Grover's disease

[Jimbo]

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

[kneecapper]

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

[BobC]

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

[jd1]

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.

[kneecapper]

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

[kit]

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.

[Gobe]

 

Welcome to Skincell Kit!

 

[Jimbo]

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.

[kneecapper]

  Kit

welcome to Skincell.

Maggie

[kneecapper]

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  
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   ?

Maggie

[Jimbo]

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

[kneecapper]

  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

[DiGray]

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

[Gobe]

 

Welcome to Skincell DiGray!

 

[BobC]

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

[Mark S.]

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!

[Gobe]

 

Welcome to Skincell Mark S

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

 

[DiGray]

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

[Jimbo]

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

[Mark S.]

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...?