can read all about it here... http://wassail-allthatilove.blogspot.com/2008/03/disorders-of-immune-system-immune.html
Quote
which is the largest organ of the immune system
Not of the immune system it isn't, of the body's vital organs, yes. The skin has nothing at all to do with the immune system, and does not affect the immune system neither in its structure or function. The skin is the body's barrier to infection. It is the other way round in fact. the immune response (not the immune system itself) can have an affect on the skin, as we  can all attest to.
regards Bunnie
Title: Re: Grover's disease
Post by: jrabbit on Tuesday May 06, 2008, 05:23:32 PM
Fine Bunnie. I'll take your points. But mine remain the same.

1. Accutane works. Period.

2. Grover's gets worse when you are sick.

3. Diet does effect Grovers and can be used to help with the condition.

Not that I don't appreciate trying to understand this horrid condition....but at this stage...I'm just grateful to have relief. And I'll bet that MANY on this board feel the same way. You can discuss the thing to death....be erudite on the causes, fluent on the underlying conditions, well versed on experimental treatments...but what we all want is for it to go away.

However that happens for all of us....I'm supportive!

Title: Re: Grover's disease
Post by: jd1 on Tuesday May 06, 2008, 06:20:45 PM
Hi Jrabbit, nice to hear from you.  I want to add my 2 cents in support of your post.  I find that diet greatly impacts my Grover's, but I haven't been able to specifically separate it from stress.  I eat way too much sugar and only recently am recognizing that as a potential health issue, and I'm having a heck of a time cutting down! 

What I've noticed is that when I'm stressed, my normally healthy eating patterns give way to eating a lot of junk, and then my Grover's comes alive.  I have not been able to identify if the trigger is specifically bad eating or stress since for me, one is always closely followed by the other. 

Everyone, here is another crazy idea that I believe I have thrown out here before and will mention again......quite a while ago (maybe 1 1/2 years?) I went to the derm to have the chest and neck treated with Fraxel laser.  It was purely cosmetic.  The area was splotchy due to sun damage.  I have not flared once in that area since the treatment.  A few weeks ago I spent about 1/2 hr several days in a row in a sauna, and I had the expected Grover's flare, although it wasn't bad.  What was interesting was to see the front of me.....the lesions literally formed an outline, stopping at the area where I received the Fraxel treatment.

Many of you are aware of my belief in Dr Dantzig's theory that it is sun damage to the basement membrane combined with Hg toxicity.  What I wonder is if the Fraxel caused healing of the basement membrane, addressing the part of the disease that I could not address with Chemet.
Title: Re Grovers and food .....
Post by: jrabbit on Wednesday May 07, 2008, 01:07:07 AM
Hi JD,

To your question...is it stress or bad eating due to stress? Yes. Thing is....it's probably both.

It all comes down to lifestyle change and your willingness to change it to help your Grovers. Of course we all want a magic bullet...something easy that will make this horrid condition go away. But while there is some relief with meds or other medical treatments....a lot of the severity of the condition comes down to you and the choices you make.

But I ask you this....if so many of you are willing to go to great distances - either financially or time and travel to go through chemet...surely you have the will power to cut down on certain foods??? I know...easier said than done...but really...think about it...and what you have to gain. It's worth it.

I find that whenever I've cut things out of my diet that it's the first week or so that's bad. I pout. I feel punished....then it starts to go away...especially when I see the benefits.

So here's my suggestion. Try baby steps. Aim to cut out sugar for one week. See how it goes. And figure out what you can do from there....you may be surprised.
Title: Re: Grover's disease
Post by: Mark S. on Wednesday May 07, 2008, 05:28:17 PM
Hello to all.

It's a rainy day here, and with time to kill, I thought I'd check this forum and see if there
was/is any activity. Of course, there is now!

My situation: With daily exercise (1 - 1.3 hours of mild biking on the 7 mile bike path (from beginning to end = 14 miles)
and outdoor exposure.. (more sun - more vitamin D..)  and with almost 14 lbs of weight off
of my small 5'10" frame, my Grover's is in remission. I can still see the spots but they are
light brown now, and fading away..

I am dieting.. eating much better, with the exercise, so that may have helped...
I'm outside working in the yard also.. more exercise...

I'm wondering also if my fellow sufferers are also in the northern latitudes, and overweight like me.
Then exercise off some if not all of their winter fat in spring/summer.
I am hoping/praying I can get myself to join a local Gym, and next winter,
to at least get in 3 days or more per week of exercise so I can keep this weight off..
I've also thought of moving to a warmer clime so I wouldn't get into the hibernating
rhythm -> and putting on lots of winter weight like a hiberrnating Bear!
I'm 5'10" now and 188lbs.. still overweight, but I'm working on it.
(I've been poor as of late, but recently started a minimal paying annuity so I could
afford the lowest level gym membership i think)

OH, I talked to the VA Dr. about Grover's and he hadn't heard of it, but looked it up while I was
there. (My non-VA dr. was aware of it, but the Derm Dr. via the non-VA Dr. was handlilng it)..
ANYWAY... the VA dr. said he'd order me some tetracycline (sp) so i'd have it next fall/winter
when/if the Grover's flares up.... I told him I wasn't sure about the shelf life of the drug, but
he assured me it would be OK...

SO i'm now waiting for the meds... and hoping the tetracycline will work if the Grover's flares up!
Title: Re: Grover's disease
Post by: anndrew on Sunday May 11, 2008, 09:35:47 PM
Seriously am I the only one who went to an environmental doctor.  I can not say that I am completely cured but getting better-way better.  All of us seeing doctors and I am the only one who had a doctor test for chemical and other environmental toxins?  With my results so far I am convinced that the ei doc and the theory of toxins in your fatty tissue is the cause and getting the toxins out is the cure. 

Open question- who has been test for stuff like that?
Title: Re: Grover's disease
Post by: Jimbo on Monday May 12, 2008, 03:41:45 PM
Hi All,
I haven't been here in a long time. Dropped in yesterday and I noticed mpen's mention of grovitin. I did a little research and found this site.

http://grovers-options.com/

Apparently there are 3 interesting treatments to choose from, all claiming to successfully treat Grovers. Has anyone tried one of them? I'd be willing to try one. Anyone else interested?

Jimbo
Title: Re: Grover's disease
Post by: jd1 on Monday May 12, 2008, 04:16:48 PM
Jimbo,

Check this out:

Grovitin.com

“contact us at Berlin Homeo Products”

http://www.ripoffreport.com/reports/0/300/RipOff0300794.htm

http://www.ripoffreport.com/reports/0/317/RipOff0317987.htm

Title: Re: Grover's disease
Post by: Jimbo on Monday May 12, 2008, 07:18:35 PM
Thanks jd1. Heard anything about the other two? They're probably cut from the same cloth.
Title: Re: Grover's disease
Post by: jd1 on Monday May 12, 2008, 09:30:16 PM
No, I didn't look beyond what I posted.  I buy into homeopathy for some stuff, but not this.  Grover's seems mechanical to me:  damage to basement membrane + impact of Hg on cellular function = grovers.  I may modify my belief to include Drew's theory that other toxins besides Hg = grover's, depending on how his treatment goes.  That would explain why you and Sundowner did not respond to the Chemet and why some us responded fabulously, but not completely, to Chemet.  So far, I think his theory is reasonable.  It makes sense to me that the mechanism that causes what we see as grover's could be triggered by other pollutants besides Hg.  He is the guinea pig this time.

Anyway, with all that in mind, and considering that those products look to good to be true, I'm not spending any time on them.  I wonder if someone found this board and thought that it was a way to make $$.  But you could give one or all a try and prove me wrong!
Title: Re: Grover's disease
Post by: Jimbo on Monday May 12, 2008, 09:55:33 PM
hmmm...think I'll pass. I took a closer look at the other two and they appear to be bogus too.

Oh well.
Title: Re: Grover's disease
Post by: grantsoo on Thursday May 15, 2008, 10:48:51 AM
Just for the sake of any newbies to the forum - when all else fails, never underestimate the value of a back scratcher.  I paid $1 for mine, but the relief it brings is priceless.

Grant
Title: Re: Grover's disease
Post by: jupiter on Wednesday May 21, 2008, 04:37:35 PM
javascript:void(0);
Yeah, yeah...a garden rake works fine too, Grant, thanks. I'm a newbe to the forum, 67 years at the game of life, male, and was biopsed with Grovers about 9 months ago. It must be quite mild compared to cases many of you have, but my question is: does it start mild and progresses to more sever, or? Another is: how common is this stuff? I'm the only one I know of my acquaintances that signed up for it, in this incarnation at least.
Title: Re: Grover's disease
Post by: grantsoo on Thursday May 22, 2008, 08:03:57 PM
javascript:void(0);
Yeah, yeah...a garden rake works fine too, Grant, thanks. I'm a newbe to the forum, 67 years at the game of life, male, and was biopsed with Grovers about 9 months ago. It must be quite mild compared to cases many of you have, but my question is: does it start mild and progresses to more sever, or? Another is: how common is this stuff? I'm the only one I know of my acquaintances that signed up for it, in this incarnation at least.
I'm the only one I know that has it.  Never even heard of it before being diagnosed.  I've had mine for about 3 years.  It never goes away, goes from itchy to intolerable.  When it gets intolerable I used the corticosteroid cream until it just gets back to itchy.  Lot's of fun!
Title: Re: Grover's disease
Post by: jupiter on Monday May 26, 2008, 02:47:46 PM
Thanks for the reply Grant...although not very encouraging. I live in a dry (usually) desert climate, lots of sun. Moved from the north 15 years ago where I spent a good share of the time doing outside work, so have absorbed mucho skin damaging cosmic stuff.
I was finishing a building in the back yard last Fall, hot and sweaty...sore muscles, so got in the hot tub, and BINGO...Grover's!! Didn't have a clue what the _at_*%# until two weeks later at the derm's office. Like you, never heard of it. Since I posted for the first time here last week it has flared about as bad as I've ever had. I use what was perscibed, Triamcinolone Acetonide cream. My dear wife also has me on Tree Tea salve by Jason. Is there anything at least a little more effective without going to Danzig or other more expensive route  ???
Title: Re: Grover's disease
Post by: jd1 on Monday May 26, 2008, 06:24:59 PM
Jupiter, I think you will find that the steroid creams, which seem to be the derms' first line of defense, have horrible rebound.  They're ok for short term relief but there are real problems with long-term use. 

I can't remember reading anything on any of these pages where anyone had long-term relief with any topical treatment.  I remember seeing a couple of articles in derm magazines where newly diagnosed grover's patients found relief with Dovonex, but those of us who have tried it - and Mepen and I used it for a year or more - found it not very helpful.  Some, myself included, found minor relief with Vit A topicals, ie Retin-A and Tazorac, but not the relief that we all want. 

Out of all of these pages the best results that have been posted have been Accutane (JRabbit and Mepen to a lesser extent) and chelating with Chemet. (Mepen, Joe, me, and a couple of others who have posted, but not extensively, so I don't remember the names).  Several have not had results they wanted from Chemet:  Sundowner, Jimbo, Drew. 

If I remember correctly, Penny found relief when she upped her Vit D3 in response to a separate health issue.  I've been told that D3 is toxic to the liver in high doses, so don't start megadosing without checking with your doc.  Kit posted that although she felt sure that her grover's was sun damage related, she found that a little sun provided relief.  Drew is approaching the disease as an environmental illness and is working on reducing his body's burden of toxins and last I heard feels like he is 70 - 80% better.   

I've read every word on these pages, and that's everything that I remember.  Pick a path, expect to have to educate your docs, and good luck.
Title: Re: Grover's disease
Post by: M@t on Monday May 26, 2008, 08:22:53 PM
Jimbo,

Check this out:

Grovitin.com

“contact us at Berlin Homeo Products”

http://www.ripoffreport.com/reports/0/300/RipOff0300794.htm

http://www.ripoffreport.com/reports/0/317/RipOff0317987.htm

Hi there JD1...

Just want to thank you for bringing this to the attention of everyone :)

Kindest Regards,

Matt C.
GMod.
Title: Re: Grover's disease
Post by: jupiter on Tuesday May 27, 2008, 12:46:29 AM
JDI:
Thanks for the heads up. I know you know...I'm not getting the results I first did with the cream. I drink moderately, like my red meat, and other BBQ'd stuff, and NASCAR. So you know, I work at a desk and field job about half time, with minor daily stress in my life. Lost a daughter in March, and a daughter in law five months before that...which brought on some bad flares.
I stay away from doctors and keep my dog away from vets if I can. Herbs are okay, but even then there are so many herb quacks I tend to be rather shy in that spectum. I've read about all the posts in this forum over the last few months, before I decided to post myself. Not something I relish doing, but this thing is getting worse.
So there you have it...maybe there's life after pre-Grovers? BTW: my name is Laurence...jupiter is way out there.
Title: Re: Grover's disease
Post by: jd1 on Tuesday May 27, 2008, 03:38:59 PM
Laurence.  Sometimes we think we have problems, or grief, and then we realize....I am so sorry for the loss of your daughter and daugther in law.  I can't imagine and don't know what to say other than that.

We share something in common.  You say you stay away from docs.  It would take to long for me to explain how uncomfortable I am in a doc's office.  When I am prescribed something, I'll take it until I figure out the alternative way to address the issue.  Sleep is an example - it was either sleeping pills or insanity.  But once the mercury burden was reduced, I was able to move to alternative ways for sleep support, and I am much more comfortable there.

All that said, you may need to find a doc to be on your team as you work through the alternatives for dealing with Grover's.  I have 2 - the derm who originally prescribed me the Chemet, and the MD who prescribed the Chemet so that I could finish that process and who practices with vits and herbs, which I use for support.  I can't imagine enjoying the improvement that I have without either of them.  And I went through many docs before I found these two.
Title: Re: Grover's disease
Post by: anndrew on Wednesday May 28, 2008, 03:27:59 AM
OK I know that this may sounds a little unusual but play along anyway.  How many people on this board can walk a straight line?  First try it with your eyes open then try it with your eyes shut.  When you are done post a response. 
Title: Re: Grover's disease
Post by: jupiter on Wednesday May 28, 2008, 02:25:07 PM
Andy: Yer right...I missed the door way.javascript:void(0);
Grin
Title: Re: Grover's disease
Post by: jd1 on Wednesday May 28, 2008, 05:08:49 PM
Can't.  I've never had any balance anyway. 
Title: Re: Grover's disease
Post by: anndrew on Wednesday May 28, 2008, 07:10:56 PM
Anyone else.  My guess is most of us can not balance. 
Title: Re: Grover's disease
Post by: grantsoo on Thursday May 29, 2008, 09:47:35 AM
Anyone else.  My guess is most of us can not balance. 
I can with eyes open but stumble with eyes closed.  That I might have trouble with eyes closed doesn't really surprise me though.
Grant
Title: Re: Grover's disease
Post by: anndrew on Monday June 02, 2008, 12:07:07 AM
So nobody else will try the straight line deal?
Title: Re: Grover's disease
Post by: mepen on Wednesday June 04, 2008, 02:32:14 AM
Okay. I tried the straight line test. Did well with eyes open, but not very good with eyes shut. Perhaps I have an advantage. I've been practicing yoga for years so I'm pretty good at balance and ankles are strong, although tonight my ankles feel tight. Now I've played along, what gives? What's with the straight line test?
Title: Re: Grover's disease
Post by: anndrew on Saturday June 07, 2008, 02:40:16 AM
Well it could indicate that you are neurotoxic.  My guess is some people would also have issues with other systems like hormone,  and immune system.  My opinion is grovers is a symptom of enviromental illness.  An environmental doctor would be the person to ask, most docs that are not trained in environmental illness would not be helpful.
Andrew
Title: Re: Grover's disease
Post by: bjb on Wednesday June 11, 2008, 10:48:26 PM
Wow! I finally figured out how to post over here.  Must be the blonde hair.  I was diagnosed last Friday with Grovers disease, asthma, and allergies.  Never had any of them before four weeks ago.  I am currently on Allegra, Zrytec and a fluocinonide cream.  I am at least able to sleep through the night now.  My scalp is somewhat under control now and so is the rest of my body.  I did cut wheat out of my diet and my shampoos and conditioner. I still have some minor breakouts. I am waiting on a chest cat scan to find out why my lungs are in such a weakened state. I am baffled as to why this all came about. Does this sound familiar to anyone else?  I live in South Florida, have a six year old, so staying out of the sun is not an option for me.  I do believe a positive attitude and avoiding stress as much as possible helps.  My rash was at it's worse when I was very stressed.  Thank you all for your postings they truly helped. I will keep everyone in my prayers.

BJB
Title: Re: Grover's disease
Post by: Collie on Friday June 13, 2008, 12:03:49 PM
I was diagnosed 2 months ago with Grover's.  I noticed that when I used a "self tanning" lotion, I would break out.  The biopsy they took was verified by two doctors as Grover's.  I actually think the tanning lotion I was using either mimicked the disease, or enhanced it.  I don't know.  What I do know is that ceasing the use of the lotion has tremendously helped in the dissapearance of the Grover's.  I do think that certain lotions, etc. "block" the pores, thus either causing Grover's or mimicking Grover's.  Just my opionion from experience.  Hope this helps some of you.
Title: Re: Grover's disease
Post by: jupiter on Friday June 20, 2008, 04:08:20 PM
All good questions Mark. I have also wondered about those things. For myself, showering seems to give relief. I tend to flare when outside in this 105 deg desert heat in Southern Utah, and removing sweaty salts from the skin helps. I still have one filling that is hg related. I was lucky to have lived 66 yrs before getting Grover's. It's seems something as terrible as this disease would be listed and tracked by the CDC. There just seems to be no place to determine how prevalent it is. We're told it's "more common" among older males, but there seems to be quite a few women with it. Perhaps a database could be started from replies to your questions?
Like Andrew, I personally know no one else that has Grover's. If you read all the posts on this blog, a certain pattern will show up, (like being solar related), but as far as cures...forget it. Again, as Andrew states, find a path. If we're lucky, we'll have it go away after a few months, until then we're some of the unknown as far as the medical field is concerned.
I've got a question, though...selenium is important in preventing psoriasis, is depleted in manufacturing semen, and therefore an unbalance is effected of a man's chemical makeup when semen is excreted. Has anyone found a link to selenium and Grover's?
Have a good day all...mind over matter (Grover's) sometimes helps, too. 
Title: Re: Grover's disease
Post by: Brendan on Thursday June 26, 2008, 08:34:06 PM
I have been a sufferer of Grover’s Disease for 2 years now.  My Dermatologist prescribed all types of medicines (some pretty potent medicines!) and I tried many alternative and OTC remedies.  Unfortunately, all of these failed to provide me any relief from the itching and scratching.  All of the paint from the corners in my house has been rubbed off by my scratching my back.  One day my wife met a Naturopathic Doctor at a meeting and they got to talking about health issues.   My wife invited the doctor to our home for a BBQ.   The doctor introduced me to a new scientific discovery called GlycoBiology.  This is breakthrough technology utilizing a nutritional formula containing essential Glyconutrients which are essential for the body’s ability to function and restore corrupted cells. Shortly after I started using the formulation, my symptoms and itching ceased!  I am not claiming that this is a cure.  What I am saying is that, for me, the use of these essential monosaccharide’s has had a tremendous, positive, and unexpected impact on me.  If you want to chat about this please feel free to call me at [phone number and email address removed--please contact this member via PM if you wish the information].
Title: Re: Grover's disease
Post by: platypus on Thursday June 26, 2008, 10:51:18 PM
I have been a sufferer of Grover’s Disease for 2 years now.  My Dermatologist prescribed all types of medicines (some pretty potent medicines!) and I tried many alternative and OTC remedies.  Unfortunately, all of these failed to provide me any relief from the itching and scratching.  All of the paint from the corners in my house has been rubbed off by my scratching my back.  One day my wife met a Naturopathic Doctor at a meeting and they got to talking about health issues.   My wife invited the doctor to our home for a BBQ.   The doctor introduced me to a new scientific discovery called GlycoBiology.  This is breakthrough technology utilizing a nutritional formula containing essential Glyconutrients which are essential for the body’s ability to function and restore corrupted cells. Shortly after I started using the formulation, my symptoms and itching ceased!  I am not claiming that this is a cure.  What I am saying is that, for me, the use of these essential monosaccharide’s has had a tremendous, positive, and unexpected impact on me.  If you want to chat about this please feel free to call me [phone number and email address removed--please contact this member via PM if interested in this information].

Why Brendan, your very first post, and oh lucky us, you have the answer to all our problems!  How lucky are we?  Why don't you just tell us right now right here exactly where we all can send you our money for this miracle substance monsaccharide - it sounds like just the sweetest thing!!!!!!
Title: Re: Grover's disease
Post by: john m on Saturday July 12, 2008, 12:27:59 PM
Hi I am new to the computor my husband has just been diagnosed with this deseased  he has been on a medication of Elocon from this Demo and Dermeze ointment. he also has prickles all over his body on getting up after sleeping and if he falls asleep through the day he gets the prickling feeling again. the pain stops if he puts hands under hot water but when the feet start a lump comes up under his foot he has had biospy and confirmed grovers some cremes work for a while but then they do not work. He was a chemical manufacturer and delt with a lot of nasty things. he has been on steriods and been in hospital for about 5 days the creme has taken the red out of it but not the itch. He also uses sorbiling cake for bathing or dove I wash his clothes in a non soap free powder. he is covered in the spots from his neck to his toes it has no afected the genitals or his butt but legs and torsoe arms has any one got any ideas I am getting quite concerned  about what to do.  John M.. (Denise) :
Title: Re: Grover's disease
Post by: mepen on Monday July 14, 2008, 01:33:21 AM
For John M (Denise)

Hi,

You say you are new to the computer, but if you are able, please try to read through all the posts from page 1 for a better understanding of Grover's.

Here are my suggestions for your husband: He should request blood tests for heavy metals -- MERCURY in particular. He may very well be mercury toxic. You said he worked as a chemical manufacturer. Dead give away there---MERCURY or another toxin may very well be in his system. When you read through the posts, you will read about a doctor in NY who has done scientific studies that link mercury with Grover's. There are ways to detox and get levels of mercury lower (drug called Chemet is one way).

The less medication your husband takes, the better. Some of the rash may actually be a cutaneous reaction to a medication that does not agree with him. (Gabapentin and barbitutates are medications that make my Grover's flare) Of course, your husband can't go off needed medications without speaking with his doctor first.

Steroids are not a long-term answer for Grover's. Good luck.
Title: Re: Grover's disease
Post by: john m on Monday July 14, 2008, 02:47:13 AM
for Mepen
Hi.
Thank you for your reply I will mention it again to the dermo. When we mentioned about his chemical involvement they dismissed it as he has been out of the business for 8 yrs. As we are in Melbourne, Australia and at the moment can only get another appointment in August so he is wearing out his back scratcher the creme does not seem to work any more, but he is still taking the steriods and putting on sorboline creme to soften the skin and using a non soap sorboline to wash with. I will ask Dr about the one that you suggested may help when I see him.
Thank you 
John m (Denise)
Title: Re: Grover's disease
Post by: mepen on Monday July 14, 2008, 01:29:02 PM
Please take time to read through the posts to understand things better. Also, do your own online research (Google "grover's") and read the medical websites and Dantzig's research too.
Title: Re: Grover's disease
Post by: john m on Monday July 14, 2008, 02:59:28 PM
for Mepan.
Hi.
Thank you again. I have been google grover's and going through all information I have downloaded Mercury as a cause from the Department of Dermatology Paul I Dantizig that you suggested that could be a cause of his problem he has allways been a big fish and seafood eater  and it seems to come out when he eats fish the other night he had oysters 2 days later the rash was in full flight. tonight he has had a bath warm in pintasle and carb soda, and I have just rubbed him down in a homeopathic pain relief and moisturising cream called simply flower power. this seems to be working even though it is not for that but it is a pain relief. I put some on a small part of him this afternoon and he had 6 hours of relief from the itch so tomorrow I will try a bit more so far so good.  Hope it works and he can get a good night sleep
Keep fingers crossed.  Thanks John M (Denise)
Title: Re: Grover's disease
Post by: anndrew on Monday July 14, 2008, 03:51:25 PM
John, if you visit Danzig I would also visit a Doc in New York Tom Bolte.  They don't know each other but are within a couple blocks.   Tom found a chemical in my body causing my Grovers.  Its easy to check for things like that with blood and urine test.  If you want to use your doc I would check into Accu-chem lab.  Check their environmental panels.  If its chemical then the best doc in the world is William Rea in Dallas Texas.  Since he worked around chemicals I would get the test!
Andy
Title: Re: Grover's disease
Post by: anndrew on Monday July 14, 2008, 03:55:16 PM
http://www.accuchem.com/tox/testpanel.htm

Chemical test
Title: Re: Grover's disease
Post by: cdale21 on Tuesday July 15, 2008, 12:47:14 AM
G'Day all,  I have not posted for a couple of years but I keep checking this site every now and then. I have been free of grovers for about two years but I am always afraid of its return. I still follow my routine, no seafood any more, wash my clothes in 'Softly' I use a wooden spoon to apply moisturiser on my back( I just use home brand skin repair) I use curash for a deoderant and on the areas that sweat. I found curash dried out the grovers (available from Woolworths in Australia) I had my mercury checked and it was very, very low (I cant remember the value) maybe this was why my grovers only lasted a couple of years. I hope this may help  John. M  .....      Col
Title: Re: Grover's disease
Post by: Dondi on Tuesday July 15, 2008, 02:09:39 AM
Hi I was diagnosed with grovers 5 months ago had been itching for several months before.  It took four visits till the Dr biopsied me,  I had no idea what grovers was and the doctor didntseem to have much info for me either.  He did a whole blood work up though and xray besides biopsy.  biopsy said spongiosis, acantholysis, dyskeratosis, and a superficial pervascular mixed inflammatory cell infiltrate.  Dr. had been telling me it was winter itch, but I had red bumps and vesicles on my arms, back, stomach, legs, buttocks.  Now I just itch eveywhere but the bottms of my feet.  I had papules in my head and my beautician told me she could see them.  I have a slightly elevated esonophil and auto esinophil level but not by a lot.  It also showed up that I was very hypothyroid.  When my endo doc tested my thyroid and TPOab  I tested positive for anitbodies.  My ANA was negative.  I did see allergist immunologist who checked me out and I tested negative for food allergies and envormental allergies, he said he has seen a few men with grovers no women before, and said it really was little understood, but that thyroid patients with positive antibodies (some anyway) do break out in hives and rashes.  I do think I also break out in hives.  I also get like a goosebump look and then it is overwhelming the itching.  I have tried 3 diifernet steroid creams he wanted me to try steroid pills, but I am diabetic and having a hard time with elevated glucose levels since this has been going on.  prednisone would really make it worse.  I have tried a course of antibiotics, DOryx, but he would only give me 2 weeks.  It did help clear up areas I scratched open.  It seems like nobody really knows what to tell me to do.  Aloe has helped somewhat and vinegar diluted with water also helps.  Im trying to find more natural things then the steroid creams.  I have been told the thyroid problem and the diabetes is making the itching much worse, they actually told me some people have grovers but dont itch!??!    I am so scarred up and a mess.  Im 51  woman fair skinned and every mark shows.  They said it clears up in 6-12 months but the feeling I get is this is never going away.  I was told it is not contagious, is this true?  Has anyone else had thyroid problems come up in testing?  THe derm Dr.  told me maybe it would go away if my thyroid levels were leveled out, and my diabetes got under better control, but it was under better control before. 
Title: Re: Grover's disease
Post by: jd1 on Tuesday July 15, 2008, 04:43:22 PM
Dondi, welcome.  In response to your question....I just found out that I am slightly hypothyroid.  I'm trying different things before I take the meds.  I don't know if I have the thyroid antibodies.  I will have that checked next time.  But I have had a very high ANA in the past, which came back negative after chelating for a while.  It's not been checked for several years.  I also wondered if it could be related.

To echo Mepen, you might want to start reading from the beginning.  There's lots of information here, at least some of which you will likely find helpful.
Title: Re: Grover's disease
Post by: john m on Wednesday July 16, 2008, 05:30:53 AM
Hi. I have been using a creme Elocon ointment worked for a few days. I am also on tablets Steriods and Deptran and rafen 200. (ibuprofen)  also Dermez Ointment  the Elocon I have given the flick but am still on the other medication as well as a creme my wife got for my shoulder it is called simply flower power so far this is working i have been using it for 3 days so far it takes the itch and pain out  I now have it on my face head and genetals this she puts on after I have a warm bath with pintasle and Carb Soda or a shower with sorbaline moisturiser . it gives me relefe for about 6 hrs. I have also taken advise from the web site about mercury and am in the middle of organizing a blood test for that and other chemicals that may be in my body. As we live in Melbourne Australia I can not or afford to travel to America as we are only pensioners now I am 67yrs have always been fit but spent lots of time in sun I was a jockey in Queensland and spent a lot of time on days off fishing so sun damage sounds about right and so does the chemicals also I have eaten quite a bit of shell fish and other fish. hope this may help  will post results from the Dr. when I get the results.   John M.
Title: Re: Grover's disease
Post by: Dondi on Saturday July 19, 2008, 12:57:49 AM
Hi JD1  I was subclinical hypothyroid for a few years and my endo doc didnt make an issue out of it because I had a heart attack. He didnt really want me to take medication for it.   I didnt realize that in fact a undertreated thyroid problem could cause heart issues.  I had been a bit itchy off and on and also on occasion had rashes and vesicle outbreaks that I couldnt figure what it was about.  It started getting more and more uncomfortable and then it just fully came out right after the holidays.  I had been under a bit of stress and really was ready to just blow my stack but I kept it down under control.  By the begining of Jan.  I was full blown itchy, bumpy, just one big scratchy mess.  The in March I found out about the grovers and the thyroid and by the following month the thyroid levels had tripled.  So I was way beyond a subclinical case.  Im just curious as to whether grovers is indeed a sundamage related  problem, or is it somehow related to hormone levels being off somehow. the thyroid controls so many things in our bodies.  But I have also had my share of  some seriously bad sunburns.   I just wish I could make it stop already but I am sure all of you feel the same way.
Title: Re: Grover's disease
Post by: Dondi on Saturday July 19, 2008, 01:10:13 AM
Hi John---     I have tried to stay off the steroid creams as much as I can, but sometimes I just need to use a little.  My Dr  did suggest prednisone months ago but I was afraid my diabetes would really get out of control.  My daughter recently gave me a honey soap that is full of shea butter and it is easy on my skin, Im just hoping it continues to help.  I find that something helps for a while and then it doesnt help anymore.  What is pintasle?  and sorbaline, I ve never heard of them.  Im in New York,  so I guess they have different names in Austrialia for thing shere called something else.  I wonder how many people have tested positive for mercury?  As for fish or shellfish Im not big on seafood, although I occasionally have some.  Well I hope you find some answers for yourself. 
Title: Re: Grover's disease
Post by: ColoradoSue on Saturday July 19, 2008, 05:06:06 PM
Hi All,

I am so glad to see a forum for Grover's.  I was just diagnosed by biopsy yesterday.  I have read through all the discussions and it seems that there is no magic bullet.  I am 61, white and female - don't seem to fit the stereotype, but neither do lots of you.  I live in Colorado, definitely near the sun and was a tanner in my youth, but have been careful for the last 30 years.  One thing I haven't seem mentioned is that I don't sweat - not at all.  I quit using deoderant several years ago as I didn't need it; I thought not sweating was one nice byproduct of menopause.... I am wondering if the fact that I don't sweat (even after excercising) has something to do with the Grover's.

So far(before I had a diagnosis, just an itchy rash for the last 4 months) I have tried Olux-E(spray steriod cream) which does calm the itching for several hours at a time and Triamcinolone cream (prescription) which also calms the itch. I slather the cream everywhere and am more careful with the steroid. My dermatologist also suggested Benadryl at night and Zyrtec during the day.  I am not sure how much they are helping.  He wants to try a steroid shot Monday morning; I am not sure that is a good idea. I think I may be his first Grover's patient; he doesn't seem to have many ideas.  He also mentioned a tanning salon (definitely won't go for that).

My main area at the moment is my scalp.  I have several places that have become large lumps and continue to itch.  Has anyone found a shampoo that works? 

I am thinking I am ask him for something else other than the steroid shot.  I have seen mention of Soriatane and Pintarsel.  Any ideas?  I am interested in diet suggestions, but it seems that different things affect different people.  I am already gluten and lactose intolerant.  I don't know how much more I can limit my diet...
Title: Re: Grover's disease
Post by: Dondi on Tuesday July 22, 2008, 07:22:32 PM
Hi Colorado Su  Sorry you have grovers,it sure is annoying.  I also had itching in the scalp, and flaking which doesnt seem to match all the places and symptoms they mention with grovers ( so it seems the experts really dont know much)  my hair person saw the raised reddish purple  bumps on my scalp .   But the dermie had given me a script for Loprex I think its called its for sebbhorhe(sp?) but you know how they give you meds indicated for one thing for other things.  It took a couple of months for that to end and thats because the bumps went away.  The olux also comes in a mousse foam, if he hasnt given you any ask your DR if he has samples of the mousse at least that you can use a little easier in your head but dont use a lot, and dab it on when your hair is dry where it itches.  I have the olux spray and foam, but all these steroids really dry you out so I try non steroid stuff as much as possible.  The steroids are for the most desperate times.  I also was reluctant to have them pump me up with steroids.  He probably mentioned tanning beds cause some Dr.s think controlled photo light helps but Im not sure tanning beds is quite the same, someone correct me if I am wrong.  Some bloggers on here have mentioned getting tested for mercury and what I liked to know is where do you go to have this done? 
Title: Re: Grover's disease
Post by: ColoradoSue on Tuesday July 22, 2008, 10:53:17 PM
Thanks for the ideas, Dondi.  I said no to the steroid shot, but am still using the steroid cream on the worst spots on my body.  The dermatologist gave me shampoo with steroids, but I really don't like using it.  Mine seems to be calming down a little, if I could just find some non steriod stuff for the places on my head.  Scalpicin (OTC) helps a little but not much...

I have read the posts on mercury.  I gave the info to my dermatologist, but he wasn't very interested- he said it was an alternate medicine thing.  Not sure about that since the doctor is from Columbia University.  Wonder if I can ask a naturopath about it?   
Title: Re: Grover's disease
Post by: jd1 on Wednesday July 23, 2008, 03:00:04 PM
Wow that makes me so mad.  It is not an alternative health thing.  Dr Dantzig is a mainstream doc in NY and Columbia University is a well regarded institution and the research was published in a reputable medical journal, and these docs are so invested in already knowing everything that they can't try anything.  As someone who has benefitted greatly from Dr Dantzig's treatment, (seriously, the front of me is clear and my back runs about 80 - 95% clear and I had this disease in violent form for 10 years) and who went to many docs before I found one who was willing to treat me, I strongly encourage you to move on to a dermatologist who is willing to work with you and not against you.  Good luck.
Title: Re: Grover's disease
Post by: schneid on Thursday July 24, 2008, 08:54:37 PM
Hi--I am a "newbie", but pretty desperate to get answers about what is going on with my skin.  Two years ago I broke out in what looked like flea bites on my legs and arms, and an itchy scalp---initially, nothing on my trunk.  The first dermatologist told me it was mites and treated 3 times for that until I insisted that he biopsy something.  He did a biopsy and the histopathology report indicated that I had acantholytic hyperkeratosis, most consistent with Grover's Disease--Was told nothing could be done and it would go away.  Later, it started happening on my trunk also.  Went to a second dermatologist who thought it was stress and refused to biopsy anything--although I was broken out all over my body, including the palms of my hands and going nuts.  After two years putting up with this (it is now confined to my scalp--but the itching is severe), I went to dermatologist #3, who also thought it was stress, but gave me Olux foam to apply to my scalp---it did not help.  I am now into the fourth visit with this last dermatologist and he says he has no idea what it is, and because it is limited to my scalp, he does not think it is Grover's Disease and informed me that my symptoms do not fit anything he has ever seen--he wants me to go to UCSD for Dermatology grand rounds to see if any of the 40 or so Dermatologists there has any idea.  I'm pretty lost and wondered if any of you have experienced a similar sequence of outbreaks?

Thanks so much for listening to me and for any information that you can provide,
Elaine
Title: Re: Grover's disease
Post by: jd1 on Thursday July 24, 2008, 09:36:08 PM
Elaine.  What a nightmare.  I am so sorry. 

That doesn't sound like classic Grover's.  Classic is on the truck (although at least one person here had it start on arms and legs).  I've never seen anybody say anything about having it on the palms of their hands.  We have a couple of people with itchy scalps, but none where it is limited to the scalp.

Watch out for grand rounds and nail down the difference between your expectations versus what will really happen.  I know a couple of people who thought that they were actually going to get thoughtful help.  Instead, they were simply specimens for the students to see the disease.

One person here is in the process of redetermining what he has.  It turns out the original lab wasn't such a great lab, and after a couple of years of thinking he had Grover's, it turns out that he may  have something else.  Do you  have confidence in the lab that made the original diagnosis?  Personally, my first set up biopsies came back that it could be one of three diseases, and that lab said to rebiopsy and send the specimen to USCF.  We did that, and USCF declared Grovers.

I hope some of this is helpful.
Title: Re: Grover's disease
Post by: socalmom on Friday July 25, 2008, 09:04:24 PM
Hi--I am a "newbie", but pretty desperate to get answers about what is going on with my skin.  Two years ago I broke out in what looked like flea bites on my legs and arms, and an itchy scalp---initially, nothing on my trunk.  The first dermatologist told me it was mites and treated 3 times for that until I insisted that he biopsy something.  He did a biopsy and the histopathology report indicated that I had acantholytic hyperkeratosis, most consistent with Grover's Disease--Was told nothing could be done and it would go away.  Later, it started happening on my trunk also.  Went to a second dermatologist who thought it was stress and refused to biopsy anything--although I was broken out all over my body, including the palms of my hands and going nuts.  After two years putting up with this (it is now confined to my scalp--but the itching is severe), I went to dermatologist #3, who also thought it was stress, but gave me Olux foam to apply to my scalp---it did not help.  I am now into the fourth visit with this last dermatologist and he says he has no idea what it is, and because it is limited to my scalp, he does not think it is Grover's Disease and informed me that my symptoms do not fit anything he has ever seen--he wants me to go to UCSD for Dermatology grand rounds to see if any of the 40 or so Dermatologists there has any idea.  I'm pretty lost and wondered if any of you have experienced a similar sequence of outbreaks?

Thanks so much for listening to me and for any information that you can provide,
Elaine
Title: Re: Grover's disease
Post by: ColoradoSue on Sunday July 27, 2008, 02:32:03 PM
Back again.  My naturopath is willing to explore the research.  She can do the mercury testing and administer the chelaton.  Any suggestions/tips?

The spots on my back and legs are continuing to sprout up, but it's my scalp that is driving me crazy.  I hope the chelation will help.

I am also very interested in the connection to macular degeneration that Dr. Dantzig found.  My mother has age related macular and is blind.  I would sure like to avoid getting it.


Title: Re: Grover's disease
Post by: Dondi on Sunday July 27, 2008, 11:50:46 PM
Hi everyone!    I wanted to add something,  after I had started to itch my husband also started having itching.  Of course the derm doc thought ok mites but mine never had any indication of mites only grovers, but my husbands and please bare with me rather long, biopsy report said spongiotic dermatitis with eosinophils, superficial to mid dermal.  note: The histopathologic differential diagnosis includes an eczematous dermatitis, a spongiotic drug eruption, scabies and a arthropod bite reaction. mutilple levels were examined and do not reveal evidence of focal acantholytic dyskeratosis, however, Grovers disease cannot be excluded.  If this process persists an additional biopsy may be useful.  Well I read this and thought 1st off the Dr. gave my husband permethrin in case it was scabies and he used it twice all over.  I never had any mention of scabies, and I was under the impression the grovers was nothing contagious.  Further he said with me that my diabetes and thyroid problems probably made the grovers break out worse then maybe it would have been.  I have had out breaks before just didnt have a name for it.  Figured it was an allergic reaction.  My husband scratches the heck out of himself with a scrub brush literally and takes steaming hot showers, cause he said it makes him feel better and I keep telling him your drying out your skin and making it worse.  I dont know why I say anything cause Im just as miserable and can understand his frustration.  I actually went as far as to try the scabie med and it is formaldehyde in a tube.  I itched so bad after.  Apparently my husband said that the Dr told him he didnt believe he had scabies/mites anyway and that he thought he had an allergic reaction to the cream.  Although that didnt explain the biosy report mentioning a bite reaction, unless the scratches he has  are of course from his horrendous scratching.  Anyway the point is 1st, maybe I need to go to another Dr altogether and have him biopsy me right off the bat (if they will)  cause Im tired of going and feel like Im wasting money.  The other Dr said the biopsy lab was very reputable but I was scratching for over 2-3 months before he finally got around to biopsing me.  Maybe these are not accurate after you have irritated the heck out of your skin and have put on tons of steroid creams.  Possible this can cause a change in your skin.   I have been trying really hard to not use the steroids but lately have been using some olux out of desperation.  I cant help noticing that my skin   seems to be changing over time and I wonder if the red marks you see ina classic case is constant or ddoes anyone find that there skin has become dry and small bumps, I have burning  and intense itching off and on.  I dont know anymore if I am developing fungus on top of this or as a result of  the meds they have given me.  Or is it really worse because of thyroid problems.  My husbands biopsy I brought up cause I was just shocked they mentioned grovers at all.  What does anyone think of this?   
Title: Re: Grover's disease
Post by: schneid on Tuesday July 29, 2008, 01:18:14 AM
Hi jd1,

Thanks so much for responding to my first post.  I agree with all of your concerns, etc.  The lab that made the initial diagnosis appeared to be less than first rate.  They just had a gross description of the specimen, no description of the histopathology findings or of any description of the cells--just a conclusion that it was consistent with Grover's Disease, but it also mentioned Darier's Disease and one other.  I have always thought that something should be re-biopsyed (sp?), but have never been successful in getting any of the other dermatologists to do it.  I have an appointment this Thursday and I am going to really push for a biopsy, before I trapse over to UCSD and feel like a specimen myself.  I'll post something after Thursday.  Thanks again for being responsive--your advice and feedback were very helpful and made sense.  I will  post anything interesting following my Thursday appointment with the dermatologist.

It has been a true nightmare--no one realizes what it is like to have severe itching 24 hours a day.  I couldn't sleep at all last night because my scalp was itching so badly that I spend the whole night scratching it --which I know I shouldn't do, but after 2 years and no improvement, I am not the most compliant patient!

Thanks again,
Elaine
Title: Re: Grover's disease
Post by: socalmom on Tuesday July 29, 2008, 03:55:31 AM
Dondi,

I was also biopsied and told I had Grovers in March 08.  I am a 44 year old female. Let me share my story:

My son had scabies in Jan of 08 and we treated him, twice, in early March 08. (My entire family, including me, treated just in case he gave it to us even though he's off in college. We did see him periodically during the school year) (Quick note: we visited 6 derms and allergists who never diagnosed my son's scabies outbreak.  They ALL said it was chronic urticaria and we would never know what he was allergic to.  Shoot me. He finally self diagnosed and was right.  It went away.) Then I came down with this crazy, itchy rash in the end of March. (I've always had a heat rash...but very slight) I thought I must have managed to get the scabies even after treating. I went to our derm and she told me that it wasn't scabies and confirmed Grovers with a biopsy. I couldn't believe the coincidence of having a rash but not having scabies.)  Now, July 08, my husband has had a rash very similar to mine. (We do not have any classic signs of scabies but BOTH of us now have the signs of Grovers)  I give up!  I'm thinking I now need him to be biopsied.  My son was biopsied in June after he kept getting raised welts around his pantline.  The lab results said that there was an insect reaction but no mites and the derm said he probably was still dealing with the aftereffects of the scabies from a few months ago and that his skin was on high alert.
So, my son occasionally has welts come and go with heat, I have a rash on my stomach (I'm a runner and I run 8-9 miles every other day and spin 3 days a week.  My workout tops are always WET) and my husband has a rash on his stomach similar to mine.  Thank goodness my other son has never had anything! 
Any thoughts?
Has anyone found a derm that wants to deal with skin disorders and not give botox or laser treatments? Elaine, (schneid) I live in South Orange County so if you find someone through UCSD would you refer them to me?  I need to pick someone's brains and stop the rash madness going on in my home!
Title: Re: Grover's disease
Post by: Dondi on Tuesday July 29, 2008, 05:24:43 AM
Hi Elaine    Well your story does sound similar,  and I uderstand  the frustraton.  Honestly I would have appreciated my husband telling me he was also feeling itching when I first was having the problems and of course the DR was asking me if anyone else in myhome was itching too.  When I brought my husband in and he said how long he was itching I think the Dr thought something was wrong with me and I wasnt being upfront with him, but he insisted that the place he uses for biopsies was reputable and a mistake was unlikely, and he said since I also had diabetes and thyroid problems this was likely the cause also.  He told my hubby he couldnt still have scabies if he did have them at all and that he suffered a reaction, as the biopsy mentions a drug eruption.  yet it mentions scabies besides eczema dermatitis.  Thats why I think I may have to see someone else.  My insurance comapny must love me cause I have been seeing a endo doc for my diabetes and thyroid problem once a month since April, and now need surgery on a badly imflamed nerve as a result of carpal tunnel , of course all I can think of is one less arm and hand available to me to scratch.  my son is also itching now and I am telling him he has to go to a different dermie and tell him his parents are itching so that hopefully he will just do a biopsy.  I dont live in Calif.  I gather you do, Im in New York.  I hope you find someone to help you too.  Of course there are far worse things in life then this but sometimes I cant help wondering how long can we put up with this, its horrible feeling like this.  Im always searching online for answers and then you come across these people who have such terrible conditions and you feel like Im such a whiner.  But it is miserable.  I have heard of people being diagnosed with grovers and then it being partly  or completely scabies/mites  dont know why though?!  I just was shocked when they said my hubby may also have grovers as it wasnt put to me as being a contagious disease nor have I heard anyone else saying their house mates also possibly having it.  Let me know what your progress is and Ill let you know ours here.  Good Luck. 
Title: Re: Grover's disease
Post by: socalmom on Tuesday July 29, 2008, 06:28:21 AM
Dondi,

Sorry, my post was confusing.  I'm socalmom and I was including Elaine (schneid) in my post to you.  She lives close by and I'm looking for a referral for a DR.
I just found a link between scabies and Grovers.  The best article I've found.  It says that scabies can set off residual dermatitis and postscabietic pruritus (ie: Grovers) I think this is what initiated my Grovers.  Please take a look at the article.
www.emedicine.com/DERM/topic382htm#section 
I think I have incredibly sensitive skin and the scabies brought out an underlying issue I've always had, but made it full blown.  I need to speak with a Derm that specializes in skin disorders.  Does anyone have a recommendation of someone? I'm scabies free but still itching with Grovers.

Thanks!
Title: Re: Grover's disease
Post by: bunnie on Tuesday July 29, 2008, 08:58:19 AM
Hi everyone, I don't wish to intrude, especially on this board, but I just wanted to maybe help you with the scabies thing and the link you left.
 Scabies as you will know is highly contagious. The mite Ascarus Scabiei burrows under the skin and lays eggs which appear as black scratches initially. The mite is active at night apparantly and the itch is at its worst then usually. It must be treated medically, everyone in the family, everywhere, from the neck down. However if not treated immediately, that with the constant scratching can often make scabies appear like something else, making diagnosis difficult upon appearance. However a really good derm will spot it straight away.
I do not have Grovers, but I understand the cell processes of why it occurs, because a part of those cell processes occurs in my condition.
As most cases from studies have shown, Grovers patients also suffer from Atopy, resulting in various Atopic conditions, depending on the individual. Atopy is an inherited mutated gene/genes, predisposing the person to ever having a hypersensitivity  reaction to anything really, specific to you, and it tends to run in families. The pathogenic result of that hypersensitivity in you is the disease manifest. Usually the result is self-limiting, but it can take years in some cases to disappear, as with drug-induced autoimmune conditions for eg.  However the majority are idiopathic,( idio self- pathic -suffering) of no apparant specific cause, and tend to last longer.
Autoimmunity too is a mutated gene/genes, predisposing the person to ever having an autoimmune response, but in the case of Diabetes, Psoriasis , etc there is an inherited mutated gene to the disease itself.
Dondi, you say you have Diabetes, this then comes under that latter category, but the majority of cases who have the predisposition to autoimmunity, also tend to have the predisposition to Atopy! 
Anybody with the autoimmune  predisposition, can have more than one autoimmune response, resulting in something entirely different, depending on various factors, which I have related on my posts on the subject on other boards.
Scabies most certainly can stimulate this Atopic predisposition in a person. (or an autoimmune condition) It is an external "invader" and as the body responds to that invasion , (to keep it simple) these predisposing genes can be stimulated , resulting in the malfunctioning of all the subsequent immune cells within that abnormal response, the pathogenic result of which in you is Grovers. (it could be something entirely different in another person, or the scabies or whatever may not stimulate a response at all, even though you may have the genes predisposing you.) It takes a combination of multi genes and factors to result in the condition manifest.
Both predispositions wax and wane in severity and can have varying periods of remission, some lasting many years. My remission lasted 18 years for eg. Thyroid troubles too can stimulate an abnormal response to either predisposition, due to hormonal dysregulation.
Was it on here that somebody's derm said that the mercury hypothesis was an alternative approach? Well he was right! It is seen by the medical field at present as just that, a series of ancedotal hypothesis, there is no evidence that has undergone meta analysis to prove otherwise, and that is why, it is seen Globally by the medical field as alternative. I am just explaining the reason why the derm said that, nothing more.
Anyway just trying to help.
Bunnie
Title: Re: Grover's disease
Post by: Dondi on Wednesday July 30, 2008, 10:09:02 PM
Hi SoCal    Sorry its probably my mistake, I should have looked at the post name closer.  I have tried to fully the access the site you sent, I get to it but then can not get to read anything other then the what they have listed,keeps saying error not found.  I may have read it, in the past, though.  I cant say I have found a lot of sites on the issue of grovers and mites/scabies. 

Bunnie--  You seem to have a great understanding of all this stuff, cant say I do.  I did see a allergist/ immunlogist about 6 weeks ago even though the my dermied thought it was a waste of time.  He said I had no enviormental allergies and did mention IGE or IGA (ATOPY?) and said I wasnt showing a reaction or symptoms of this, sorry I know this may be showing a little ignorance on my part, cause I do have a lack of understanding.  From the start though I have never showed signs of a scabies/mites  (whatever you want to call it)  infestation other then itching, no black lines nor white curvy lines (tunneling) under the skin or in the webbing of my hands or feet, nor has my husband.  I have looked at as many pictures as I could and it doesnt look like it.  But the fact that we started with the itching is what brought it up at the doctors.  DR had my husband try the cream  twice  and figured well if its that  it should make it let up but hubby had a reaction to the cream.  I am assuming that when they do biopsies they put down what they think  may be causing the problem?!  So we were all a little surprised they mentioned  scabies and a bite cause he had already used the cream twice before they did the biopsy but did note he had a reaction from a drug ( the cream).  I used it cause he figured he would try it again and so we both used it from top to bottom and it didnt help either of us.  My son has been itching and my daughter also  a little.  She is a gym rat and is getting it in places where there would be rubbing and my son has to wear a suitand is dressed from head to toe all day in the heat with a jacket on, so my guess is he has heat related rash of some kind, hopefully.  My skin is without a doubt sensitive and my family has had some autoimmune issues, thankfully nothing terrible as some have trouble with.  Honestly after some of the things I have seen online and heard I guess I count my blessings and feel actually whinny.  Its just you can take so much discomfort.  I appreciate your input, I wish I  had a better understanding.  The allergist actually had told me the biopsy is probably right and it is what it is and hopefully I would be in that number who has it for 6-12 months and then be gone.  Since he has hardly dealt with any grovers patients and so far none of my regular doctors know what t is I feel a little like a fish out of water.  I honestly hope grovers isnt my husbands problem too, I would be shocked as no one has ever mentioned it being contagious. One of the things they said was eczema dermatitis and they also didnt rule out grovers as in addition to the exzema. I just dont now what to think or believe anymore.
Title: Re: Grover's disease
Post by: bunnie on Thursday July 31, 2008, 12:03:15 AM
Hi Dondi, I think the scabies thing has confused you and the doctor! To be honest a GP hasn't got the specialist skills of treating skin, thats why we have derms! They inevitably think of scabies and other mite infestation when they see a rash they don't see regulary. I was just pointing out that if it was scabies it could trigger off this reaction in you as you already have diabetes, and may also suffer from Atopy. Of course there is no reason at all why hubby may not suffer from atopy , and your kids too because it does tend to run in families. Your husband and his blood line are different of course, but if they suffer from atopy then of course his children possibly carry the predisposition , as well as from you. Although not impossible it would be rather unique for both of you to have Grovers , because it is not contagious at all.
Quote
He said I had no enviormental allergies and did mention IGE or IGA (ATOPY?)

IgE and IgA are antibodies, or otherwise called Immunoglobulins. These are naturally produced whenever there is an immune response to an invasion by something that is not of the body, all of which are known as antigens. or if something not of the body but normally harmless to it like pollen for eg, it is called an allergen.   All cells carry a marker of "self" in animals and in humans. Anything in the body that does not carry this marker of self, will be attacked and destroyed. Antibodies  are an army of soldiers really!  They each carry a specific "key" to fit exactly the "lock" on the invading antigen. This action is called an "immune complex".  (In some conditions these immune complexes amass together like a veil, and move throughout the body, depositing in the skin in some cases and causing inflammation and damage.) They bind to the antigen  so that it can be destroyed . (See pics on my blog) They each have a specific job to do.
However if there is an abnormal immune reponse to external normally harmless things this is known as atopy, and the predisposition to this occurring only occurs in people who carry the mutated genes, with this coding in their DNA. The same applies to autoimmunity but this abnormal immune response can be stimulated by something of "self " like hormones for eg. as well as out of the body factors too. This abnormal immune response results in abnormal antibodies being produced to "self" antigens, therefore destroying self proteins. Everything else is malfunctiong and it cannot switch off.
There are 5 classes (Isotypes) of Immunoglobulin, (antibody) based on their structure and biological activity.
These are, IgM, IgG, IgA, IgD and IgE, plus 4 subtypes of IgG (IgG1-4), and 2 of IgA (IgA1, IgA2).
Different types Play different Roles in Immune defence.
IgG, (immunoglobulin G), works efficiently to coat microbes, speeding their uptake by other cells in the immune system. IgG is the most abundant class of antibodies found in blood serum and lymph and active against bacteria, fungi, viruses, and foreign particles. Immunoglobulin G antibodies trigger action of the Complement System. This is the first to meet with invasion and is very deadly.
IgM, is very effective at killing bacteria.
IgA, concentrates in body fluids, such as tears, saliva, the secretions of the respiratory, and the digestive tracts, and guarding the entrances to the body.
IgE, whose natural job probably is to protect against parasitic infections, is the villain responsible for the symptoms of allergy.
IgD remains attached to B cells and plays a key role in initiating early B-cell response.
Apart from having a name, these antibodies also have specific symbols.
Well it is a huge subject Dondi, and complicated, however I find the whole immune system its structure and function fascinating, it is utterly amazing what these cells can do. You can even see film of these processes on youtube! I left a link to my blog somewhere on this board. If you scroll down to Cells of the Immune System, it explains everything there and scroll further to Disorders of the Immune system it explains hypersensitivity, allergies and autoimmunity on there. Don't try to read it all at once it will do your head in! I'm sure you will understand the gist of it at the very least. It is half the battle when you understand why these things happen and the underlying problem.  My son has just had such a reaction himself he suffers from atopy, and it was a bad rash very itchy, but hopefully self limiting.
Bunnie
Title: Re: Grover's disease
Post by: socalmom on Friday August 01, 2008, 04:55:34 AM
Oh my goodness Bunnie...i can only imagine what you do for a living! Like Dondi, I am such a layman at this, I can barely keep up with what you're stating. It sounds like Dondi and I have very similar stories, yet i do not have diabetes. My husband is itching and my son has reoccurring welts around his waistline on his pants. My itching and rash is increasing...I WILL NOT GIVE UP WORKING OUT! (yet I am paying for it) I agree Dondi...compared to so many stories...I have it so easy ...yet....metally after experiencing the whole scabies thing with my son... and his roommates... and his college athletic team...oh my gosh...will it ever end? I have been pretty stressed out with trying to control this thing.  Everytime we itch I think..."Is it scabies?" or "Is it Grovers?" I'm pretty sure we're all scabies free but believe me, it does do something to your psyche. Really, I thought I could just grin and bear this yet everytime I sweat...it gets worse. I'm more than a little uncomfortable.

I got a copy of my biopsy results today.  Bunnie, hopefully you can tell me what a comment means.  The diagnosis says: FOCAL ACANTHOLYTIC DYSKERATOSIS CONSISTENT WTH GROVERS DISEASE (see comment) COMMENT: Clinical correlation is essential. (I can pick apart the meaning of the comment but what the heck are they actually saying?)

Thank goodness for you all...I would never speak with friends or family about this...you're lifesavers!
Title: Re: Grover's disease
Post by: bunnie on Friday August 01, 2008, 03:30:38 PM
Hi all,
First let me apologise for another long post. There is no short simple way of explaining these processes, because these cells interact and communicate with one another by chemically induced signalling, to effect another function of the immune response. ( I don't mean enviromental chemicals, but  totally different natural cellular chemicals of the body)Add to that a dysfunction, then the explanation is complicated. To make matters worse , it is even more difficult to explain simply, if the people who are reading do not understand the names and function of each of the cells which make up the immune system. That is why it is important to learn the structure and function of the cells of the immune system first. You can if interested learn from this overview here...
http://wassail-allthatilove.blogspot.com/
http://www.niaid.nih.gov/publications/immune/the_immune_system.pdf

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i can only imagine what you do for a living!

A nurse, Lo-on-g retired! Please do not be too critical at my endeavours to explain, I am not a pathologist! I only wish to help with the understanding, because a huge part in the distress of coping with these diseases is the frustration as to why we have them in the first place. The stress of which in some cases exascerbate the situation. If you read the following slowly and carefully you will understand it. I have tried to explain everything simply.
I did send a great article summing up on all that follows to Anndrew when we were pm-ing, but my in and outbox was full, so I had to empty it and lost the bloomin' article. If you have it still Anndrew in your inbox , could you send it back please so that I have a copy?
socalmom....
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yet i do not have diabetes.
you do not have to have diabetes to have this predisposition. However if you have Grovers you most certainly do have genes which carry in their DNA the predisposition to having an adverse immune response or an allergic/hypersensitivity response, which results in the malfunction of immune cells produced within that response, and causing (in you) loss of cohesion of desmosomes and acrosyringeal dysfunction. (Grovers)
Explanation of the biopsy...
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FOCAL ACANTHOLYTIC DYSKERATOSIS CONSISTENT WTH GROVERS DISEASE

the above gives the faulty cell process by which Grovers is determined.

FOCAL
A localized area of disease
ACANTHOLYSIS (Ac -an-th-olly-sis
the loosening, separation, or disassociation (loss of cohesion)of individual prickle cells within the epithelium from their neighbor, often seen in conditions such as pemphigus vulgaris and keratosis follicularis.  (this occurs in my condition)
DYSKERATOSIS   dis-ker-a-toe-sis
abnormal, premature, or imperfect keratinization of the keratinocytes

Here is an excellent link which shows what this is....
http://www.eucerin.co.uk/skin/skincell_2.html
Note from that link....
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The epidermis consists of up to 90 percent  keratinocytes, the actual epidermal cells, that are held together by what are called desmosomes. The epidermis is differentiated into five layers:

Note the Prickle-cell layer (stratum spinosum)
It is these cells in this layer that have loss of cohesion.

As to the cause of acantholysis in Grover’s disease.....from the link  below
http://www.mayoclinicproceedings.com/inside.asp?AID=2529&UID=
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Electron microscopic studies demonstrated that dissolution of desmosomal attachment plaques  is the likely cause of acantholysis in Grover’s disease.
(Note from above that the epidermal cells are held together by desmosomes. The "attachment plaques"  define the area of the desmosome and there are quite a few components to these attachment plaques, each with a specific job, and each acting as a bridge between one another. One of these components of the  desmosomal attachment plaques is the "central dense layer"  and this is the site of adhesive reaction, which forms the basis of the mechanical joining of cells by desmosomes)

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Immunohistochemical studies showed the loss of intracellular desmosomal proteins (desmoplakin I and II and intercellular desmosomal protein desmoglein)(the names of the proteins) from the desmosomes and their diffusion into the cytoplasm of the acantholytic cells. Previously, CD44 was reported to have a normal pattern on the surface of acantholytic and periblister cells, an implication that desmosomal adhesion molecules may be more important than nondesmosomal adhesion molecules in Grover’s disease.


Grover (whom the condition is named after)  reported statistically significant associations between transient (considered as being false as some are persistant)  acantholytic disease and asteatotic eczema, allergic contact dermatitis, atopic dermatitis, and irritation from adhesive tape; these relationships imply that nonspecific irritation and inflammation may facilitate the development of Grover’s disease.
These are Atopic conditions. Atopy runs in families, and occurs through having mutated genes predisposing the person to ever having an abnormal immune response due to a hypersensitivity to something. that "something" depends upon the individual. The cause which triggered the hypersensitivity in one person (the pathogenic result of which in you is Grovers) may be a different in you, and from person to person. That is why it says "non-specific". Also this same hypersensitivity can result in a totally different pathogenic result (a different condition)in another person.

Note from this link my notes in blue
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The predisposing conditions,(refering to the genetic predisposition) site of involvement, and relapsing nature of this disorder (all atopic and autoimmune conditions wax and wane in this way)may implicate acrosyringeal dysfunction as the cause.

The acrosyringium (the eccrine coil of the eccrine glands).......
Any of the numerous small sweat glands distributed over the body's surface that produce a clear aqueous secretion devoid of cytoplasmic constituents and important in regulating body temperature. The eccrine coil at the base of this intraepidermal gland is called the acrosyringium . (accro-syringe-ee-um) The eccrine glands are more numerous and are more generally situated over the body, unlike apocrine glands which are associated with hair.
 (http://www.nature.com/milestones/skinbio/images/subject_index_02.gif)
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ABSTRACT
Three selected cases of transient acantholytic dermatosis were studied because of their definitive correlation with sweating due to fever and/or bed-ridden situations. Biopsy specimens were serially sectioned and acantholysis was found in the acrosyringium or traced to connect to the acrosyringium in all biopsy specimens. Carcinoembryonic antigen (CEA) and eccrine gland-specific monoclonal antibody, IKH-4, were positive in acantholytic cells. Electron microscopy revealed electron dense material filling the lumen (the hollow part of a tube)  of intraepidermal eccrine ducts. This material leaked into lateral intercellular spaces of the luminal cells, passing tight junctions. Marked oedema and numerous lysosomes ( these were reminiscent of those found when eccrine acrosyringium is formed in the embryo; this suggested that an occluded and damaged eccrine intraepidermal duct was being rebuilt via lysosomal digestion.
lysosomes.....
These are organelles which are a part of all cell structure in animals/humans. They are the cells trash can!
Scroll to the bottom and read phagocytosis and autophagy
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=cooper.section.1519
 
For socalmom
See how a dust mite can cause itchiness and red welts which can be severe, especially if you suffer from atopy
http://www.cellsalive.com/mite1.htm

In understanding these processes it is then easy to understand how an abnormal immune response caused by a hypersensitivity ( in you) to some  exogenous  (not of the body) factor, can target a focal/non-focal area , resulting in Grovers (in you).
Bunnie
Title: Re: Grover's disease
Post by: socalmom on Saturday August 02, 2008, 03:34:39 AM
Bunnie,

Wow what a post!!!!  I honestly am going to print and reread it countless times to be able to absorb as much information as possible! What an incredible asset you are to this forum!
I am leaving on vacation tomorrow and staying on the beach for a week.  (Oh joy) My goal is to not exercise (no sweating), spend time in the ocean and hopefully have the salt water will give me some relief! I will be hanging out underneath the cabana this year avoiding the sun.  Hey, I am already a candidate for skin cancer...I am quite tan from running outside as much as I do. I will just hang on to the farmer's tan I ususally get rid of on our beach vacations.
Thanks again for all of your info!

Socalmom
Title: Re: Grover's disease
Post by: bunnie on Saturday August 02, 2008, 10:03:29 AM
Hi again, I forgot to explain the rest of Hashimoto's research conclusions (the 5th quote down) I don't want to bore you with this, but remember there are others reading not just on this board, but out on the web who may want to understand, and it proves my point that just one little factor in a biopsy, represents a huge explanation, which a derm has not the time to explain.  In that quote it say's.....
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Previously, CD44 was reported to have a normal pattern on the surface of acantholytic and periblister cells, an implication that desmosomal adhesion molecules may be more important than nondesmosomal adhesion molecules in Grover’s disease.
What those CD numbers mean:
CD Markers. Cluster of Differentiation (CD)
The cluster of differentiation (CD) is a protocol used for the identification and investigation of cell surface molecules present on leukocytes.(white blood cells). CD molecules can act in numerous ways, often acting as receptors or ligands (the molecule that activates a receptor) important to the cell. A signal cascade is usually initiated, altering the behavior of the cell. Some CD proteins do not play a role in cell signalling, but have other functions, such as cell adhesion. There are approximately 250 different proteins.

The CD system is commonly used as cell markers; this allows cells to be defined based on what molecules are present on their surface. These CDmarkers are often used to associate cells with certain immune functions or properties.

While using one CD molecule to define populations is uncommon (though a few examples exist), combining markers has allowed for cell types with very specific definitions within the immune system.
It is important to note that, while CD molecules are very useful in defining leukocytes, they are not merely markers on the cell surface. While only a fraction of known CD molecules have been thoroughly characterised, most of them have an important function.
In the example of CD4 & CD8, these molecules are critical in antigen recognition.  To sort out what each cell can actually do, CD molecules are utilized in cell-sorting, using various methods including flow cytometry.
Cell populations are therefore defined using a '+' or a '–' symbol to indicate whether a certain cell fraction expresses (shows or has)  or lacks a CD molecule.
For example, a "–" cell is one that expresses CD34, but not CD31. Bearing in mind that these are all leucocytes (of which there are groups and sub groups) and within each group there are other groups, but each with specific functions. These CD numbers represent a function
This particular CD combination,* CD34+, CD31-* typically corresponds to a stem cell, opposed to a fully-differentiated endotheliel cell. ....in other words each function of the cell is displayed in molecules on its surface, and each has been given a number. When seen in biopsy the technician can determine what the function/functions of the cell is (from the presence of the particular molecules on its surface, and its function number)
Types of cells, and their CD markers.
Stem Cells= CD34+, CD31-
All Leukocyte Groups =CD45+
Granulocytes = CD45+, CD15+
Monocytes  =CD45+,CD14+
T Lymphocytes= CD45+,CD3+
T Helper Cell =CD45+,CD3+,CD4+
Cytotoxic Tcell = CD45+,CD3+,CD8+
B Lymphocyte = CD45+,D19+ CD45+, CD19+ or CD45+,CD20+
Thrombocyte =CD45+,CD61+
Natural Killer cell =CD16+, CD56+, CD3-
Cell Adhesion =CD44+

Two commonly used CD molecules are CD4 and CD8, which are, in general, used as markers for helper (CD4) and cytotoxic T cells,(killer tcells) (CD8) respectively. When defining T cells, these molecules are defined in combination with CD3+. Other leukocytes also express these particular CD molecules. Some macrophages (cells which devour invaders =antigens that have been presented by dendritic cells ,and break them down)  express low levels of CD4. Dendritic cells (antigen presenting cells)  express high levels of CD8.

CD44 is a transmembrane glycoprotein.  CD44 is found in a wide variety of tissues including the central nervous system, lung, epidermis, liver, and pancreas, Variants of CD44 (cd44v) are expressed in tissues during development, including embryonic epithelia. ( as the research points out in the quote)
Known functions of CD44 are cellular adhesion (aggregation and migration), hyaluronate degradation, lymphocyte activation, lymph node homing, myelopoiesis and lymphopoiesis, angiogenesis, and release of cytokines. The functions of CD44 are principally dependant on cellular adhesion in one setting or another.
hyaluronate degradation -(hy-aloo-ro-nate)
Hyaluronan is also a major component of skin, (a salt or ester of hyaluronic acid), where it is involved in tissue repair. When skin is excessively exposed to UVB rays, it becomes inflamed (sunburn) and the cells in the dermis stop producing as much hyaluronan, and increase the rate of its degradation. Hyaluronan degradation products also accumulate in the skin after UV exposure. ( ?? Could it be  these accumulated Hyaluronan degradation products that are then engulfed by the lyosomes, hence the abundance of lyosomes seen in Grovers in biopsies??) While it is abundant in extracellular matrices, hyaluronan also contributes to tissue hydrodynamics, movement and proliferation of cells, and participates in a number of cell surface receptor interactions, notably those including its primary receptor, CD44.
myelopoiesis -(Mye-lo-poy-ee-sis)
The formation of bone marrow or of blood cells derived from bone marrow
lymphopoiesis,- (Lympho-Poy- ee-sis)
The formation of lymphocytes
angiogenesis
The process of developing new blood vessels.
Cytokine- see the definition of cytokine here....
http://www.answers.com/topic/cytokine
Cytokines are Chemical Messengers, a diverse and potent group of proteins and peptides that are signalling compounds, produced by immune cells to communicate with one another. They act via cell-surface cytokine receptors, and are the chief communication signals of T cells.Clever they are!
So you can see how very complex just one specific immune response is! (regarding Grovers in this case) and this is just a teeny fraction of it. However when you read what these cells do, and the presence of some of them seen in your biopsy, and what their function is, it all makes sense.
Bunnie
Title: Re: Grover's disease
Post by: Dondi on Saturday August 02, 2008, 07:23:26 PM
Bunnie      Like SoCal   I will haveto reread this over and over.  My brain is not that scientific.  Somewhat I think I get what your saying as that one thing can trigger another as a response to a immune  response,or stress?  I think I phrased that halfway  right.  I know that  the word focal was used on my  hubbys biopsy,  they said multiple levels were examined and do not reveal evidence of focal acantholytic dyskeratosis, however, Grocer's disease cannot be excluded.    Where mine says Grover's disease (transient acantholytic dermatosis) and goes on to say spongiosis, acantholysis, dyskeratosis and a suprerficial perivascular mixed inflammatory cell infilitrate.  I did see a dermatologist not a GP, I saw a allergist immunologist to check and make sure something else wasnt causing it or adding to it such as food allergies etc.  I was desperate.  And on bloodwork  I had a slight increase in eosinophils and autoesinophils ( hope I spelled that correctly).  Allergist said I didnt test positive for something in the IG's you mentioned and I imagine it had to do with food allergies as I was thinking that maybe there was something there.  I did test positive though for TPO ab when my thyroid was rechecked, not overwhelmingly, but its my understanding that positive for antibodies is just that positive.  I do understand that basically grovers seems to be a disease where the skin does not seperate properly, and I guess thats the real short version  LOL.  I see you have medical  background so therefore you are much more aware and as SoCal said an asset here.    And SoCal  have a great vacation, and my hubby said the same thing about salt water. He  wanted to go to the beach and soak and see if it helped.  Im real fair and break out in a rash from the sun after a short time now ( didnt use to)  I think a lot of it may be meds I take.  Let me know though if it helps you, I can always get a big umbrella,  or just get sea salt for the tub.  That sounds so sad.   I havent been to the gym in months due to this and when I go out and its humid I start itching, so I am living in my a/c this summer.    Anyway thanks for the input. 
Title: Re: Grover's disease
Post by: bunnie on Saturday August 02, 2008, 09:12:16 PM
Hi Dondi, that is the best way to understand it, read it over so that it becomes more understandable.
However, in this last post I was just explaining what CD44 is. Such a little thing with a great big explanation, and if you want people to understand, you can't abbreviate it. Another reason for the detailed explanation is to offer you an explanation of the medical evidence that is known concerning Grovers.
The  previous post is showing what a CD44 marker is, and its presence in biopsies shows that it is there because it is a cell involved in holding the proteins which make up the prickle cell layer  of the epidermis together. Ancantholysis is the seperating of these cells and the loss of the cohesion molecules in this condition. (and some others like my own.)
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that one thing can trigger another as a response to a immune  response,or stress?
No I'm afraid that isn't right Dondi. Severe stress can exascerbate an already existing condition.
When the skin is damaged, or when invaders manage to enter the body, cells are destroyed, and the dying cells trigger an immune response to the invasion, which is inflammation. The inflammation also causes blood vessels to dilate, increasing the blood flow.
Inflammation is the body's alarm bell. Once it goes off, it draws defensive cells to the damaged area in great numbers. Increased blood flow helps defensive cells reach the place where they're needed quickly, and it also accounts for the redness and swelling which ensues. This helps isolate the foreign substance from further contact with body tissues.
These barriers form the body's first line of defense. The next line of defense involves white blood cells that travel through the bloodstream and into tissues, searching for, and attacking micro-organisms and other invaders.

The cells which make up the immune system (body's defence system) each have a specific job to do. In order to do that job they each need a signal from another specific cell in order to be activated. I am explaining that at the simplest level, there is much more to it as each cell has a different function. That is what I was refering to in saying each cell acts upon another to make the defence response efficient. If the body is invaded by a virus or whatever, it is met first by the complement system. These cells act quickly and are deadly. They mark the invaders to pin point them for destruction, and quickly activate other cells to finish off the job.  If you carry a genetic predisposition to having a hypersensitivity to something, Be it an "out of the body" factor (exogenous)  or something of *self* like hormones, and other gland/cell secretions, (endogenous) then if you come into contact with this factor, in a specific combination of (multigenous factors/factors not of the body, and factors of the body), then because you carry the predisposition it can trigger  this hypersensitivity, and  then an adverse immune response will occur, and within that response, the resulting malfunctioning cells of the immune system will target certain proteins in certain areas of skin, or organs or blood etc. the result of which is the disease which you have.
That link I left to my blog explains it really simply. You may not understand it all but you will certainly get the "gist" of it, and most you will understand anyway.
With regard to your biopsy, I explained Acantholysis dyskeratosis previously in the first post. However, Spongiosis, means oedema  between (intercellular) the cells (Keratinocytes) of the epidermis. (caused by the loss of cohesion molecules,(Desmosomes) which produces acantholysis (seperating of the proteins in the epidermis) The resulting spaces inbetween the cells fill with an abnormal accumulation of fluid in the tissues , causing swelling.
Superficial Perivascular mixed inflammatory cell infilitrate, is when inflammatory cells are clustered around blood vessels. Usually if it says superficial, then the blood vessels of the dermis are not involved. Obviously in superficial and deep , all are affected. I presume by the use of the word "mixed" it is refering to mixed inflammatory cells, such as neutrophils and eosinophils basophils, and mast cells , all of which contribute to inflammation. (see my blog to learn what these are and their function.) I have not heard of autoeosinophils before to be honest. Do you think Dondi he may have said "autoantibody IgE" instead? Unless they have been produced within an autoimmune response, which would explain that, however I understand the jury is still out as to whether or not Grovers is in fact an autoimmune disease. After reading every post on here it seems that it possibly is! I can see symptoms typical of autoimmunity in every post.
Eosinophils, Basophils. and Mast cells are Granulocytes, granule-containing cells in tissue.
Eosinophils are so named because their cytoplasmic granules stain red with the dye eosin. (You know Like the stuff you can put on wounds) They are also known as eosinophilic leukocytes.
Eosinophil granulocytes, usually called eosinophils (or, less commonly, acidophils), are white blood cells of the immune system that are responsible for combating infection and parasites . They also control mechanisms associated with allergy and asthma. They are granulocytes that develop in the bone marrow before migrating into blood.
Within their cellular cytoplasm are a diverse collection of chemical mediators, such as histamine, and proteins such as eosinophil peroxidase, RNase, DNases, lipase, plasminogen, and Major Basic Protein.These mediators are released by a process called degranulation, following activation of the eosinophil, and are toxic to both parasite and host tissues.
They are found in the medulla and the junction between the cortex and medulla of the thymus and, in the lower gastrointestinal tract, ovary, uterus, and spleen, and lymph nodes, but not in the lung, skin or oesophagus, or some other internal organs under normal conditions. The presence of eosinophils in these latter organs is associated with disease. Eosinophils persist in the circulation for 8-12 hours, and can survive in tissue for an additional 8-12 days in the absence of stimulation.
See where I have altered your quote below...
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I do understand that basically grovers seems to be a disease where the skin cells do seperate
and of course they shouldn't. Sorry Dondi, :hugs:
Atopy
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Atopy is an inherited predisposition  which causes a tendency to suffer from one or more of the following “atopic diseases” such as: allergic asthma, allergic rhino-conjunctivitis and atopic dermatitis. The diagnosis of “atopy” is not based on one single distinctive clinical feature or laboratory test, but rather results from a combination of patient and family history and clinical findings.
Grovers stems from....
 a genetic predisposition in your DNA, predisposing you to atopy,
which if stimulated, results in an abnormal immune response,
the pathogenic result of which in you,
causes the cells, (desmosomes)
which hold together the cells of the epidermis, known as (keratinocytes)
to come apart,( Acantholysis)
filling with fluid, and causing oedema in the tissue.(Spongiosis)
there is abnormal, premature, or imperfect keratinization of the keratinocytes (dyskeratosis),
and it also affects some cases by targeting the acrosyringium of the eccrine coil in sweat glands, and causing acantholysis and acrosyringium dysfunction. (a dysfunctioning sweat gland )

I hope this helps your understanding Dondi.
Bunnie


Title: Re: Grover's disease
Post by: bunnie on Sunday August 03, 2008, 12:15:21 PM
For socal, Hi! I didn't explain what Clinical Correlation meant in your biopsy report.
When interpreting a biopsy, or an  imaging study (xray, CT, ultrasound, or MRI, among others), sometimes a particular finding can mean different things in different clinical situations. When a lab technician  or radiologist comes across a finding which may mean multiple things, they say "please correlate with clinical findings" or "clinical correlation requested" or "essential"  to indicate that the finding may mean several things,  in different circumstances.
This again proves the point , because acantholysis, dyskeratosis, and spongiosis, are often found together in many other conditions, especially Bullous (blistering )conditions like my own, and indeed it does say in the literature, that findings in Grovers are representative of other conditions, in particular pemphigus vulgaris a bullous  disease, that falls in the category of my own condition. These processes can also appear seperately in some other conditions.   
So that completes the explanation of your biopsy!
The reason biopsies and blood are taken with skin diseases is because a full blood spec is the physicians main diagnostic tool It is like a map of what is going on in your body. Anything that is naturally and should be there, showing the specific levels of essential nutrients, everything, or shouldn't be there, will show up in your blood spec.
Again a biopsy shows exactly what is going on in the skin. Usually two biopsies are taken, one from skin with lesions and one from skin that is normal (or has none.) Anything affecting the skin will be in that biopsy. Now through special blood testing alone they can confirm if a person has the condition affecting the much deeper layers of the skin in the dermis. I have had this done. As yet this technique is only available in Japan as far as I know, and normally blood samples are sent there, however my derm knew how to do it and he and the lab techs did the set up, and we got the result. My derm said many many hours were taken up, to just do the set up, and again to do the actual testing, nealy 3 weeks he told me before they could even start.
Bunnie
Title: Re: Grover's disease
Post by: Dondi on Sunday August 03, 2008, 06:04:14 PM
Hi Bunnie   Thank you for the explanation.  I do understand it better but I doubt I could repeat, to explain to someone else yet.  LOL!    :)  I looked at the bloodwork sheet to check, it says Auto EOS#  0.8  High ( ref range) 0.0-0.5 )  And there is Auto next to Neut#  LYMP MONO  BASO and then a another list of the same without AUTO before it  on the eosinophils it has 7.4 high  (ref range-0.0-0.7 )  The Dermatologist just said it showed a slight increase, and that seems to be what it is slight.  I do have to say, in your final few sentences, it made me think  and Im not sure if I a completely incorrect in this.  But Prior to my thyroid issue becoming out of hand I was a heavy sweater, I apparently was sub clinical for a while , but for whatever reason my thyroid levels suddenly tripled in a months time so I guess something had been going on internally, not that it doesnt in some many others, it is so common.  But I had noticed over the months before my skin drying  the fact that I was not really perspiring as much.  When I went to he gym I would sweat but not like before, and my skin would get goose bumpy.  I was getting strange blisters and they were on the base of my back that were fluid filled and it was itchy.  I couldnt see them and of course I scratched and that is when I realized they had fluid .  I just didnt think much of it even when it happened again. But then it happened on my hand and wrist and I actually had one on my inner lip and sides of my mouth.  But they disappeared so quick I wasnt able to show the dermatologist, and he said you should have come in.  Unfortunately it wasnt on days he was in his office, and they then they are gone and just a brownish red mark is left.  But to get back to the sweating question I had cause I am getting off track,  Would the sudden lack of sweating from the thyroid problem and the antibodies bring this out?   I also had a 3 stents put in my heart 2 drug eluting brought me to 5 stents.  I had a infection in the radial site they used for the angioplasty and had to have minor surgery to open the site and clean it out, on strong antibiotics, then had a major ear infection that took  over a month to clear up and again antibiotic drops and strong antibiotics pills.  Started to feel really bad and gained 25 pounds, just felt wicked, could barely move myself.  And then  a lot of stress around the holidays and then  there I am scratching and scratching.  To make it more confusing, I have heard of some people being allergic to some of the drug eluting stents due to polymer being used to coat them, and I have read of people a year later starting to itch, breaking out in hives.   If I am scratching itchy little hives just come out.  Im not sure if this a reaction to my scratching the initial itch or if it is hives coming out and thats why Im itching so intensely.    Sorry for the long winded post and I hope I made sense and didnt go off track to much.
Title: Re: Grover's disease
Post by: Dondi on Sunday August 03, 2008, 06:22:53 PM
Bunnie     Just started reading your blog.  WOW! 
Title: Re: Grover's disease
Post by: bunnie on Sunday August 03, 2008, 07:28:37 PM
Hi Dondi, I cannot say for certain what is going on in you because you have had such a lot going on, you poor thing!
All I can say is I think....  see in blue
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there is Auto  (this could be autoantibody, but whether it is associated with the Grovers, ie an autoimmune response resulted in Grovers, or whether because you have already an autoimmune condition ie: the diabetes, or it is the antibodies in the thyroid test, I honestly don't know) next to Neut#  (neutrophils)   LYMP (Lymphocytes) MONO (monocytes) BASO (basophils)and then a another list of the same without AUTO before it  on the eosinophils it has 7.4 high  (ref range-0.0-0.7 )
 If there is a list with auto in front as you say, then "auto" is Greek for *self.*    Do you think yourself that the appearance of your condition is like grovers? I honestly can't say about the sweating Dondi, I really don't know. However, people who suffer from autoimmunity generally suffer from Atopy too, which makes you hypersensitive to many different things. Any hypersensitivity to (anything really) could have triggered this off in you, especially as you already have diabetes, and thyroid problems. The result of a specific response to something non-specific has resulted in Grovers in you. That is what it means by idiopathic. It is a specific combination of genetic predisposition, non-self factors, and/or self factors, but specifically, exactly what the non-self and or self factor is, that the response was mounted against, is unknown.=idiopathic.
The reason why you itch.....
The itch is a symptom of your disease. Basically, there are two types of itch, sensory, and allergic.  A sensory itch differs from an allergic itch, because there is no external rash and no irritation at the itch site. It is still in research but it is known that an "itch" can only come from superficial layers of skin (the Epidermis) mucous membranes and conjunctiva.  The  bundles of nerves in these tissue types are the only ones which carry itch signals. They are pain receptors which are either uninsulated or lightly insulated, called nocioceptors. It is thought that scratching is one of the best ways to excite these uninsulated pain receptors, and the signal that  scratching sends to these pain neurons temporarily overwhelms or covers up the itch sensation. Of course one also stimulates the inflammation so it becomes like an ever increasing circle.
To be absolutely honest Dondi , if it were me, I would go to a derm who specialises with autoimmune bullous (blistering )diseases, and get a second opinion. You are perfectly right to do so, nearly everyone gets a second opinion with these conditions.
Quote
I just didnt think much of it even when it happened again. But then it happened on my hand and wrist and I actually had one on my inner lip and sides of my mouth.
That quote is my reason for suggesting that.
 Bunnie
Title: Re: Grover's disease
Post by: john m on Monday August 04, 2008, 09:37:39 AM
John m (Denise)
this is Denise John M has been admitted to hospital and now has Celulitas in his foot he at the moment is on a anti Bio drip in Wonthaggi Hospital has any one with grover's had this problem he has not been told that this is not good his Grover's seems to have reduced a bit with calamine lotion and the steriod creme and dermez lotion but he has only been putting this (the last 2 on feet) and then putting socks on he is still itching but it does not seem as bad and the rash looks a lot better may be the antibiotics are helping,I have been in touch with out GP the Mercury tests he had are still not back yet they take some time. His other test are back and they are the same he had 6mths ago liver was high (so he was taken off lipitor) kidneys fine blood pressure tabs he was taken off ulcer medication he has not taken for about 5wks and no problems so far. Drinks lots of water and V8 juice cranberry juice. has not had food for about 4 days only water juice no taste he had thrush in the mouth but the tablets that they gave to him to suck seemed to work so far,but he still can not eat anything I think he has gone down to about 60kg in a matter of weeks. I do not think he knows how sick he is at the moment and how long he is going to be in hospital. can anyone give me some advise .  Denise (john M )
Title: Re: Grover's disease
Post by: bunnie on Monday August 04, 2008, 12:13:06 PM
Hi Denise, I do not have Grovers , but I know something of it.
I do not think the cellulitis may have anything to do with the Grovers disease itself, but it can easily arise from traumatised skin that has been scratched, in turn due to any itchy symptoms from the Grovers, but of course I am not a doctor, and therefore  you could just ask the doctors that question. Cellulitis is a different thing altogether.
Cellulitis is a common infection of the lower layers of skin (dermis) and the subcutaneous tissues (areas underneath the skin) caused by a bacterial infection. It can occur in anybody that does not have disease. While cellulitis sometimes develops around wounds in the skin or surgical incisions, in other cases it arises without an obvious source for the bacterial infection. Staphylococci are the bacteria that most commonly cause cellulitis, followed by Streptococci. Less commonly, other types of bacteria may cause cellulitis.

Cellulitis usually begins as a small area of pain and redness on the skin. This area spreads to surrounding tissues, resulting in the typical signs of inflammation – redness, swelling, warmth, and pain. A person with cellulitis can also develop fever and/or swollen lymph nodes in the area of the infection.

Anyone may develop cellulitis. However, people whose immune systems are weakened from immune-suppressing drugs(including from chemotherapy for cancer, ) and those with diabetes, are at highest risk for developing cellulitis.
The skin normally has many types of bacteria living on it, but intact skin is an effective barrier that keeps these bacteria from entering and growing within the body. When there is a break in the skin, however, bacteria can enter the body and grow there, causing infection and inflammation. The skin tissues in the infected area become red, hot, irritated and painful.

Cellulitis is most common on the lower legs and the arms or hands, although other areas of the body may sometimes be involved. If it involves the face (erysipelas), medical attention is urgent. People with fungal infections of the feet, who have skin cracks in the webspaces between the toes, may have cellulitis that keeps coming back, because the cracks in the skin offer an opening for bacteria.
Cellulitis treatment may require hospitalization if it is severe enough to warrant intravenous antibiotics and close observation. At other times, treatment with oral antibiotics and close outpatient follow-up is enough. Treatment is focused on control of the infection and prevention of complications.Antibiotics are given to control infection, and analgesics may be needed to control pain.
The infected area, is usually elevated,  usually higher than the heart, to minimize swelling. Complete rest is required until symptoms improve.

Outlook (Prognosis)
Cure is possible with 7 to 10 days of treatment. Cellulitis may be more severe in people with chronic diseases and people who are susceptible to infection.
I trust this allays you fears somewhat, but it can be quite serious as mentioned above, requiring hospitalization.
I do hope John is soon on the mend and recovers well from this painful condition.
My best wishes for his complete recovery.
Bunnie
 




Title: Re: Grover's disease
Post by: john m on Wednesday August 06, 2008, 08:36:16 AM
John M (Denise.
Thank you Bunnie they have got a lot of puss out of the foot today and the swelling has gone down a lot from yesterday he is having intravernous anti-biotics and is not due home from hospital until sunday they have operated on his foot about 3 times and now have the drip is flowing because of the infection it was not getting into the foot (so they said). His Grovers seems to have settled down a bit but he is still scratching which does not help. Thank again.    Denise.
Title: Re: Grover's disease
Post by: bunnie on Wednesday August 06, 2008, 08:59:23 AM
Hi Denise, Is your husband diabetic? I ask because diabetics are prone to cellulitis and it is very worrying when or if they get it.
He is having a hard time of it, poor soul, he must have been in awful pain.
I pray he will soon feel better, at least the awful stuff is draining.
My best wishes to you both, I can understand how worried you must be.
Bunnie
Title: Re: Grover's disease
Post by: vrod1234 on Thursday August 07, 2008, 07:14:32 PM
Hi All,

I was diagnosed with Grovers disease about a month ago following a biopsy. Needless to say I was quite upset to find there was no known cure.

I was thrilled to find this forum and I have read and reread all 36 pages gathering all the information I could find. Not meaning to sound negative but it seems that all of the attempts at controlling this annoying disease from Efudex to Valtrex to Accutane to narrow band UVB light to chelation to vitamin D and all the others have failed to be the magic cure. At this point rather than attempt all of the treatments you have all been through already, I am just trying to keep myself comfortable. So far I have found that Walgreens Steroid-Free Anti Itch Lotion does a GREAT job to control the itch. I had been using Sarna Sensitive but it doesn't give me the relief that the Camphor and Menthol ingredients do.

It is amazing to me how non cooperative the Dermatologist's are. I have been to two of them so far and both have basically said " sorry, there is nothing I can do for you other than steroid creams which, by the way, you shouldn't use too long." The last Doctor I went to, I brought a list of the various remedies I saw on this forum with me hoping to begin experimentation. When the Doctor saw the list he immediately began telling me why Efudex and all of the other things I had written down will not work and refused to discuss it any further. So, I like you, will continue to look for that magic cure. I Called the The American Academy of Dermatology to ask if there were any studies going on at present with respect to Grovers and the answer was NO. It is hard to believe most Doctors say "you have what?" On the website WWW.medhelp.org/posts/show/244181,  DR. Alan Rockoff, Dermatology and skin disease  states " Grover's is a relatively unimportant condition, which doesn't respond too well to most therapies, but can often be controlled by topical creams and other anti-itch measures." Did you pick up on the "unimportant"?

Anyway, I will stop rambling on but I do have one question. One of the Doctors told me of a study he saw of a regimen of Vitamin A, 50,000 u, 3 times a day for 2 weeks. Then 50,000 u, once a day for 2 weeks. Has anyone heard of or tried this approach? I had heard that Vitamin A can be toxic to the liver and have not tried it as yet.

Vrod
Title: Re: Grover's disease
Post by: bunnie on Thursday August 07, 2008, 08:13:19 PM
Hello Vrod, I think the word "unimportant" was a very bad choice of a word,I agree, and also open to misinterperation. Its only unimportant if you don't have the damn condition! However in fairness, I believe what he is meaning, is that the condition is not life threatening or causing disability such as my condition did to me, and can be tolerated in comparison to other conditions.
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I am just trying to keep myself comfortable.
You have it in one!
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that all of the attempts at controlling this annoying disease from Efudex to Valtrex to Accutane to narrow band UVB light to chelation to vitamin D and all the others have failed to be the magic cure.
There are none, for the reasons I gave in my previous posts. All that can be done is to control it. There cannot be a magic bullet, because this predisposition lies in your DNA. The only magic bullet would be a drug that can alter the transcription of these predisposing genes. These are a part of your genetic make-up. Accutane does this to some extent, but the specific genes need to be identified.
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Vitamin A, 50,000 u, 3 times a day for 2 weeks. Then 50,000 u, once a day for 2 weeks.

Is he talking of Isotretinoin? if so it is well known in the literature.
Please see what Vit A does.... http://en.wikipedia.org/wiki/Vitamin_A#Gene_Transcription Note from the info..
Quote
Vitamin A, in the retinoic acid form, plays an important role in gene transcription.

(I hope I am not making this so simple, and thereby alter the meaning)... When genes are stimulated by an "invader" or even something of self like hormones,  the information within them (the DNA) is transcribed by other molecules called RNA's and this "information" is made into proteins, which in turn signal the cells of the immune system and an immune response is mounted. If these particular genes are mutated, carrying a predisposition to having an abnormal immune response, then the information transcribed from them is also faulty, and the proteins that are made from it are faulty, and the signals they give are faulty causing each cell within this immune response to malfunction and being misdirected to "self" .
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It is hard to believe most Doctors say "you have what?"
I don't think a consultant dermatologist would say that, but a GP most probably would. GP's are not skinspecialists however, they may take a course or two, but not years of study and research into a specific subject.
All these immunomodulating drugs have side effects, some less than others, but one is monitored very closely by giving blood samples, urine etc. However, it depends on the severity of the disease in you, whether you will be offerred the treatments with these drugs, at least in the UK that is the case. Disease severity varies from person to person.
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I like you, will continue to look for that magic cure.
The best you can do is to understand how the immune system actually works, its structure and functions, and only then will so many of your unanswered questions be answered. You can then understand where research is at regarding these abnormal responses, and what it would take to try and correct it. Don't forget that medical research, unlike alternative treatments, undergoes rigorous processes of meta analysis.
bunnie
Title: Re: Grover's disease
Post by: anndrew on Thursday August 07, 2008, 09:30:07 PM
Vrod-I have yet to find a doctor that says taking a mercury test or and environmental chemical test will hurt you.  Conventional medicine will tell you that mercury  and environmental chemicals are very bad for a person and can cause many health issues including skin issues. Take the test and at least rule them out-there is no downside to the test.  Try accu-chem lab
Title: Re: Grover's disease
Post by: jd1 on Friday August 08, 2008, 03:06:54 PM
Vrod - I share your frustration re the response of most of the docs.  There are good ones out there who will work with you.  It just takes some work to find them.

Drew hasn't posted the details of his work on this issue, but I doubt that he will mind me stating this short summary:  he has had dramatic improvement by taking steps to remove the toxic burden of Hg and environmental chemicals from his body.  You state that all of these different attempts have failed to be the magic cure.  It is true that no one treatment has cured everyone who has tried it.  For example, chelation made a world of difference to mepen, joem, and me, but it has not worked for everyone who has posted here.  There's another woman whose name I'm blanking on right now who had fantastic results first from traditional Chinese medicine approaches.  Later she changed her treatment to Accutane and has had wonderful success.  Yet for at least one other, Accutane was not the magic bullet. 

The point is that several of us regular posters have found treatments that have made the skin normal or very near normal, although it seems that the same treatment does not work for everyone.  Considering how poorly understood Grover's Disease is, is that a surprise?  Perhaps it is the manifestation of any one of a number of imbalances in the body.

My first derm put me on high dose Vit A.  Nightmare.  I think what finally convinced me to stop was that I was loosing my hair.  And yes, I believe that too much is toxic to the liver.  This was when I first realized that I really needed to take control of my own treatment.  Sometimes docs drop a nuclear bomb on the body.  It clears up the problem but destroys everything else too.  Vit A isn't quite that, but you get the point.

I encourage you to listen to your intuition, pick a path, and give it a try.  You have nothing to loose.
Title: Re: Grover's disease
Post by: socalmom on Sunday August 10, 2008, 12:01:01 AM
Hi all!

Back from vacation at the beach. (We live 10 minutes from the beach but stay for a week in a condo directly on the sand) Dondi: a couple of thoughts on the ocean water.  I wouldn't say that swimming in the ocean made a marked difference at all.  (Isn't dry skin something we want to stay away from and the salt definitely dries out your skin.) I wouldn't make a special trip to the ocean in hopes of improving your rash. (Sitting in a wet bathingsuit actually made things worse.  I was changing my swimsuit 3 times a day!) Sorry....

Bunnie: I am SLOWLY picking up some of your posts. I do know that I have always had sensitive skin and have broken out with a heat rash when I have had too much sun exposure.  I was under a lot of stress in December, January and February and then my son got scabies (which I was never diagnosed with, but swear i had it.  I've read everything there is about scabies and we all treated TWICE) and the combination made my condition into a full blown case of Grovers. So, now my husband has a rash on his chest. We are a rashy mess!  The derm said it was just a common rash. I watch my kids like a hawk to make sure they aren't itching.  (I will tell you the scabies thing does something to your psyche.  I am completely freaked out that it will come back) I am insisting he go in for a biopsy.  Since Grovers is not contagious, the chances of us both having a rash at the same time seems too coincidental.

I can live with the Grovers.  Yes, I wake up at night and use Sarna lotion on it. Vrod1234:  Sarna Sensitive does nothing for me, try the Original formula.  It's been a lifesaver.  I will look into the Walgreen's product too.  (Sarna has a very distinctive smell  :o)  For a completely healthy person that exercises 6 days a week, it's an uncomfortable inconvenience!  Again...I can live with it knowing how completely blessed I am that this is the only health issue I have to deal with.  The problem is in the not knowing...yes, they confirmed I have Grovers (per biopsy) .  Is it actually Grovers? Why does my husband have a rash now too? And please Lord....the scabies thing is a nightmare!  My son that got it is a college athlete at a very distinguished college. Anyone can get it!  Yuck....I'll take the Grovers thank you!

Ah...I feel better for venting!
Title: Re: Grover's disease
Post by: bunnie on Sunday August 10, 2008, 12:49:09 AM
Hi socalmom
Quote
,(I will tell you the scabies thing does something to your psyche.  I am completely freaked out that it will come back) I am insisting he go in for a biopsy.  Since Grovers is not contagious, the chances of us both having a rash at the same time seems too coincidental.
  I know I have had it!
Quote
Anyone can get it!  Yuck....
I won't show you any pictures of the mite then?! :laugh:
 I don't know why you all have rashes except for your son of course, but I can throw a scenario out there that is more than a possibility.
First of all, rooms on college campus are notorious for the spread of scabies. It is spread through skin to skin contact usually, but they can live for a short time in and around the household and on clothes bedding etc. Hotel rooms are another source for getting scabies, even a 5 star hotel! It is very contagious, and if you had scabies, then either the scabies or the treatment itself could have stimulated these genes in you which predispose you to Atopic conditions. This hypersensitivity in you triggering these genes, mounting an abnormal immune response, the pathogenic result of which in you is Grovers.

If you had scabies, it is more than reasonable to presume that hubby had them too. He too may suffer from atopy, (not from your blood line of course) and exactly the same thing has occured in him, but, the pathogenic result in him is not Grovers, but another rash that has varying, but similar characteristics of Grovers,  (which many hypersensitivity type rashes actually have)
OR he may just have a secondary infection from scratching which can also have varying, but similar  characteristics of Grovers.

Quote
I am SLOWLY picking up some of your posts
You will have some reading then! Pick your way through it, understanding what you can. It is a gi-normous subject and very complex. Still if it overall makes sense to you , that is my intention. Remember though that both atopic (and autoimmune) conditions wax and wane in severity, the actual severity and longevity of the condition depends upon the genetics and the factors which triggered these genes, of the individual, and that these types of conditions can remit or start spontaneously and having no known specific cause. (idiopathically)
Regards,Bunnie
Title: Re: Grover's disease
Post by: Dondi on Sunday August 10, 2008, 04:56:38 AM
To  Denise  Inre to John  M.  I hope John is recovering and feeling better Im so sorry he became so ill, certainly doesnt sound like a funtime.  I wish him well ! 

SoCal  mom sorry to hear saltwater isnt the cure my hubby thought it would be.  Oh well!  But do hope you had a good time anyway.  We are all itching here still too.  Im going through a really dry skin period with tiny bumps all over my upper arms and lower legs, really awful,  but also noticed that now my freaken feet are burning a bit when Im in the shower ( very luke warm cool water)  My son found me a scrub with a high amount of oil in it and it seems to stave off itching for quite a while after bathing, Sabon makes it but not cheap, and in a glass jar to boot, I hate that.  SHowers are a bad place for glass.  Oh and by way, you mentioned being under stress prior to grovers,  I also was growing through a lot of stress prior to and did wonder if the stress brought on the higher TSH levels in my thyroid problem and set me off.  Or if it was the stress just triggered off the skin thing. 

VRod   I read the comment the comment Dr. Rockoff made.  I would really like to see him  have grovers for a day or so, didnt he also say something to the effect of being a minor annoyance besides unimportant , he basically blew it off.  And yes so far when I have mentioned it to other doctors I see they sort of look at me like oh ok!  And then you ask have you ever heard of it and get nope. 

JD1  About these enviormental tests,  how expensive are they and does insurance cover it at all?  Do you know if ACCu chem labs are here in New York City? 

Bunnie  I read a bit of what you had  mostly toward the last part of what you had and started to get the gist of what you speak of,  it doesnt make it tolerable though.  I havent had the blisters for a long while now, but if I start getting them again I will see a doctor about it.  I have other things going now as Im due for a little minor surgery at the end of the month for carpal tunnel, and since minor or major  surgery I usually have problems I figure I need to concentrate for the time being on getting through that nonsense and then after will again be trying to find a doctor that knows more about this stupid grovers.
Title: Re: Grover's disease
Post by: socalmom on Sunday August 10, 2008, 05:43:36 AM
Dondi,

Hang in there!  Sounds like you have a lot on your plate. You sound like you have such a great outlook on life...keep up the good work!

It's amazing how the rash moves around your body.  I thought it would be limited to the torso and back.  My underarms where my bra/workout top are, have been unbearable at times. I have also been itching on the back of my knees  (similar to eczema)  I just keep smearing Sarna on since you're not supposed to use a steroid cream near your underarms.  I also keep reading about rebound effects from steroid creams and want to keep their use to a minimum. (Of course my Derm never mentioned this to me.  I really haven't received much information other than I've had too much sun exposure and it seems I had this coming!)

So, it's Saturday night...I'm on the internet and my husband is calling upstairs to me and asking what the heck I am doing....I am conversing with some people around the world that are experiencing some freaky things with their bodies like me!  Bedtime.

Night all!
Title: Re: Grover's disease
Post by: bunnie on Sunday August 10, 2008, 11:45:02 AM
Hi Dondi,
Quote
it doesnt make it tolerable though.
Indeed it does not Dondi. Whatever eases the itch and discomfort for you Dondi, then that is the correct thing to do, everybody responds differently to different topicals, as indeed they do to medicine.  Socalmom and yourself mentioned the biopsies and I explained the pathogenisis of this disease, and each item on the report, in posts 691-3 and 5.
I have endeavoured to explain everything as simply as possible as to why this has occurred. It is Globally what medical science believes to be the case, and these conclusions are reached by the rigorous processes of meta analysis.
Meta Analysis is done, when individual trials are themselves of sufficient quality and validity. What meta-analysis does is to give enough size to have the power to see the result clearly, without the noise of the random play of chance.
Any meta-analysis must have enough events to make sense. Combining small, poor, trials, with few events will only mislead.
These are not theories, but are known proven facts as to date. I have also given brief information concerning the recent studies of mercury, and other metals , from the horses mouth as it were, questions asked directly to two specialists (one a specialist in the dental work involved in the pioneering surgery of my OOKP.)for this forum.
As yet not one person has been able to describe pathologically, in the same way as I have as to how Danzigs hypotheses, is supposed to cause this. So if that is the case those that believe in his theories are following a line of treatment on faith alone, otherwise it could be explained on here. I personally would really like to understand it, I have read some info on his theories, (there does not seem to be much data) but there are huge holes in it as I discussed with anndrew. If he is right then the entire global medical field is wrong, which alone tells me his theories are wrong, because in some conditions where these same inflammatory processes occur at a greater level, such as my own,  the situation is life threatening, and everything was tried to halt it, every hypotheses considered, and even tried, regarding some hypotheses, just in case there was the remotest chance of arresting these processes in me. Specialists abroad were even asked to contribute their opinions regarding my case, one of whom was a consultant ophthalmologist in New York, a Mr.Donnenfeld I believe his name was, and his Hypothesis was carried out, making me the first to ever have the procedure done . (I give this information just as an example as to the extent of the efforts taken.) There is no proven data tested on humans , and those which were tested on mice, proved to be dose related,(which stands to reason if the poor mice have their tissues flooded with it, and the lupus type rash which appeared, ONLY appeared in the mice which had been artificially made immunilogically predisposed.It did not occur in mice who were not made immunilogically predisposed.
The remittance of the disease is just as likely to be the pathogenic course of the condition, or the abnormal immune response itself. That is what these conditions do, flare and subside and can suddenly begin to remit for no apparant specific cause. (idiopathically)
Bunnie
Title: Re: Grover's disease
Post by: jd1 on Sunday August 10, 2008, 07:00:13 PM
Dondi, no idea re the costs of the tests.  I haven't done them.  Drew is the one pursuing that as treatment.
Title: Re: Grover's disease
Post by: Dondi on Sunday August 10, 2008, 08:11:21 PM
JD1  Sorry your right it is Andrew,  I looked to quick.  I guess I will try to just put it in a search on the internet.

SoCal  I am glad you mentioned the underarms, cause anything I have ever read always says mainly the trunk, but I have itched all over except the bottoms of my feet.  My underarms at one point were so bad I could not put deoderant on at all and when I tried it not only itched awful it wasnt absorbing into my skin.  When this all started it was my lower legs and then it slowly moved upward and included my head I had a few marks that my hairdresser saw.  I had one big red bump on my nose for almost two months ,that I thought was a pimple at first but it just stayed a red bump no pus.  Thank goodness it was just one, cause at the time I probably wouldnt have taken it to well, I was so down and felt drained from how bad I felt. 

Bunnie you definitely have been through the mill your self there, I cant imagine having gone blind.  I guess  you just have to roll with the punches but I know I would have been really devastated by that.  And yes I guess what works is what you go with and hope for the best, and it doesnt seem to be the same for all of us.  I did antibiotics also but the dermie told me out and out he didnt think it worked and would only give me a 2 week supply of Doryx.  Which actually aided in clearing some of the areas I had scratched up so bad. 

Until next time hope everyone is doing well.   

Title: Re: Grover's disease
Post by: vrod1234 on Monday August 11, 2008, 01:19:02 AM
If I remember correctly in reading over all the posts, I noticed there were more than a few which mentioned their Grovers outbreak occurring after a hospital  stay.

A short time after  leaving the day surgery unit for removal of one of my parathyroid glands, I developed  an outbreak on my chest which a biopsy later confirmed to be Grovers disease.  In addition to the red bumps on my chest I noticed a few pus filled bumps which turned out to be a case of non MRSA staff infection. I wonder what the circumstances were with the others who contacted Grovers after a hospitol stay and could we have anything in common.

Vrod
Title: Re: Grover's disease
Post by: Dondi on Monday August 11, 2008, 02:38:25 AM
Hi VROD,  well lets compare notes.   Jan of 2007 I went in overnight to the hospital to have a angioplasty and three stents were inserted through my radial artery  (wrist)  to drug eluting one bare.  Felt really cruddy as usual after this procedure and had high fever 102  normal for me.  At one point my wrist began to bleed but not spurt which should have bee a clue there was a problem and two nurses  clamped me off took forever and we were in the bathroom doing this ( really clean place)  anyway kept complaining of bad pain  over and over in wrist nobody listened and I ended up with a infection in my artery.  A week later I  was at a vascular surgeons office and since my artery closed off was able to have the infection opened up there in cleaned out, antibiotics for ten days.  Now I am reading of people with the drug stents suffering from polymer allergies a year later  with the same symptoms.  I actually was sick several times over the year and I was slowly but surely begining to itch but not in a major way till Jan of 2008, then it was full blown rash and overwhelming itching. A allergist/ immunologist I saw basically said the biopsy is what it is.  But he knew little about this grovers thing  and said he only has seen a few men with it and I was the first woman he saw with it and the fact that I had diabetes and thyroid problems probably was causing some of it.  What I believe is he didnt have a clue.  But obviously women get this too.  I tested positve for thyroid antibodies and said that not all but a lot of thyroid  patients with positive antibodies break out in rahses and hives and I do breakout in hives, but how true this is I dont know, and my endocrinologist who monitors my diabetes and thyroid is no help in this matter.   Well I gave you the long story but the short is yes I too developed a infection in the hospital  but it was a full year before I had a full blown case. 
Title: Re: Grover's disease
Post by: bunnie on Monday August 11, 2008, 11:41:10 AM
Hi everybody,
As I pointed out in my posts, infections due to Staph or viruses, drugs, allergies, hypersensitivities, hormone dysregulation, thyroid irregularities, parathyroid dysregulation caused through adenomas, and therefore producing too much calcium, all could have triggered this off. This is what is meant by enviromental factors, (exogenous) and *self* factors (endogenous).

The endocrinologist was perfectly right in what he was telling you Dondi, you already have an autoimmune disease (diabetes) and as the majority of people with autoimmune disease usually suffer from atopy, and add to that thyroid problems, I would say you were a prime candidate!

However, the pathogenic result of an abnormal immune response which has occured due to any one of the above , but most likely a combination of some of these factors, and a combination of multigenous factors, which predispose you to this occurring, is in you Grovers.

This same combination occurring in another predisposed person could be an entirely different condition, and not everyone here with Grovers will have had an abnormal immune response to the same factor, or multifactors (depending on the case) as you did, but you all carry genes which predispose you to this occurring, it is the predisposition not the resulting disease.
It just so happened that once these genes were stimulated by a hypersensitivity in you, to factors specific to you,  the pathogenisis of that specific immune response to the hypersensitivity, resulted in Grovers, it could just as easily have been another condition, because there is no hereditary marker to Grovers itself, unlike diabetes for instance. The genes just carry the predisposition.
Bunnie
Title: Re: Grover's disease
Post by: john m on Wednesday August 13, 2008, 04:47:54 AM
Hi. Every one Thanks for your thoughts and wishes. John M is still in hospital his Grover's has settled down a bit since he has been in Wonthaggi Hospital his Mercury/Chemical tests came back normal so that is on thing off our mind. They did a bone scan yesterday to see if the cellulitus had gone into the bone that also came back OK but they will not let him home until all the infection has come out of his foot, they have now put him back to oral antbiotics but have left the shunt in his foot and arm just in case, when he comes home he will have to have the district nurse every day for 4 weeks, he is not a happy boy. I got him a shaver that puts a skin softner on the skin when he shaves because he found the blade shave and the other razor that he had irritated his grovers so far this has worked. I recon he is in the best place at the moment we are going through a very cold week rain,wind, and very cold. at least the hospital is warm but he does not see it like that.  Will keep you up to date.  Regards Denise.(John M)
Title: Re: Grover's disease
Post by: john m on Sunday August 17, 2008, 02:55:17 PM
John M. (Denise)  he is not getting any better they have him drugged to eye balls now they are going to transfer him to a Melbourne Hospital for more test his temp keeps going up to 40' and them comes down they can not find what is causing the temp to go up he has not been told yet that he is going in to Melbourne he does not know where he is and every body is fibbing to him. The hospital has asked me to bring in food for him that he likes, but today they said he is going to be transferred the head Dr has been in to see him today. He has had a head scan that came be ok blood tests have been up and down, his cellulitas has settled and that is lookin good his grovers looks better or the rashs does he is not scratching so much they are putting calamine lotion on that and it looks better. Any Ideas could it be the drugs they have him on.?   any help would be or suggestions Please.  Denise.
Title: Re: Grover's disease
Post by: bunnie on Sunday August 17, 2008, 04:18:27 PM
Hello John M , I Personally think it would be wrong for anyone to offer you advice or any ideas, especially when your husband is so poorly, as we are not qualified to do so, but I wish to offer my sympathy and support to you in your obvious worry and distress, and hopefully things will improve for John once he is moved.
I have pm'd you as I don't wish to post on here.
bunnie
Title: Re: Grover's disease
Post by: john m on Friday August 22, 2008, 04:51:00 PM
John M had a fall in hospital and hit his head he had a massive bleed and to the brain he was pronounced brain dead by 3 doctors his life support was turned off after 3 days. thank you for your concern. Denise.
Title: Re: Grover's disease
Post by: Dondi on Friday August 22, 2008, 11:56:20 PM
Denise----I am so sorry for your loss!  My prayers are with you and I will say a prayer for John.  Please take care of yourself.
Title: Re: Grover's disease
Post by: jd1 on Monday August 25, 2008, 02:17:53 AM
Denise, I am very sorry.  I share Dondi's sentiments.  Best wishes to you.
Title: Re: Grover's disease
Post by: kt on Tuesday August 26, 2008, 02:49:33 PM
Hi . I am new to this site. I am a 42 yr old female, just diagnosed w Grovers. My derm is puzzled...after doing my own research, i stumbled here. i am curious...mine is more of a vanity thing...it's drivng me nuts, however, it doesn't itch!!! Anyone else here have grovers yet it does't itch?? I have it all on my stomach, small area middle of my back, and mild on the back on my upper legs...going to the phermacy today to pick up Dovonex....hopefully that will help?
Title: Re: Grover's disease
Post by: socalmom on Wednesday August 27, 2008, 03:43:21 AM
Hi kt,

I'm also female and 44.  I was diagnosed in March 08. (six months and counting!)  At first, I had a wretched rash that itched only slightly.  As of the past 5 days, the itch has become almost unbearable! It started on my stomach and lower back.  My back cleared (hooray.. sundresses!) but it started in my underarm area and moved to my chest.  My "chest" itches so badly that I want to jump out of my skin!  I run 8-10 miles every other day and I know this is exacerbating my problem.  I am sick to think that I may have to stop running to control the Grovers.
I've been using Dovonex for the past two weeks to no avail.  I had to stop using Clobex because I was concerned about using a steroid for an extended period of time.
I found a great Derm Physicians Assistant that is thrilled to deal with "something out of the norm." I have a follow up appointment on Friday and I feel like she'll be a great support person.  After my initial visit, she sent me away with a HUGE goodie bag full of samples to try.  I broke my body into quadrents and have been trying 4 different products on them to see if I have an improvement.  Nothing yet.  Even Benedryl isn't working...just knocking me out but I'm still itching at night. 

I know there are so many people with cases that are worse than mine so i don't want to complain.  Please be thankful that you're not itching. Let the vanity thing go...cool weather is coming and we'll be able to hide underneath long sleeve shirts and sweaters.

I'm hoping this will go away after a year....Hang in there!
Title: Re: Grover's disease
Post by: kt on Wednesday August 27, 2008, 04:59:10 AM
ugh!!! So are you telling me the itching just started after having it for 6 months? My gosh...the news just keeps getting worse!! I actually am taking a break from the gym b/c I want to see if it may help. I bet your derm was just as surprised as mine with the diagnosis, heh? Are you by chance fair skinned w sun damage? I'm Irish and have had several skin cancers. If only we knew back then what we know now!!  I Used to bake in the sun as a kid...errrrr!!!
Title: Re: Grover's disease
Post by: socalmom on Wednesday August 27, 2008, 07:04:04 PM
kt,

Blond haired, green eyed and from southern California.  Lots of sun...I'm going to take the next 5 days off from running/sweating and try to calm this thing down.
My Derms PA said we can try something more dramatic if the lotions I tried didn't work.  I have a feeling Accutane may be next.  I hate taking drugs but may have to give this one a go to try to clear it up.
Title: Re: Grover's disease
Post by: kt on Wednesday August 27, 2008, 08:15:50 PM
ha...blonde hair, green eyed..So cal (San Diiego) for 20 yrs. myself!! Before that..Las Vegas, born and raised until I was 19. Used to bake w baby oil all summer until I blistered.. just moved to Texas 3 yrs ago and it seems this State doesn't agree w me. I've had allergies and other health issues since i've been here. Interestingly enough, this rash developed 2 days after returning from LA. I had been sick with swollen glands and sore throat all week while in Cal and was in bed for 2 days. Then as soon as I started feeling better, voila! The rash from hell!!!!

Yep..I know about the accutane option..not wanting to go that route either.
Let me know if laying off the running helps..I am still hoping no sweating and Dovonex works...wishful thinking perhaps.
Title: Re: Grover's disease
Post by: Dondi on Thursday August 28, 2008, 05:24:17 AM
Hi  SoCal  and KT---How are you doing SoCal?  Sorry your itching bad, have you tried some cold aloe gel.  I found that helps a bit and diluted apple cider vinegar with a cold wash cloth,alternatives to using steroid creams, but temp.  Cant hurt to try it.  Well in my past rambling blogs, I know I mentioned also having been sick prior to breaking out full blown with the stupid grovers.  And yeah I know I have positive antibodies with my thyroid.  So I guess Im a little auto immune.  KT I also had a sore throat and  viral thing and lost my voice for a few days  in the begining of Jan.  and then about a week after I got better I had a cold or something and then I had this cruddy grovers come out and itching like crazy.  I cant stand the red marks anymore, I went to a wedding and in the pictures you just see the marks all over  my arms. I have them in lots of places too, its probably going to take forever for these to fade if they do at all completely.  So I understand the vanity aspect.  I had only one on my face thankfully and it took over a month to go away.  It does seem like so many people on here talk about having exposed to themselves to the sun to much.  I a fair also and have had my share of nasty sunburns with blisters and scabs.  But the question is what finally made it come out?  Being sick?  Maybe the immune system being taxed,  I had other things health wise going on for a year prior to that Jan.  I had a major ear infection that lasted for quite a few weeks and prior to that an angioplasty for my heart with stents and an infection following that in an artery.  Now that I think of it in April I had a another virus that lasted about a week, and prior to all this With the exception of heart problems and diabetes I hadnt had a virus or cold for a couple of years.  I have to say though I have moments when I feel like maybe its getting better, but then I start to itch again.  Anyone else recall being sick prior to getting this grovers?  I should also mention it was cool out since it was winter, and the derm kept telling me I had winter itch but of course it wasnt and he did a biopsy to diagnose me.  I would like to go back to the gym  too.
Title: Re: Grover's disease
Post by: socalmom on Friday August 29, 2008, 03:25:05 AM
Hi Dondi,

I saw my Derms P.A. today and she wants me to begin Doxepin, Doxepin cream and Solodyn. The Solodyn is a mild antibiotic and the Doxepin is an antidepressant that will relieve itching. I'm not really one to take an antidepressant and I was a little concerned when I read that a side effect is weight gain.  She asked me to stop running/sweating for a month.  I think the possibility of weight gain with the elimination of exercise may bother me more than the itching! Has anyone had any experience with the Doxepin?

So sorry to hear about the red marks on your arms.  My rash is confined to my stomach and "chest." The lastest addition to my "chest" yes...boobs  :o ..is maddening. Itchy, itchy, itchy! I can at least hide my rash under my clothes.

I have had two cases of viral meningitis.  8/1999 and 1/2007 (Not sure if this had anything to do with the onset of Grovers.)  I honestly believe that stress pushed me over the edge and into Grovers.

Kt, let me know how the Dovonex works for you.  I'll keep my fingers crossed that you will remain itch free!



Title: Re: Grover's disease
Post by: kt on Friday August 29, 2008, 04:02:00 AM
I will keep you posted on the dovonex. Socal mom, I am shocked it has moved to your chest. I am assuming no sun damage? Unless you sun bathed topless? hm...I've had this for two months and seems to be confined to my mid back (small area on my spine) and just a little on the back of my thighs...and it completely covers my stomach. If it starts spreading to other areas, I'm going to jump off a bridge!! (kidding of course) I'm curious about trying aldera..the cancer cream. I'm using it now for some superficial basal cells already. Maybe I will test a small area. Just a thought.
Dondi, talking about other health issues..I didn't mention, I also have Crohn's. It is an auto immune disorder..I've been fairly lucky that is has been managable all these yrs i've had it (18 yrs now) but lately it has been flaring...I feel like this may have a connection..who knows..

Will keep you both posted..
Title: Re: Grover's disease
Post by: Dondi on Friday August 29, 2008, 04:07:56 AM
Hi SoCalMom--  I hear on the drugs, but if you try for a month do you think it would cause that much or any weight gain in just a months time?  Its not a steroid?  right!?  Maybe its worth a shot.  I have heard of Doxepin I believe on this site but I dont know anything about either drug you mentioned.  At least you have someone who is trying more things.  My son went to the dermie we all go to today cause he has acne and he asked how my husband and I are doing, my hubby has eczema supposedly and he was surprised to hear he was still itching and my son said and my mom she is another story and he said he seemed sympathetic and he thought he felt bad he couldnt do more for me.  I was thinking yeah right.  He didnt want to give me more then 2 weeks of an antibiotic, cause he didnt think that helped, and Im thinking based on what??  Anything you know isnt much.  But it did help clear my arms up of the open sores I had from the papules and blisters.  I have had them almost every where already, I still itch on my chest  but thankfully not as much now,and it was very uncomfortable in certain areas of my chest.  Not to be to graphic but my butt is trying to clear up now.  I guess whats upsetting to me is it looks like your covered in pimples and its not pimples at all.  I always tried to take good care of my skin.  Yeah I sat out in the sun but for years I used sunscreens etc.  When I was a kid I wasnt careful and as I got older it didnt take much to burn so I tried to be careful. 
SoCal  viral mengititis, were you sick long from it?  It seems like most people you speak to here were ill or in the hospital for something prior to getting it but not all.  Do you recall through out the year if you had any itching or blisters you maybe didnt pay attentin to?  I know I did just didnt think much of it.  It wasnt annoying enough or something I really saw.  My back and legs  itched off and on.  I know Bunnie mentioned my diabetes  being auto immune but it isnt cause Ihave type 2 not type 1, but my thyroid problem apparently is because I tested positive for thyroid antibodies.  But diabetes and thyroid disease can cause extremely dry skin.  I saw my GP recently and we talked about it and he said he has seen some real bad skin dryness due to thyroid problems.  I started using a bath salt drnched in oils , and shea butter soaps and shea butter with argan oils, expensive but it is easing the itching up so I havent even had to use home remedies I had been using and its helping some of the scarred up blotches fade a bit.  Makes me feel better too.  I also just dontkeep the shower going I keep turning it off between washing areas.  I keep the temp on the cool side.  I havent been back to the gym in months and I feel wicked from that I need to exercise to keep limber.  Did you ache in the begining of this and feel prickly and like a wierd chill (I dont know if thats the right word) thing going on off and on with this.  I felt really bad when it first started.  Sorry for the long posts, I am not really good making a long story short.  I hope the drugs help you,the antibiotic one is it a cream or pill?  I would definetly give that one a try. Take Care!
Title: Re: Grover's disease
Post by: Dondi on Friday August 29, 2008, 04:35:39 AM
KT--  Hi-  This grovers skips around.  They say it is usally on the trunk of the body back and stomach usually.  It will seem like you have under control and then its someplace else,at least this has been my experience.  My dermie did tell me some people do get the bumps but dont itch and I found it hard to believe.  But from what I have read you dont have the itching, your lucky for that.  Dovonex is this a steroid cream too.  I have used several, I cant even remember the first one anymore started with dexamethasone or that is the name, then ultavate, and olux (clobex) and a 2 week try of doryx antibiotics.  I also took antihistamines made the itching worse.
So you have crohn's and your flaring now?  I asked SoCal if she thought maybe she had itching leading up to the fullblown outbreak and maybe didnt pay attention as I know I did, what about you?  Do you feel run down prior to have a flare of the crohns?  Take Care!  --Dondi
Title: Re: Grover's disease
Post by: jd1 on Friday August 29, 2008, 09:04:13 PM
Dondi, my recollection is that Dovonex is a Vit D3 cream, not a steroid.  There was an article in one of the derm magazines a couple of years ago where the Grover's sufferer used it for a few weeks....and it cleared her.  I can find the cite for you if you want to read it.  I and another on this board used it extensively for about a year.  It didn't do much. 
Title: Re: Grover's disease
Post by: CalamityJane on Saturday August 30, 2008, 02:12:27 AM
I used Dovonex in combination w/tar, and steroid for my PPP. It is not a steroid. Neither cleared my PPP.

Jane
Title: Re: Grover's disease
Post by: socalmom on Sunday August 31, 2008, 03:16:36 AM
Hi guys,

Better since I haven't worked and and/or sweat-ed in 5 days.  Ugh...this could be a problem.  I used to Doxepin lotion and it wipes you out.  I mean I passed out asleep.

I'm taking the next two days off from running.  I'll let you know if I improve.

Calamity...is that your labbie?  :D
Title: Re: Grover's disease
Post by: CalamityJane on Sunday August 31, 2008, 05:17:34 PM
 :) Yes, that's my beloved labbie, Rolo!

Jane
Title: Re: Grover's disease
Post by: Dondi on Monday September 01, 2008, 06:45:05 PM
Hi SoCal , JD1, Calamityjane--  I have seen dovonex listed as calcipatriol I think I have spelled that right.  I just had carpal tunnel surgery and I have to say the itching under this bandgae is driving me up the wall, they bandage you half way up your arm and around my wrist and up the inside of the arm is so itchy right now.  probably cause its also a little sweaty.  They change the bandage in two more days cant wait. 
SoCal I guess I missed that the one med you mentioned was in cream form and I was surprised that it came like that and its making you tired.  But then like I said hadnt a clue it came in a cream.  Hope it at least helps you.  Pine tar  I got for my hubby, his eczema  looks like big mosquito bites all over his middle trunk front to back.  It started getting like that in the last couple of weeks so I got him pine tar soap and he says it helps him for hours, but he needs to go back to dermie.  Calamity is that a pic of your dog?  If so what a sweetie! 
With the exception of my arm itching like crazy, my overall itching has improved a little, I almost want to bite my lip.  I dont know if God heard me asking for relief cause I knew I was going tobe one handed for a while or what or maybe cause I havent been able to shower for  4days.  Although I am venturing in today and will do a heavy moisturizing after or rather my hubby will be doing the greasing up.  Im hoping its a positive sign but I ve been here before thinking its going away only to have it get worse again.  Otherwise Im calling a doctor someone has suggested to me.  I wish we could all figure out the trigger for sure.  Cause it may have to all to do with preventing it in the future.  It may not be a simple answer and is a bunch of things in the pot that finally pulls that itchy trigger.  Take Care!
Title: Re: Grover's disease
Post by: CalamityJane on Tuesday September 02, 2008, 02:00:00 AM
Hi, yes Dovenex is calcipatriol (not sure of spelling). Wonder what the difference is between Dovenex and Talconex (sp).

Thanks for the compliments on my avatar. That's my happy chappy, Rolo, a yellow labbie, my constant, beloved companion.

I'll withdraw now from this thread as I don't have Grover's.

Jane
Title: Re: Grover's disease
Post by: socalmom on Tuesday September 02, 2008, 06:01:30 AM
Dondi,

I have improved immensely over the past 3 days.  I've charted a couple of different things.  I have not run since last Wednesday, I'm applying Dovonex regularly and I started a mild antibiotic.  (I don't think the antibiotic would have had a chance to make any difference)  I think it's coming down to the sweating.  I still have nasty bumps on my stomach and chest but the itchiness has almost subsided.  (I actually slept through the night last night!)  I only used the Doxepin cream for 2 nights.  (It relieves itching and also is an antidepressant.  Seems crazy that it comes in the form of a cream huh?)  I really don't need the antidepressant so I've only used it when completely necessary...and it does work and knocks you out!

I'm scheduled for a run on Wednesday with my running partner and I'll see if things get itchy again.  I'll let you know if I think the Dovonex has had a stronger impact or the lack of sweating.  I'd put my money on the latter.

Hang in there.  I'm sure your arm is extra itchy because it's in a bandage.  You and your husband certainly are a pair aren't you?
Title: Re: Grover's disease
Post by: Dondi on Friday September 05, 2008, 04:37:57 PM
Hi SoCal  Glad to hear you were able to at least sleep through the night, lets face it  you tend to feel overall being able to at least sleep.  Ive been able to for quite a while now, but when it was at its height forget about it, it was land of the zombies.  I get the feeling Im not pleasant when I dont sleep. LOL!  I dont have anymore huge red bumps now they are a nasty light brown scars  I sure hope over time they will heal more and fade out.  Ive been at a few events where pics were taken and you can see it all over my arms.  Yeecsh!. But I itch off and on but it does seem better, I almost feel like I should say that with my fingers crossed.  Hubby went to dermie, he was a bit surprised at his skin and said it looks like a reaction to bug bites like mosquitoes!.  They are not mosquitoe bites and I thought Im so glad I wasnt there with him.  Im so losing my patiences with this guy.  He took another bipopsy though so lets see what comes up. How did your run go, any problems after?  Anway I hope you are better and your meds work, keep me updated.  --Dondi
Title: Re: Grover's disease
Post by: blizzard8121 on Sunday September 07, 2008, 12:33:44 AM
Hi, I'm new to the group. I was diagnosed a little over a month ago but had Grover's since May 08. The itch is tolerable now, but wasn't for about six weeks this summer. It is good to find others who have heard of and understand Grover's. I'm 44 and female.
Title: Re: Grover's disease
Post by: socalmom on Sunday September 07, 2008, 05:15:02 PM
Blizzard,

Welcome. I'm also 44 and female.  Are you fair skinned and/or live in a sunny environment?  We've noticed a lot of us have had this in common.

Socalmom
Title: Re: Grover's disease
Post by: blizzard8121 on Sunday September 07, 2008, 09:19:43 PM
Hi again,
     I live in Michigan. I never even had a tan until 2005 - never a burn. I have alway preferred the shade. I did get a summer tan again in 2006 and 7, but not this year - too itchy and a lack of motivation to do much of anything. My skin is moderately dry. However, My body feels dehydrated frequently. I noticed hypothyroid mention a few times. I have had that since 1991. I also have CREST scleroderma, another autoimmune disease. I did have a serious balance problem in 2006-7, but after about 9 months that cleared on its own. I have mitral valve prolapse and a lot of allergies. I also have always craved salt, thus have a fairly high intake of it. I cannot think of any other possible connections, but I'll keep reading just in case.
Title: Re: Grover's disease
Post by: bjb on Sunday September 07, 2008, 09:31:13 PM
Blizzard8121,

In all my reading and research over the last few months hypothyroid can be tied to chronic hives and other rashes.  I thought it could be my thyroid that was causing problems, but my thyroid test came back normal.
Good luck.
Title: Re: Grover's disease
Post by: Dondi on Sunday September 07, 2008, 09:42:41 PM
Hi Blizzard-  Welcome to the group. I have mentioned hypothyroidism, I was apparently subclinical for a long time before it became really bad, but my endo didnt want to treat me  due to prior MI.  Sometimes I wonder would this have happened if he had treated me.  But a lot of thing happened  healthwise prior to the grovers breakout.  I saw my GP doc recently and brought him up to date and this all, the grovers and the hypothyroidism, and he mentioned that he has seen hypothyroidism really do numbers on peoples skin, so he wouldnt rule that out altogether.  Blzzard were you sick at all prior to breaking out in th grovers rash?   I noticed someone also posted about thyroid and I did have a allergist immunologist tell me the same thing about rashes and hives, but he didnt know much at all about grovers but at least had heard of it and I was the first woman he had seen.  He also didnt know what to tell me.   --Dondi
Title: Re: Grover's disease
Post by: blizzard8121 on Sunday September 07, 2008, 11:20:40 PM
Thanks for your comments.  I was not sick before I started getting the sores, but it wasn't as simple as that. My face started itching May 13 - no rash. It kept getting worse, then my arms started itching, no rash. At some point my back started itching. On June 9 I got some sores on my chest with no itch, but thought it was from the Doxepin the doctor had tried for the itch. I stopped the Doxepin and just used Benedryll (spell?) and Xyzal for the itch - they helped some...not much. The sores continued to multiply on my chest and I got a few on my back. Then the end of June I got very sick with 104 temp., low platlets, high liver enzymes and started bruising like crazy. By that time my legs and butt were itching more than my face, arms, or back, but my back was plastered. It was my legs and butt that had hundreds of little bruises from itching. The doctors were looking at autoimmune hepatitis when all the blood counts returned to normal. A few weeks later, a doctor finally biopsied my back in three places. The lab sent it away to a cancer lab. At some lab, two weeks later, I finally got the Grover's diagnosis. And you all know the story...no doctors that had heard of it much less treated it, very little information on-line and what is there is repeated on all information sites, etc. Then, I found you and gained some comfort in the company. In all, I had well over 100 sores on my back, around 30 on my chest, less than 20 on both my arms, less than 10 on my legs, and about 15 larger ones on my butt. My butt has never seen the sun. Currently I have less than 20 altogether and itch mild to moderately everywhere. But in comparison, it is tolerable and it wasn't in June and July. I did do a 30 day treatment with oral steroids - 60mg for 5 days, then 50 mg for 5 days, and so on down. I had about 2 weeks itch free during the last week of steroids and first week off. Then the itch has slowly returned along with some sores. The doctor that prescribed the predisone did so prior to my diagnosis.
The unusual thing I have is 1-3 sores in my each of my ears and very dry and itchy eyes, but no sores on my face/eyes. My eyes were so dry in June that I could not sometimes open them without drops every 15 min. and they itch like crazy. When I wake at night sometimes it is difficult to open them even still. Have you ever heard of this? I finally talked to a doctor who has treated Grover's and he didn't think it was related, but I don't have confidence in doctors' opinions because sometimes it seems like they have just read their info on the Internet and have treated so few as to really understand it. I'm sure the ear thing is Grover's due to the sores. My face looks like I was time warped 10 years older since this started - tons of wrinkles under my eyes due to the dryness. Hope this helps those of you who know more than me with your collected data.
My thyroid has been regulated with medication for years and is tested yearly. Blizzard
Title: Re: Grover's disease
Post by: Dondi on Monday September 08, 2008, 12:09:32 AM
Hi Blizzard-  If you have been reading the posts, people try to figure what they may have in common and related to what the sites tell you has to do with grovers.  Ive had my share of sunburns in my life and Im fair and blue eyed, but I also have type 2 diabetes and diabetes can cause dry skin and heart problems that I take meds for and frankly I dont deal with stress as well anymore, so who knows my body can just be have a big old rebellion going on.  I became hypothyroid and went from having a TSH of 5.8 to 13.9 and a month later shot up to 39.8  since you have it you know how high that is and I tested positive for antibodies on the TPOab test  ( think I said that right) I started synthryoid in April. I also was tested for kidney and liver illnesses,cancers etc.  I started itching badly in Jan on my thighs and back then the red bumps  came out on my arms really bad and slowly over the weeks skipped around, arms, chest, back, legs, and stomach,chestand butt were the worst  Ive been using clobex and ultravate off and on when really necessary.  Ive also have tried aloe and vinegar, etc.  Ive used a few other steroids too.  I did discuss Prednisone but the dermie said it will either work or it wont and if you breakout again after your done then you know not to use it again, but since Im diabetic I didnt want to deal with the elevated sugar from the oral steroids.  All in all this whole thing stinks and there can be so many reaons for it its just trying to figure is it immune , stress or having been exposed to something, who knows?!  I asked about being sick cause it had been a tough year being sick often and stressful and I hadnt been sick for a long while before. Im just as sorry you have as I am for myself for having it.  It is difficult not having Drs who know what your talking about.  I had carpal tunnel surgery and when I went for pre-op the physicians asst said oh yeah grovers thats a diabetic thing, and then she starts looking at my face and I said what are you doing and she said how come you dont have any on your face?  I thought are you crazy!  Thank God I dont have them on my face.  She was mixing it up with something else.  My gP and endo and cardio and surgeon never heard of it before. 
Title: Re: Grover's disease
Post by: bjb on Monday September 08, 2008, 12:59:00 AM
I know this may sound crazy to alot of you and I could be very wrong with my comments.  I have seen many derms over the last few months, only one felt like the diagnosis from pathology was correct in the diagnosis of Grovers disease(coincidentally he was the only one who really did not look at my bumps)  I have since done alot of research online, libraries and with all docs involved. The general feeling is Grovers disease gets diagnosed frequently and is not necessarily the true diagnosis.  There are many diseases tied to your thyroid that are not Grovers and can be treated with the proper meds.  If you read through most of the threads here, everyone seems to be a little different with symptoms and treatments working.  I also think this is why so many derms are having a hard time treating Grovers. I suggest research all your symptoms and look for a derm connected with a teaching hospital.  I am blonde, blue eyed with very dark skin.  I have lived in Florida all my life.  I have only recently developed allergies and have no other autoimmune disorders.   I originally thought I had autoimmune problems but I misread my test results.
Dondi, I'm not sure if it was you but I also had Menengitis twice.
I'm definitely not an expert and I'm not trying to mislead anyone.  I have just learned to be my best advocate and do the research.
My final diagnosis was chronic hives.  Not fun either.  I am on cyclosporine, atarax, and was on doxepin.  I am currently weening off some of the doses.  I can tell you I feel so much better.  I just need to send the hives into remission.  Apparently it takes some time.  I had a miserable summer with the bruises from itching, no sleeping, and despair from the thought of no cure.
I wish all of you the best of luck!
Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 08, 2008, 01:30:48 AM
Dondi,
I've read about 1/2 of the posts, skipping from the oldest to the most recent due to time. I appreciate the wisdom from those who have experimented for years. Sometime this week I plan to print and compile some of the more helpful hints to help me remember what is good to try and what isn't.
My sister recently dealt with extremely high TSH levels and is now regulated. I have never had extreme numbers because it was caught early. Good luck with that.
I remember thinking the sores seemed to move around. Before diagnosis, I would joke that the itch/sores would just work through my body and go out my toenails and it would be over!!! hahaha. At this point I'm very grateful for the Prednisone because it kept me from going crazy. I may live to regret it though, time will only tell. I remember reading some posts suggesting steroids were not a good choice. So far, I can live with the itch since prednisone, and had felt like I couldn't in June and July.
Fortunately, I do not have diabetes. My CREST is in the early stages and I only experience Raynaud's (where my fingers turn white and blue). From about July 9 until Aug. 10 my right finger and thumb were pretty much blue all the time, but a heating pad at night has helped them to be normal some of the time now. Since Raynaud's has been acting up and Grover's developed, I know my body is also changing. I don't feel particularly stressed. I just remembered though, I did have bronchitis from January through April and an x-ray showed a spot on my lung that still is there - probably due to scarring. So I guess I was pretty sick, but it didn't slow me down nearly as much as the itch! Blizzard
P.S.  bjb, I am planning to see a derm from a teaching school soon. I'm just awaiting the referral. Hopefully, he will have clearer answers. I too question my diagnosis, but after a lot of research, I think they are probably right. I definitely did not have hives. At one point, I had thought it might be lymphomatoid papulopes (spelling?) Several doctors have told me that steroids will at least temporarily give anything a kick. So the fact that it helped means almost nothing as far as diagnosis. I too, have spent endless hours on-line looking for answers. This site has been the best I've found so far. I had encephalitis as an 18 month old, but never menengitis.
Title: Re: Grover's disease
Post by: bjb on Monday September 08, 2008, 02:03:10 AM
My hives never looked like the pictures I saw online, they just looked like lots of small red bumps that would randomly pop up and travel all over my body, they never stayed in one place too long.  The itching was unbelievable.  The closest I found to what I was experiencing was on the Tide website message board.  There wre many people going through what I was going through.  Many of us made several ER visits.  Prednisone helped at first but after awhile it quit working and I got much worse.  Doxepin was the best for getting rid of the itching.  The itching stopped the first night I took it.  I noticed on the doxepin discussion board that there were some Grovers patients taking it and experiencing the same relief.
Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 08, 2008, 02:25:00 AM
brb,
Interesting and worth checking into. I'm hoping tofind out more when I see the new derm. My spots reminded me of chicken pox, sort of. They started as a bump or pimple or spot and over time they crusted over. They did/do not go away quickly though. In fact, they seem to recur after seemingly healing multiple times. They take weeks or more to go away. I took Doxepin in June for about a week and it made me very tired. I actually broke out in my first sores after taking Doxepin for about 2-3 days. It did not help the itching at all. It was another 6 weeks before I was diagnosed. Nothing really helped the itch when it was at its worst. I took the Prednisone for several weeks before I got relief from that. Blizzard
Title: Re: Grover's disease
Post by: Dondi on Monday September 08, 2008, 04:34:37 AM
Blizzard and BRB==   I just finished reading both of you, and I have to say a lot of the same feelings and emotions.  I have the small little hives, and actually started with that which lead me to believe I was having a allergic reaction to something and originally I thought it must be a drug I was taking as I take quite a few, but the doctors told me cant be if you were to be allergic it would have happened ages ago and I still dobted that and tired quitting some for a while to see and it didnt change a thing.  I have had so many thoughts about what it could be.  Unfortunately itching is caused by so many things.  The dermie was telling me I had winter itch even though I said I get hives off and on.  But then the rash came and as you said Blizzard it looked like pimples without heads just annoying and intensely itchy area and they would bleed so easily and took forever to heal.  I found neopsorin did speed it up a bit,but my skin also burned at times and muscles ached and I would get a strange little sensation that would go through me before the hives would come out.  I didnt have meningitis one of the newer bloggers mentioned that cause I aksed her if she had been sick,  I had stents put in my heart ( I actually thought could I have been allergic) I had a infection after that from the procedure, was on strong antibiotics I had a really bad and long recovery from a ear infection again strong medicine, was having some mionr itching on my back and legs and tons of stress, then a sore throat and viral thing, two weeks later a nasty cold and itching was getting more intense and then boom bigtime itching and then rash.  I was up to the fourth visit with the derm before he got around to doing a biopsy and then he acted like well cant do much but this and oh you could try steroids blah blah but hey its just itchy bumps and I just want to strangle people who havent a clue as to how much your life is disrupted.  No Im thankfully not dying.  Its not the worse thing, yet!  And I went through times also when I thought this is crazy it cant be this and then I start reading again and realize yeah it probably is.  I also have a husband having skin issues of his own also itching and my daughter has some itching going on and my son and its all different supposedly.  So have we all been exposed to something?  Is grovers a symptom as someone said to me here?  I dont know the answer, but it is frustrating to say the least and it is nice to at least have other people know what your talking about and dont go you have what???   Take Care    Dondi
Title: Re: Grover's disease
Post by: jd1 on Monday September 08, 2008, 04:23:30 PM
All,

It seems that there is sort of a new generation of sufferers on this website.  As I scan your posts, and having read almost every post on this thread, I feel compelled to mention just a couple of things.

I think that everyone who has posted about the use of steroids and Grover's has found that ultimately the side effects of the steroids combined with the rebound made that line of treatment not worth the short-term benefit.

Grover's is very rare (ever?) on the face.

Misdiagnoses of skin diseases doesn't seem to be uncommon.

Some of the stuff you all are discussing has been discussed in the past.  I think that on page 13 we started making progress on a couple of different treatments, and I mention that in case you might be recreating the wheel, so to speak.

Good luck with the derms at the teaching hospitals.  Several of us have had experience there.  The reputation may not live up to the reality.  More than one of us found ourselves helping them rather than them helping us in that we would up on "grand rounds" where 20 - 50 studends came in to view the disease.  In other words, some of us were a learning tool for them.  I can't remember in any of this thread or any discussions outside of the thread where anyone actually obtained thoughtful, creative, helpful treatment from those "teaching hospitals."

Good luck to all.
Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 08, 2008, 07:26:49 PM
Thanks JD,
   Since the itch slowly has been getting worse since steroids, I seems it may have been a temp. fix. They actually gave me that treatment prior to my diagnosis. When you say rebound, does that mean it is going to come back worse - or just come back? And do you remember what some of the negative side effects of steroids were? I am not sure that I have a lot of confidence in seeing another derm, but do want to see him just because he has seen Grover's before. It would be nice to see a doctor that has at least heard of it. And hopefully, if they learn from me than at least someone down the road might gain from that. For me, there is comfort in that just like there is comfort in this group. And I think there is a reality check to the long-term suffering of this disease with newcomers, but also a  hope...that probably isn't realisitic due to the newness of our search for answers. I think we might just need to hash over for the first time things many of you came to terms with years ago and am glad we can gain from your previous experiences. I can only speak for myself, but I greatly appreciated your comments and help due to the fact you are an expert compared to me. I'm sure as this itch waxes and wanes, I will be reading and rereading many of the 38 pages to find what has worked for you all. This is a wonderful site. I have searched so many places only to find repeated info written by experts that really don't understand. You understand and can relate. Currently, I'm just curious what others have experienced with the Grover's compared to what I have had. I am glad that it doesn't cover your face! So far I have not experienced any sores on the palms of my hands or feet. my face or my boobs. From what I have read it is uncommon in those places. The hardest part about the back is it is hard to reach, but at least it is not embarrassing to itch there. Have you ever heard of the sores in the ears? I have 3 in one ear and one in the other. I remember reading someone's post of having them on their scalp. So far, I have only noticed one sore on my scalp and it hasn't really developed far enough for me to thing it is the same thing. My ear sores do mimic the sores elsewhere though. They take forever to heal and I tend to rub them off with scratching only to have them return. Please bare with me and the others. There is so much information on your pages, it is very overwhelming. I wish there were a live, in person, group because that would be easier to help remember who is who and who had what symptoms and who tried what. I am only just beginning to connect with the people and their comments after several days of rereading and still have about 15-20 pages that have gone unread due to time constraints. Thanks again. Blizzard
Title: Re: Grover's disease
Post by: jd1 on Monday September 08, 2008, 08:34:56 PM
Hey Blizzard,

You are right - there are many people with different experiences.  I think it is fairly easy for me to remember because I was reading as each person posted, not trying to absorb everything after the fact.

Rebound from steroids.  Could mean comes back or comes back worse, depending on who you ask. 

You asked if I've ever heard of Grover's in the ears.  I have not.  There are elements of what some of you are describing that make me think that some of you might not have Grover's.  Or you could have Grover's and something else.  Like I said, misdiagnoses in this area seem to be fairly common.  Personally, my first biopsy came back either Grover's, Pemphigus, or Darrier's, and it wasn't until UCSF did the work that I received a definitive diagnosis.

Yes, there is at least one person who posts here who has something on his scalp.  But I think that that has not been diagnosed as part of his Grover's.

Of course you want to discuss current symptoms and connect and get to know each other.  I just want you all to know that we have made progress on this thread, and there are several of us who have found treatments that have greatly improved our disease and quality of life.  I would hate for someone to start here and get stuck in symptoms, topical treatments that don't work, and doctors who are clueless when there are treatments that actually can make a difference.  J
Title: Re: Grover's disease
Post by: Dondi on Tuesday September 09, 2008, 01:34:42 AM
Blizzard-  I have had a few bumps in my head, the woman who does my hair saw them, all I knew was my head was itching like crazy.  The Dr gave me a shampoo, I think loprex, wasnt cheap even with insurance.  To tell the truth it just needed to run its course, I have had it on the back of my neck and the tops of my feet.  The one place I can say never itched or had a mark is the bottoms of my feet and the palms of my hands.  The tops of my feet not long ago started getting little bumps and itching and burning and Im pretty sure it wasnt athletes foot.  I think you can get it almost all over, and that people get it to different degrees.  I know someone else posted they had it in there scalp and possibly a third person who posted only a few times, way back in these posts.  My husband said I should call the center for disease control and see if they have any advice or can see if there is a doctor in the area that knows about it.  I may try that but I have a feeling its going to be a no go.  I see your point on seeing someone even if it means it may help someone else in the long run.  I just dont know if I woud have the patiences anymore.  As for steroid creams, there are draw backs, If used in excess it thins your skin, it makes it drier, you can become desensitized so you need breaks from using it to kep it as effective.  I think if you use it for long periods of time it can effect your sugar levels if your diabetic as I think it has with me and I do believe it can cause weight gain if used in excess for a long period of time.  If your trying to cover large areas it stands to reason it can be a problem, and I dont think the doctors think of that, mine hasnt warned me at all, but the pharmicist did.  A few of you mentioned doxepin and said it helped but knocked you out, but were you able to use it long enough to have a decent reprieve in between  or no?  I know someone mentioned weight gain from it, just cant remember who, and after howlong using it?  JD1 may have a point to in saying it may not be  the right diagnose or its more then one thing going on.  I think that often and then I think oh it must be grovers, but maybe it is something else with it too.  The whole thing can literally make you dizzy.  ---Dondi
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 09, 2008, 02:23:02 AM
Dondi,
   The whole thing can make you dizzy. I have been reading every minute I can and still have not made it through all the posts and have a hard time remembering who is who since new people are added regularly. Currently, I am going through the mercury posts. It is like watching a show that keeps getting continued and you don't know what is going to happen....
   I'm sure that I have grover's b/c I can relate with so many people here. I think the eyes might be allergies or sjogren's rather than grover's. Many with scleroderma get sjogren's and there isn't much on it in its early stages. I imagine I have more than one thing going on.
   I only used the steroid creams a few days and didn't seem to get much relief. And like many here I tried about every anti-itch cream on the market before finding this site. Alveeno creams, straight vaseline, and caladryll were among my favorites, but none provided much relief. The posts here confirm that and I wished I had saved my money. -- I did gain about 5 lbs. with oral steroids in about 5 weeks.
   JD: I will have to continue the stories/posts tomorrow night and the next and the next. I wish there were a website with the conclusion. Jessica, have you ever thought of doing that? I wouldn't want to miss reading all the posts, but a quicker answer would be sooooo wonderful. Did your Grover's return after the chel...treatment? Did you have long term negative side effects? It seems like it has been about 2 years since you used that. I think I'm on post page 21 or so and I know I've read some of the last several pages. I also skipped around some which wasn't a good idea because I don't remember things. I should be patient because what took you guys  years will only take me a week or so, but it is so nice to find a site with answers and people who understand.....I remember reading one of your posts earlier that was kind of a conclusion, but don't remember what page or what it said because I was still absorbing it all. It is great that you are still around helping us out. Thanks, Blizzard
Title: Re: Grover's disease
Post by: kt on Tuesday September 09, 2008, 02:52:22 AM
Hi All, I just wanted to give you some good news, and hopefully help some of you out. I have been using the dovonex for 2 weeks now..and have given up the gym/sweating. Mine is much better..keep in mind, mine never itched. The few I had on the back of my legs almost gone...still have it on my stomach and a little on the middle of my back..but so much better. I aso use Eucerin intense therapy lotion. Derm recommended it. another thing I do is put the lotion on before i get in the shower..then I loofa the area slightly in the shower..but if yours is really aggravated by itching..this may not be a good idea. Seems to look worse right after...but calms down after..and then it seems smoother, not so bumpy. I have read the cream has taken 3 weeks to clear the grovers (for the few it's worked for) so I'm crossing my fingers in a week I can say the same.

Good luck and I will keep you posted!!

KT
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 09, 2008, 03:58:57 PM
Blizzard, I can't create a website with conclusions...I have children and a full time job already!  (Doesn't that equal 2 full time jobs?)  I monitor this site so that as people come and add their stories I can let them know that we have made progress.  If everyone starts on page 38, no one would know that there was helpful information 20 pages back.  And the "conclusion" changes with the passage of time and for each person.  For me, Dr Dantzig's theories and treatment were it.  I have had isolated flares since then, which have passed.  This year, my skin has been consistently really good.  Chelation is an ordeal, and it was very hard finding a doc who would support me in this.  I found chelating exhausting, but I am really glad I did it for both my skin and my overall health. 
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 09, 2008, 04:06:48 PM
JD,
   Thanks again. Yours and the others' posts have been very helpful to me. I understand the time thing. I don't work, except volunteer, but I do have kids! and yes that is a full time job. I did find the post where you had summarized recently on page 33. I copied and pasted it to word and saved it. I will now just keep current. I am not sure if I will be able to try the chelaton due to the expense. Hopefully my insurance will cover and my doctor will cooperate. I'm sure I will persist though because any relief is helpful. Blizzard
Title: Re: Grover's disease
Post by: bjb on Wednesday September 10, 2008, 02:32:44 PM
Dondi, Mine also started in my scalp,  which is common for a very severe allergy.  I was told that because your head is such a vascular area. My feet broke out and itched and burned badly.  I could barely sit in a car with cloth seats because my skin had become so sensitive.  Forget sleeping! The feel of sheets touching my body nearly killed me.  I was getting maybe two hours of sleep a night.  I had to sleep sitting up on a leather couch and the air conditioner had to be turned down very low.  I am curious, my last derm and allergist did a scratch test on my arm, basically like a tic tac toe scratch, and waited a few minutes to see what it would do.  I welted up both times.  They both said I was in a highly allergic state which confirmed the chronic hives.  I , like most of us am not sure which diagnosis is correct, but I do lean more towards the chronic hives.  My IGe's still remain high but nothing else does.  JD1 is right in saying that Grovers is extremely rare, and if your read the literature it is more rare in women.  What concerns me is the number of us on this board that are women in our 40's diagnosed with Grovers.  Sounds like there needs to be a new study done on this disease.  I had mercury levels tested months ago and that came back low.   However,  I personally feel like I have been exposed to some chemicals that my body has not been able to handle.  In effort to go green, we switched to front loading machines and He detergents.  One week later my problems started but started off slowly with just a few bumps in my scalp and along my hairline.  The front loader never completely rinses your detergent out and most detergent companies have changed their formulas over the last year to a more concentrated form. 
I tried switching my diet to eliminate everything as mentioned in earlier posts and that did not work. I agree with JD1 on another point she brought up, and that is that you have to go in prepared, you are your best advocate.
I am doing so much better with my meds but I am very concerned about what will happen when I come off.
I am always looking for input.
Bobbi
Title: Re: Grover's disease
Post by: bjb on Wednesday September 10, 2008, 02:51:53 PM
Sorry to babble, but one other interesting tidbit I found is many women will experience some continual rashes when going through the stages of menopause.  According to my hormone test I am not yet there, but I do find it interesting that we are all pretty close in age.  There are message boards and sites for menopause rashes and thyroid rashes.  You all may want to research these also. 
Bobbi
Title: Re: Grover's disease
Post by: jd1 on Wednesday September 10, 2008, 04:14:41 PM
Bobbi, I didn't mean to imply that Grover's was extremely rare - I have no way of knowing that.  From what I have read, it is extremely rare (if ever) on the scalp.  Re the Hg tests.  If what you base "low" on is a blood test, you should know that the blood test is not an accurate measure of the body's Hg toxicity.  There's a ton of info online related to Hg and autism that discusses these issues.  Andy Cutler and the Autism Research Institute are the sources I rely on most.
Title: Re: Grover's disease
Post by: Dondi on Wednesday September 10, 2008, 05:35:07 PM
Hi Brb--  When I went to allergist he also did the test your talkng about on the arm and I had been curious if I was allergice to foods I waseating, so he tested me for the ost likely of what I ate normally ate to cause a reaction, fruits, veggies, wheat.  negative, he tested me for enviormental  stuff but wasnt clear on what those were, and the only thing I reacted to was what he hoped I would the histamine.  Got a tremendous bump from that.  He tole me his thoughts on it all, thathe thought grovers was rare and that not much was known about the causes and the cure if any.  He also explained about thyroid issues, that some people with positive antibodies can have these hives etc.  Only thing is Ijust dont get hives and the hives are temporary they go away and come back but at least they go down.  My scalp started to itch about 5-6 weeks into this breakout and the doctor said he didnt think it was that and gave me a shampoo for like sebbhorhea cause I was flaking like crazy too.  I do not normally flake or have dandruff.  But  I had two of those nasty looking reddish purple marks in my scalp which matched my arms. In the begining I have lso had small blisters on my forearms and hand from scratching and a couple around the mouth and inside lip those were really small and lasted a day.  Havent had the mouth ones since. So it is confusing, I could be having thyroid skin issues and grovers at the same time.  My diabetes was way out of whack also while all this was going on probably due to stress on mybody and mind,  and probably also contributed to the dry skin as well.  I have been using a sugar scrub once or twice a week that has lots of oil in it, and a shea butter with argan oil and a body cream  also with same stuff.  I never could use all of this stuff without breaking out.  My skin soaks it up and I  am reapplying throughout the day.  Im not showering every day either and only lukewarm to cool water.  I am 51 and as you say not in menopause yet and I have wonder about the age range also. I do think its possible there are hormone and immune issues involved and who knows what else. I didnt knowyou could get menopausal rashes too, gee dont woman go through enough already?? I also know what you mean about the sheets and stuff touching your skin in general, fun waking up to spotty blood spots too, gross.    Some have talked about metals in the system or chemicals and I havent gone that route yet but may be soon. Did anyone explain to you why you may have had mercury in your system?   Actually let me put that question out there for anyone to answer, Im really curious as to how this happens, dont mean to sound dense.  ----Dondi
Title: Re: Grover's disease
Post by: jd1 on Wednesday September 10, 2008, 07:28:30 PM
Dondi, re how Hg gets into the system:  It is in our environment, therefore, it is in us.  We eat it in our seafood.  We breath it in the air.  (Check out online San Francisco Chronicle 7/24/08, "EPA urged to police mercury emissions").  There was an article a while ago in the Wall Street Journal tracing the mercury in a car part that gets recycled that becomes part of a mining process far far away where Hg is burned as part of the mining.  That Hg then circulates the earth up to 4 times before coming down in rain water.  There was an article in a Cape Cod paper questioning where the Hg pollution in its lakes was from - and tracing it to coal burning plants in the middle of the country.  (I may have some of the details wrong there, sorry, I can't find the article)  It is in our soil, therefore, it is in our food.  (Polluted rain water and used to be in fertilizer)  It used to be in products as crazy as contact lense solution.  It is in our vaccines.  It is in our mouth in those silver fillings that the ADA finally admits do leak Hg.  (Another person who posts here told me that her dentist told her that if he were to remove her fillings and throw them away, he would be fined $40,000.  Apparently the powers that be think that the only place where Hg is safe is in our mouths!)  This is just some of the sources.  If you decide to read up on this issue, I think you will be disgusted and mad. 
Title: Re: Grover's disease
Post by: socalmom on Thursday September 11, 2008, 02:09:24 AM
Hi all,

I have been on Dovonex 2 x daily, reduced my heavy sweating to 3 days a week and on a mild antibiotic.  I have almost no itching.  I also need to note that I started Lamisil for an infected toenail.  (You never know...I read somewhere that an antifungal could help Grovers) I am thrilled and trying to remain optimistic that I can remain itch free until this goes into remission.

I have found that it's interesting that more females seem to be writing in this forum as of late.  All of us appear to be in the 40+ category. I have not been able to detect any differences in severity with hormone or stress fluctuations. I did see someone comment that Grovers does not go on the...uh...chest...OK, breasts. I need to contest that suggestion. Thank goodness that's under control!  :o

Take care!

Socalmom
Title: Re: Grover's disease
Post by: kt on Thursday September 11, 2008, 02:23:24 AM
Hi socal mom,

Bingo! dovonex and sweat free seems to be the magic solution to mine as well!!  WOOHOO. I'm feeling very optomistic that if it continues to heal at this pace, in a week or two, it will totally be cleared. Let's keep each other posted!!

Title: Re: Grover's disease
Post by: bjb on Friday September 12, 2008, 12:37:35 AM
What is dovinex..spelling...?  I too had whatever I had all over my breasts!  I worry sometimes about taking the cyclosporine because I volunteer at my daughters school.  First grade to be exact.  You can imagine the germs I'm in contact with.  Thank you ladies for the support you have been providing.

Bobbi
Title: Re: Grover's disease
Post by: kt on Friday September 12, 2008, 12:49:43 AM
dovonex is a cream the is a vit d derivetive (sp?) ..used also for certain types of psoriasis. it's worth a try.
Title: Re: Grover's disease
Post by: Dondi on Sunday September 14, 2008, 01:53:48 AM
KT  Glad the dovonex is helping you and SoCal-  BJB  sorry I cant writing BRB  just caught that,  Well my hubbys biopsy came back inconclusive again but mentions lymphocytes and eosinophils.  Drug reaction etc etc.  Conclusion inconclusive.  At least some of the awful lumpy bumps he has are clearing hes just really itcy still but is now at least considering some moisturizer instead of just the steroid cream, and has agreed to cut back on that, thankfully.
I decided to reread a lot of other things and went back and found things I wrote in a notebook and realized once again it is grovers and again reread derm nets nz  site and everything they say is dead on,  whether its helpful in getting rid of it remains to be seen,  I just cant live paranoid and think something is invading my body and slowly making me sick.  Although I do believe that something set me off and maybe the grovers is a litle contagious and that is unknown.  But I do feel the fact that a bunch of us women here are within a certain age group and all have been ill  although nothing really death defying I believe if you arent a sickly person to begin with and now your immune system is feeling taxed and stress is around you, and maybe our hormones are possibly shifting that it plays in.  I am having antibody problems so is BJB and as I said we all mentioned having some illness in the past year.  Well I did do some reading about dermatitis's and if I didnt get it wrong things like virus's can set things off in motion.  The body is a funny thing.  Maybe sweating really also brings it out in us.  Actually the one thing I do find as a diabetic that when I exercise it actually causes my blood sugar to temporarily go up for several hours, I benefit later from it but it seems like it stresses my body out for a short time, what I mean isnt coming out exactly like I wish.  Also the fact that Kt and SoCal seem to have benefited from the Dovonex (Calcipotriol) well the site I read said it may be bebeficial and it was.  I spent a few hours at the beach in the late part of the afternoon and got a little sun didnt go in the water stayed on the boardwalk, was even breathing real well I guess from the salt air and wasnt sweating.  And when I thought about it its the best couple of week I had after that, although I am a little itchy again, maybe I need to get a script for dovonex.  The doctor told me this is something that will wax and wane and I guess that is what it will do till it is hopefully gone.  I  feellike all I can do is what I have so far to make me comfortable and we all figure out what it takes for us.  I am afraid to start working out again cause I do start getting rashy.  I had never heard of menopausal hives nor thyroid hives and I have others tell me about heat induced hives and other strange rashes so this whole thing has been a learning experience extradionaire.  I feel like in a way I have lost months to this ridiculous skin disease.  That makes me angry!  I think I may go visit my oldest son who lives near the beach and maybe we will walk on the boardwalk and get a little sun. 
Title: Re: Grover's disease
Post by: CalamityJane on Sunday September 14, 2008, 02:41:30 AM
Hi all: I don't know anything about sweating & Dovenex, but I was prescribed it for my PPP. It apparently slows down the production of skill cells.....thereby helping to eliminate the pustules.

Jane
Title: Re: Grover's disease
Post by: bjb on Sunday September 14, 2008, 06:13:45 PM
Dondi,

I live by the beach and rarely sweat, but still had these terrible bumps and itching. Exercise does not decrease or increase the bumps.   I am very healthy, tall and thin.  Never had any health problems until I moved here to South Florida. I am from North Florida which is a completely different environment.  Actually I am pretty close to the Everglades.  Since moving here I had one really bad bout with bronchitis.  That is it as far as health issues.  As far as heat induced hives, my understanding is they go away once your body cools down.  How many of you would say that your bumps started in your scalp and the rashes often traveled?  Mine would travel within minutes of leaving one spot and go to another. They would be very inflamed, itching intensely, and would often leave the appearance of blood blisters.  I still have some bumps at the base of my scalp but they are not itching due to my medicine.  JD1, I am most curious about yours, does any of this sound familiar to you?  My mother had a very rare skin condition called Cowdens Syndrome, it eventually led to her death two years after her diagnosis. I was genetically tested for that and the test came back negative.  There are no other skin conditions in my family.
My next question is," Did you have the same lab do all your pathology reports?"
I want to be prepared the next time I go to the derm.  I really liked the derm that diagnosed me but the follow up derm I have thinks I just need to give this all time to pass and come off the meds.  He is in a different office.  My insurance doesn't cover the derm I like.
Title: Re: Grover's disease
Post by: Dondi on Sunday September 14, 2008, 08:53:53 PM
BJB-  One of the bad things about writing for me, is I am not very good at conveying my thoughts well.  When I mentioned illness I was referring to minor illnesses, in my my case I hadnt been sick for several years other then heart problems and diabetes, but no viruses of any kind sore throats etc.  My adult children who live here had repeated bouts with strep I never got it.  And then I had my sickie year.  I hadnt taken antibiotics in a very long time and ended up on them several times.  I sweat,  have  since I was born,  When Im in the gym Im drenched.  Im not thin sadly, and I am not acclimated to a warm climate. I just wilt in the really humid weather, hot I can deal with.   I do think when you have been sick whether minor or not your immune system has to build up again.  Things stress the body in ways we dont even think about, besides actual stress.  I break in hives which doesnt aeem to be a part of the grovers at least the dermie didnt figure that one to but thought it was thyroid related.  I never have had anything that looked like blood blisters, what I jad looked like a milder case of what you see on the derm net nz page.  When I break out in hives they do resolve within a few hours, but its not all that, so someone here recently said that it may be other things too and they are probably right.  We all dont have it exactly the same.   I couldnt help wondering if the dovonex , since it has D3 deriative  and sunlight also provides us with D3 if sunlight may be the answer in small doses.  Im going to try and find out.  I do know that people can suffer from vit D deficiencies and not know it unless tested for it and I may do that too.  We all have our theorys and thats mine for now.  Dondi
Title: Re: Grover's disease
Post by: jd1 on Sunday September 14, 2008, 11:34:53 PM
BJB, you asked if any of this sounded familiar to me....no, it really doesn't.  There's lots of discussion now re lesions in the scalp.  Have any of you had those specifically biopsied, and if so, have those biopsies come back as Grover's?  I've been reading about this skin disease for something like 5 years, and I don't think I've ever seen anything where anyone had confirmed Grover's in the scalp.

Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 15, 2008, 01:28:12 AM
jd1,
   I'm curious as to why people refer to the grover's as bumps. Mine are clearly sores that may resemble the chicken pox - but it has been about 15 years since I've seen chicken pox so I could be off there. My sores, since steroids, seem much smaller. Most of them in July were about 1/2  or less the size of a pencil eraser end. Now they are more like the size of a dot of a thin marker. They do seem to start with a bumpy like feeling sometimes that is raised slightly, then they scab, and after the scab finally falls off there is still a bumpy feeling - sometimes rescabbing. They usually last several weeks. But I feel like they are just plain sores. Does this sound similar to what you refer to as bumps. Do grover's usually have scabs like mine? I never had one that had an appearance of a blood blister. Just a note about the scalp - I mentioned I had 1 sore on my scalp, but I never looked at it to see if it was similar. I clearly have them in my right ear, however. I have about 3 in one ear and they seem to be the same as the sores on my arms and back. Another question, I itch everywhere, regardless of where the sores are or aren't. Is that common in grover's. My skin is mostly clear of anything right now, but I still itch - mostly my eyes and ears, arms and back. The itch is back to wear it seem to have started before it became intolerable.  My legs, stomach and butt no longer itch for some reason. I wish the Grover's web sites would take the time to give more examples of how grover's exibits itself in those that have clear diagnosises as far as symptoms. Mayo Clinic has a site in their research section that describes a study done in 98, but something more current and complete would sure be nice. I think I'll contact one of those sites and ask them to give more details for those who are searching that haven't found this site. Thanks, Elaine
Title: Re: Grover's disease
Post by: socalmom on Monday September 15, 2008, 01:36:09 AM
6 steps forward and three steps back.  I took a spin class today and am itchy again. (For those of you that don't know what a spin class is, it's a class on a stationary bike at turbo speed!) Our class is in a room with no ventilation and no air conditioning.  Basically, you sweat your brains out.  I'm going to have to give it up until I go into remission. I've improved so much on the Dovonex and keeping my heavy sweating to only running 3 days a week. The sweating has definitely made a difference in my rash and itchiness.

Thought I'd share the latest.

Hang in there everyone!
Title: Re: Grover's disease
Post by: jd1 on Monday September 15, 2008, 01:55:12 AM
Elaine,

I found great pictures on the New Zealand derm's website.  All I know is my experience and what I've read.  I haven't experienced sores...more the "bumps" that you mention that cover the trunk and bleed sometimes.  I think that many of us scab over.  I have never heard of a blood blister type lesion.  I've never heard of it in the ear.  Itchiness all over - I think many of us have hypersensitive skin.  I don't think it is related to the grover's.  IMHO.  You mentioned being overwhelmed by the stories of the old-timers as you scanned the old pages.  Similarily, I don't have all of the newcomer's stories straight.  Do you have a confirmed "Grover's" diagnosis by biopsy by a good lab?  Do you trust your derm?  (The big question). 

http://www.dermnetnz.org/scaly/grovers.html

Painful pictures.

What bums me out is that I don't think anyone else is talking about Dr Dantzig's treatment, which has helped many in his practice and several on this site.  So people from New Zealand to everywhere else suffer, perhaps unnecessarily.
Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 15, 2008, 02:30:54 AM
jd1,
   Yes, I was biopsied and had a positive Grover's diagnosis - he only biopsied 3 from my back. Whether or not it is trustworthy is beyond me. I did go to a derm in July and he prescribed the prednisone at 60 mg on down 5 days on each dose. But he did not say what he thought it was. At that point the doctors were all more concerned with my liver enzymes being high and platlets being low and the hundreds of bruises I had (this lasted about 2 weeks). Unfortunately, they did not understand that my issue was the itch!!!  He did not accept my insurance so I did not return. I changed to a new gp in August and he did the biopsy that confirmed the Grover's after being at 2 or 3 labs over a 3 week period. By the time I got the biopsies my back was getting tons better from the prednisone. Recently, I was accepted at U of M dermatology. I have not yet gone and I'm mostly clear now. Maybe I have two things or more going on, but it all just started May 13 this year. The pictures you sent look like my back looked. My mother confirmed that - it was hard for me to see it. My arms, legs, chest, and stomach have the sores I described and I can see them. Since I can see them I may have an incorrect perception of what my back really was like. I had about 10 on each leg/arm/stomach and the sores were  spread apart like individual sores, not close like a rash. The sores in my ears are hard to see but feel like those on my arms. Since I could not see my back, I think I perceived it to be lots of sores closer together. But the picture clearly shows that they all do not have scabs and my mom confirmed this of my back. My back was more like a bumpy rash with some scabs. The sores I had on my butt cheeks were three times as big and looked infected. The sores/scabs/etc. didn't bother me near as much as the generalized itch I have that drives me batty. The sores on my back did bleed daily - whereas the ones on my legs/arms/etc. did not. Thanks for the clarity. I remember now that my first gp had said that he thought the sores were different. In fact, I think I have had about four different types of sores. My back matched the far right photo in the second row from the site you posted. Other than scars and a few scabs it is now pretty clear. I indeed will be asking about Dr. Dantzig's treatment as soon as I visit the derm. My gp is very limited in his knowledge. I talked to the derm on the  phone one time and he seemed to know a lot about Grover's. He agreed with you that the dry eyes didn't seem related to Grover's.  My back didn't break out until the end of July after the high fever. The face/eyes/ears were itchy and dry since May. Sorry this is so wordy and I completely understand how difficult it is to follow everyone's different stories/symptoms/concerns. I appreciate your time. It really helps talking to someone who has had it for a long time and can help us understand our similarities and differences. Elaine
Title: Re: Grover's disease
Post by: jd1 on Monday September 15, 2008, 04:54:57 PM
Elaine,  our backs sound very similar - including the part about needing Mom to take a look.  It bugged me that I could certainly feel the itch, couldn't see it clearly.  Mirrors aren't 3 dimensional, therefore, I think it is very hard to evaluate ones own back.

Your skin issues sound like different diseases.  You said that you just got confirmation of Grover's in August, and I believe you are saying that the steroids made it much better.  I am wondering if you will see a rebound after the steroid treatment is over.  Are you still on them?

The liver enzymes, blood issues, and bruising are more important issues medically than the state of Grover's disease.  You know that, right?  Did they ever confirm what was causing all that?

If you ask the derm about Dr Dantzig's treatment, if your experience is like the experiences of the rest of us, be prepared for the doc to look at you like you are nuts.  Not a single one of us who pursued this line of treatment found our docs receptive to his work in this area.  I think they associate chelation with witchcraft or something.
Title: Re: Grover's disease
Post by: blizzard8121 on Monday September 15, 2008, 10:58:05 PM
jd1,
   Yes, I know the other med. issues are signs of something significant, but for some reason when they all came back normal after two weeks it seems the doctors were unconcerned. That led me to believe that I simply had a virus or something - they were only abnormal for a couple weeks and were accompanied by a very high fever and extreme fatigue. Do you think they should retest? I feel fine in that respect.
   I still haven't heard from the derm but am hoping to get in before Christmas. I will be prepared for a hard time, and even more so since I'm relatively clear right now.
   During the last week of July (when I had the fever) the docs gave me prednisone for 6 days - 60 mg to 50 on down to 10 on the last of the six days. The same day I finished that regimen, a derm gave me prednisone again. He said I needed more.That time I took 60 mg for 5 days, 50 for 5 days, and on down. By the time I was on 20 mg for 3 days I was starting to see a marked improvement in my back and in the itch. By the end of the 30 days, I was itch free and remained itch free for about 1 more week. Itch slowly came back and I'm about where I was in March with itch - tolerable but irritating. I have some sores  on my arms, chest and back but nothing like I had on my back when they did the biopsy. I would do the prednisone again based on the relief it has given me. But time will only tell. So far it is tolerable, just itchy. I do get interesting pins and needles type pains that shoot everywhere in my body and sometimes are nonstop. However, Aleve makes them go away. Easy fix. Did you ever experience the pins and needles? Hope this summary helps you recall the details of my experience with prednisone. Elaine
Title: Re: Grover's disease
Post by: jd1 on Tuesday September 16, 2008, 12:06:35 AM
You know, if the prednisone gave you that much relief, and if you haven't rebounded, maybe you will be one of the luckier ones who actually enjoys relief from the treatment.  It wouldn't be a standard treatment if it didn't work for some people, and most of the reading says that the disease is "transient" as in transient acantholytic dermatosis.....it's not called persistent acantholytic dermatosis!  That would be great for you, and I will hope that for you.

The other stuff....if I had symptoms that serious, I'd be looking for the reason.  Just because the emergency has subsided, and therefore the docs' interest is in other places, doesn't mean that you're safe.  But what do I know....I'm not a doc, and in fact, I'm a patient who doesn't trust them much and questions and studies and learns everything I can about what they say about me because of that distrust.  So take my comments for what they're worth.
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 16, 2008, 01:46:11 AM
I hope I am lucky! From everything I read (and I didn't read it all) no one took prednisone for as long as I did. And it seemed that mostly a steroid cream was tried. Is there someone else out there who has had oral prednisone for 5 weeks? I will keep you posted. I am itchy,,,,but I joke that on a scale of itchiness of one to ten- I am now a 4 or 5 and I was a 492.
I cannot find the website for that 1998 study. It might be interesting to those of you who haven't found it yet. It is under Mayo clinic proceedings. Here is a couple paragraphs of interest.

In the Mayo Clinic study of 1998, Results: Of the 72 patients, 63 (88%) were men, and the mean age was 48 years (range, 31 to 85). Lesions were distributed mainly on the trunk (in 71 patients) and proximal extremities (in 25). Heat and sweating frequently were exacerbating factors. Fifteen patients (21%) were bedbound. Concurrent non-dermatologic malignant disease was present in 18 patients (25%). Two patients (3%) had acquired immunodeficiency syndrome. Follow-up in 28 patients (mean, 38 months; range, 3 months to 7 years) revealed that the disease had recurred in 13, persisted in 3, and resolved in 12. Review of the biopsy specimens showed that acantholysis was pemphigus vulgaris-like in 40 patients (56%), Darier’s disease-like in 16 (22%), spongiotic in 12 (17%), pemphigus foliaceus-like in 2 (3%), and Hailey-Hailey disease-like in 2 (3%). A perivascular lymphocytic infiltrate of varied intensity in 64 specimens (89%) was associated with eosinophils in 16 (22%). In nine biopsy specimens with dermal eosinophilia stained for major basic protein, varied dermal cellular and extracellular deposition of major basic protein was present. Results of direct immunofluorescence studies, performed in 17 cases, were negative or nonspecific. CD44 stained acantholytic areas in addition to sweat glands in two of eight specimens (25%).

Comorbidities are summarized in Table 2. A concurrent solid malignant lesion was present in 12 patients (17%), and leukemia or lymphoma was diagnosed in 6 (8%). Two patients (3%) had acquired immunodeficiency syndrome (AIDS). Concomitant dermatologic disorders consisted of skin cancer in 12 patients (17%) and dermatitis in 11 (15%). No relationship was noted between drug intake and occurrence or recurrence of lesions.


.....I'm sure i need to explore what caused the other liver/platlet problem this summer, but I doubt there are many who have seen the doctor as much as me this year..from 4 months of bronchitus - they found a spot on my lung that is apparently just scarring but the pulmonary doc didn't like the sound of my heart and insisted I see a heart doc who did a scope down my throat to do pictures - no tears so no need to panic over the load mitral valve prolapse murmur and all the while 4 months of itch and sores and ... and I'm relatively healthy and in decent shape, so I feel a little foolish. Elaine
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 16, 2008, 01:53:45 AM
I think this is the address to that article. If it doesn't work, go to mayoclinicproceeding.com and then search for grovers. It was on the top of the second page of matches. Hope this helps some of you.

www.mayoclinicproceedings.com/inside.asp?AID=2529&UID=
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 16, 2008, 02:11:00 AM
My apologies to Bunnie who described this in much greater detail on page 35.
Title: Re: Grover's disease
Post by: Dondi on Wednesday September 17, 2008, 03:31:22 AM
Blizzard--  Originally Bunnie had sent me a link to the Mayo clinic site and I just had too much going on to completely read it through, but I did tonight and all I can say is boy I really do have a classic case of Grovers.  I have had a real AHA week!  I do understand in my case how this came about, of course I havent a clue on the cure.  Im praying Im not going to be the kind who  continually gets it back. I wish that for all of us.  --Dondi
Title: Re: Grover's disease
Post by: blizzard8121 on Sunday September 21, 2008, 02:13:40 AM
Dondi, I'm glad you got the time - it was a very informative article for me because it was specific. So many of the sites that talk about grover's are vague and generalized. I'm so glad I found this site too, since noone I know has ever heard of it...
Elaine
Title: Re: Grover's disease
Post by: pbt on Sunday September 28, 2008, 02:38:17 PM
Good Morning All!

I am recently diagnosed with Grover's disease, and since that diagnosis, have read and printed for further review this entire forum.  First of all, Thank You!!!  This is the best information and help i have found on the web!  jd1 you seem to have been here since the beginning, and Bunnie, your explainations--in plain language!--are very helpful.

My situation:  Female, age 71. Rash began in February while on a cruise.  I saw my family doctor in March and used  Fluocinonide.  Not better and saw my first derm in May.  She biopsied and results were not specific, indicating possible bite or drug reaction.  I was treated for scabies using Permethrin Cream twice, along with my husband.  The usual SOP.  No improvement.  I was also treated with a course of Prednisone, which at the time I thought was a miracle drug because it stopped the itching!  Unfortunately, both the rash and the itching returned, and I had a longer course of prednisone, which this time was not nearly as effective.  I was told that it just takes a long time to clear up.  The itching became unbearable again so off to the Derm.  The doctor I saw first was out of town so saw her partner which made me happy.  A new pair of eyes.  He biopsied my back----------which was much worse by this time, and sure, enough, Grover's disease.  He called me--himself!!----and we talked for some time.  He encouraged me to do the research and bring any questions when i see him this coming Wednesday.

I would so appreciate two things if any one has the time: 1. A list of meds and/or OTC that have helped with itching, and 2.  Questions for the doctor which might help me.

Thank you all in advance for any help, and in arrears for all the help you have already provided!
Pat
Title: Re: Grover's disease
Post by: jd1 on Sunday September 28, 2008, 04:17:42 PM
Hi Pat, welcome.

If you've printed out the entire thread, then there is nothing else that I can tell you that I haven't already posted.  I'm a big believer in Dr Dantzig's theories and treatments, which have left me with normal skin, although there is the occasional flare to deal with.  At least one person has obtained relief from Accutane, and I think a couple of newcomers were having success with Dovonex, although that specifically did not work for some of us who have been here a long time.  One person has been trying UVB treatments, but he hasn't posted for a while, and I don't know if they're helping. 

There hasn't ever been a big consensus on any drug, systemic or topical, that has worked to help the itching.  Mostly the posts on that issue have been about peoples frustrations over what has not worked.  Your doc seems to have an open mind, which is fabulous.  Please post back and let us know what direction you decide to go in your treatment.
Title: Re: Grover's disease
Post by: pbt on Sunday September 28, 2008, 10:08:54 PM

Thanks for your answer, jd1.  Somehow I knew it would be you!  I appreciate any and all help I can get and hope others of you will respond with your favorite tricks for itching too.
Pat
Title: Re: Grover's disease
Post by: Dondi on Monday September 29, 2008, 10:55:53 PM
Pat     ----Sorry for your grovers diagnosis, its not fun as you are finding out.  But then no disease is.  I started on steroid meds, ultravate, clobex, olux mousse,  there were two others just cant remember which ones.    Personally my advice is you may need to use some steroid creams if you are really losing your mind, but try not to. I refused to take the prednisone due tot he fact I have diabetes and the doctor wasnt so sure, it would help long term.   I started using things like cold aloe lotion, I had tried oatmeal baths and real oatmeal in a nylon in the tub, too drying.  Vinegar in the bath or on cold compresses is good and the smell does go away, but it helps.  I tried tolook at it as what I would use on a irritating sunburn, but not all of these things were good like milk, not a good choice, itched more.  The aloe and the vinegar were the best and then the aveeno itch relief moisturizing lotion was good.  Luke warm to cool showers or baths and not everyday.  I had to stop using deoderant for a while when my armpits were itching as it irritated it more.  I also applied neosporin or generic version withpain relief tothe lesions and I felt it helped heal them faster cause they do take a while to heal.  Ice compresses is another helpful thing for relieving itching.  Now I use a lot of moisturizing shea butter soap and cream and it also has argan oil in it, I order online the PanierDes Sens products.  I had tried quite a few organic,  lush, etc. products then my daughter brought this hme and it was the least irritating of any of the soaps I used, then I found they had body butter etc with shea and argan.  I use the steroid creams when I absolutely feel I cant deal with it and thankfully it has gotten better, although I do hold my breathe  about it a lot.  I also do take regularly now flaxseed milled in my cereal or yogurt and I try to have good oil on a daily basis.  We are all different and if you read the mayo clinic info, the link is on a couple of posts on the previous page, you get an idea of whats going on.  You end up experimenting for yourself to find what will help you.  And it sound slike youhave a dermie who will work with you, personally I know I will be needing a new one if I flare again.  I got this really bad in Jan and finally in Aug, it really  calmed down, but I still itch and start getting little bumps and I did start with hypothyroidism and began synthyroid for it and it was pointed out to me that possibly that may have been one of the triggers in my case as I tested positive for thyroid antibodies.  Good Luck Pat,  I hope you find some relief soon.   
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 30, 2008, 01:38:55 AM
Welcome Pat, Glad you found this site,
   No easy answers though, it itches! I found relief with a 30 day treatment of predisone 60 mg for 5 days, then 50, 40, 30 on down - each for five days. Started feeling relief from the intolerable itch by the third week. Once I stopped it slowly came back, but not with even close the intensity. I itch, but I can function. I still get new sores/bumps, but only a few per week - whereas, I was getting them by the tens plus daily. I finally get to see a derm that has heard of Grover's October 23 at the U of M. I'm hoping he will hear and treat me as jd1 suggests. No creams helped more than minutely. I was able to sleep some in June and July by wetting a towel or two and laying them on the itchiest skin or between my legs. My eyes and ears are giving me a hassle too - which seems to be atypical. Maybe my eyes are dry or allergy bothered, but my ears have the same bumps in them as my back. They feel the same, occasionally crust over, and my mom says they are the same. I use antibiotic ointment, sweet oil or vaseline in them. I also frequently cover my face with a thin coat of vaseline - straight petroleum jelly. I use steriod drops in my eyes or I would dig them out. I will let you know if U of M has answers we are not yet aware of.  I found a new soft ended plastic brush and used that on my legs and arms for hours at a time! and a back scratcher for my back for the worst of the itch. Fortunately, I rarely use the brush any more and only need the back scratcher a few times a day for a few moments. I find tighter or looser shirts work best - inbetween ones drive me crazy. Really humid air can bug me and so can some cool breezes if I'm already pretty itchy or sweaty. So sorry to hear you are also struggling - not something I would wish on anyone! Let us know what works for you. Elaine
Title: Scalp: Grover's disease
Post by: grantsoo on Tuesday September 30, 2008, 11:29:23 AM
My Grover's covers my chest, back and goes up into the neck and scalp.
The biopsies that confirmed Grover's were done on my back, however all of the lesions look the same.
I am very confident that the lesions on my scalp are Grover's.

I have a steroid lotion that will work on the scalp, but I don't use it anymore because I realize that it could transfer onto my pillow and then into my eyes at night - very bad news!!

Grant
Title: Grover's disease and chelation
Post by: grantsoo on Tuesday September 30, 2008, 11:40:12 AM
When it comes to various medical treatments, both traditional and otherwise, I have the highest respect for the "University of California, Berkeley Wellness Letter."
In a neutral manner it examines all claims and then gives an opinion based on the facts.  It also contains a wealth of other health tips.

I bring this up because the October 2008 issue has an article on chelation therapy if anyone is interested.  It looks at it from claims related to heart disease in particular but does talk about heavy metal poisoning.

Their website just offers brief synopsis of their articles.
http://www.wellnessletter.com/

Grant
Title: Grover's disease - when all else fails
Post by: grantsoo on Tuesday September 30, 2008, 11:51:26 AM
It is nice to see so much activity on the Grover's forum, although it is regrettable that so many of us suffer from this disease.  I did notice that one reference site says that the name "transient acantholytic dermatosis (Grover’s disease)" in some cases is now called "persistent acantholytic dermatosis (Grover’s disease).  I think many of us agree that persistent is a much better description than transient.

With so much activity on the forum, some simple things may be lost that I have learned and that I would like to share with those who are new.
1. Steroid creams work for me, but I rarely use them - only when the itch simply becomes unbearable otherwise.  I am concerned about side effects from the use of the creams/lotions.
2. My back scratchers bought from a "Dollar" store for $1.00 each are my best friends.  When all else fails, I can at least get momentary relief.

Grant
Title: Re: Grover's disease
Post by: blizzard8121 on Tuesday September 30, 2008, 01:46:16 PM
Just subscribed, Thank you Grant, Elaine
Title: Re: Grover