Author Topic: Grover's disease  (Read 974404 times)

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Offline JD

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Grover's disease
« 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
« Last Edit: Thursday January 01, 1970, 12:00:00 AM by 1047168000 »

peterb

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Re: Grover's disease
« Reply #1 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.

« Last Edit: Thursday January 01, 1970, 12:00:01 AM by -1 »

Offline Nick

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Re: Grover's disease
« Reply #2 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 :)



« Last Edit: Thursday January 01, 1970, 12:00:00 AM by 1047168000 »

Offline JD

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Re: Grover's disease
« Reply #3 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
« Last Edit: Thursday January 01, 1970, 12:00:00 AM by 1047168000 »

Offline Val

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Re: Grover's disease
« Reply #4 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:
« Last Edit: Thursday January 01, 1970, 12:00:00 AM by 1047168000 »

Offline Nick

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Re: Grover's disease
« Reply #5 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  :(
« Last Edit: Thursday January 01, 1970, 12:00:00 AM by 1047168000 »

Offline Kip

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Re:Grover's disease
« Reply #6 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?

Offline Val

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Re:Grover's disease
« Reply #7 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:

Offline jd1

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Re:Grover's disease
« Reply #8 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

Offline Kip

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Re:Grover's disease
« Reply #9 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

Offline Jimbo

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Re:Grover's disease
« Reply #10 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

Offline jd1

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Re:Grover's disease
« Reply #11 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.

Offline kneecapper

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Re:Grover's disease
« Reply #12 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
Laughter is the best medicine

Offline BobC

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Re:Grover's disease
« Reply #13 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
BobC

Offline kneecapper

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Re:Grover's disease
« Reply #14 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
Laughter is the best medicine

Offline Kip

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Re:Grover's disease
« Reply #15 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

Offline Jimbo

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Common Condition
« Reply #16 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

Offline kneecapper

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Re:Grover's disease
« Reply #17 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
Laughter is the best medicine

Offline Nick

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Re:Grover's disease
« Reply #18 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:

Offline jd1

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Re:Grover's disease
« Reply #19 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.