Grover's disease

[Geraldine]

Hi Chazes and All,
Just a note to remind old and tell new how BAD Grover's can be...with no end in sight.
Even tho Grovers is not terminal...It is a painful, chronic "skin condition" that has no rhyme nor reason. Sometimes is blisters, sometimes a rash, sometimes welts and lumps under the skin...often all three...mostly in the torso area. Sometimes "hot spots" showing up on the arms and legs and even tops of hands. It is excruciating when it isn't just irritating. I never go more than an hour or two away from home. Also, wearing even loose clothing around my waist and stomach area is almost intolerable. 85% of those who get it (and it is rather rare...took over two years and 5 doctors for me to get a diagnosis) get over it in 6 months to 2 years as unpredictably and mysteriously as it started. The motivation to do research and find a cure is moot. Not enough $$ to be made. Not enough of us with "persistent" form.
I thot I was crazy for over 2 years! WHAT is WRONG with me? Am I crazy?" Lucky for me I have a young primary care doc who knew I wasn't, and kept referring me until we got a diagnosis...but no real answers.
Geraldine
   

[Keith Johnson]

G'day everyone, been awhile. Well, it didn't take long for my Grovers to rear it's ugly head again...Not as bad as the summer months but annoying none the less. Took Sarri's advice and been cranking up on the Vit A, I think for me it has helped a little. Wonder if there are any study's done for stress and govers? Seems like mine is worse when I'm stressing about my business or just life in general.

Cheers,

Keith

[Geraldine]

Sorry, Keith!
Geraldine

[Seattlejeff]

Hi Chazes and All,
Just a note to remind old and tell new how BAD Grover's can be...with no end in sight.
Even tho Grovers is not terminal...It is a painful, chronic "skin condition" that has no rhyme nor reason. Sometimes is blisters, sometimes a rash, sometimes welts and lumps under the skin...often all three...mostly in the torso area. Sometimes "hot spots" showing up on the arms and legs and even tops of hands. It is excruciating when it isn't just irritating. I never go more than an hour or two away from home. Also, wearing even loose clothing around my waist and stomach area is almost intolerable. 85% of those who get it (and it is rather rare...took over two years and 5 doctors for me to get a diagnosis) get over it in 6 months to 2 years as unpredictably and mysteriously as it started. The motivation to do research and find a cure is moot. Not enough $$ to be made. Not enough of us with "persistent" form.
I thot I was crazy for over 2 years! WHAT is WRONG with me? Am I crazy?" Lucky for me I have a young primary care doc who knew I wasn't, and kept referring me until we got a diagnosis...but no real answers.
Geraldine
   

Hi Geraldine:

I've had Grover's for over a year, and it seems to be clearing up.....much better than when it started.  But I am riddled with many other skin problems due to having very sensitive skin, too much sun, and having the beginning stages of osteo-arthritis, like Elisa.

My heart goes out to you because you seem to be really suffering with Grover's, not that we all haven't, but your case seems pretty severe.  Just want you to know you have all my support and prayers.  And you are right, why in the heck aren't they doing research for a cure for this?  Seems to me it would be something dermatologist researchers would be looking into.  Why is it so unimportant to the medical profession.  I don't get it!

At any rate, I have read your posts and feel your pain.  Hang in there, and I'm glad we are here for you.

All my best,

Jeff

[Elisa]

Hi Geraldine,

I can't agree more with Jeff.  I also "feel" for you.

Like Jeff, my serious Grovers lasted a year and now I have only a slight reminder that it is still present, meaning no "decollete" but I can live with that!

The osteo arthritis/rhumatism/whatever it is, has become a nasty problem nevertheless and like all of us, I wish someone out there would get on with Grovers research because it is quite mad that we are all floundering and suffering (but at least we have this forum)!

Take care,
Elisa

[Geraldine]

I thank all of you well wishers for your thoughts! Yes, this forum has been a life-saver. Helps to realize one is not totally crazy!
Geraldine

[TomA]

Geraldine,
I'm wondering if the hair dryer has done any good for you. You haven't mentioned it. I was hoping and praying for you that it would give you some relief, since your case is so bad. For me drying off after a shower and when I have stinging spots, the drying does take the pain away for a while. It doesn't make the Grovers go away, just the pain and discomfort.

I've tried Vit A for over a year and haven't noticed any particular results. I've stopped for a while now to see if it gets any worse and it hasn't. Man, we keep looking for that magic bullet of a cure, and it just doesn't come. Bummer.

I have some arthritis in my left thumb. My dad had arthritis as well. I've never really considered a Grovers connection, although both are autoimmune diseases. I was also diagnosed in December with ulcertive colitis, another autoimmune disease. I read an article recently that stated that Omega3 supplements help autoimmune disease.

Good to hear from all of you.

TomA

[Geraldine]

Hi TomA and All,
The hair dryer has helped me keep dry, and gives a little very temporary relief. The really hot, wet packs give the best and longest lasting relief. when combined with Sarna and Gold bond powder.
Does anyone have a clue if there might be anything positive that result from applying Retin-A or generic there of??!! Somehow I just envision having acid burned skin along with Grovers rash, hot spot AND burning sub-dermal welts and lumps! My local derm has prescribed the Retin-A with the off hand comment "need to do something topical."
Anyone??
Geraldine

[shana01]

Hi Everyone,

I've had Grover's for over 3 years now and it's never got any better. Cold shower's and staying cool helps the most. When I first got it they did a culture and it came back as staph. My German Shep. has a really bad drug resitant staph infection right now and the vet told me to get tested. Even though my dermatologist didn't want to do another culture, my husband insisted and I just got the results on-line.  

It says Rare PMNs, few gram positive Cocci
Light mixed flora without a predominant or clearly pathogenic organism, most comonly seen with skin/mucosal contamination.  

Also, a new dermatologist just told me the steroid creams I'm using are thinning my skin and should only be used for 3 months, max!!

[Dondi]

When I was diagnosed the first time, the sermie wanted to try me on a round of oral steroids right away.  I chose not to do to being diabetic and overall before, I knew anything else was wrong with me I just didn't feel right.  I don't regret  not doing it either.  But the dermie actually said to me, "you know what they called this before they put a name to it, itchy red bump syndrome, its no big deal and it runs its course"  I thought if I could, I'd smack you.  What a stupid thing to say to someone who is losing there mind from itching and burning and disgusting bumps and scabs from scratching.   I guess they feel that physically it doesn't kill you, without realizing  how mentally fatigueing it becomes.  How desperate you can feel, for relief when it is at its worst. 
I do remember reading a definition for some of the words used in the biopsy report as a problem with the cellular basement of the derma layers.  In other words the skin is nt seperating properly and moisturize is sort of trapped between the layers.  I do hope I am relaying this correctly as it has been a while.  I found cold compresses or shower did help as did cold water and vinegar gave temporary reliefs without using a steroid cream.  I did use them for a while and then off and on and it absolutely affected my skin.  I have mentioned in the past I believe there is so kind of auto immune component here and still do.  It can be hard to pin down as it probably is a bunch of thigs that finally results in Grovers.  And doctors usually have not heard of it and almost find it humurous when it gets brought up.  Itchy red bump disease indeed, I do think more would be done about it if a few doctors came down with the itchy red bump disease.  There is light at the end of the tunnel for most, although I will say my skin is more hyper senstive then it had been.  I do wish you all the best.  --Dondi

[Sarri]

Hey Everyone!

I hope all of you are having a "good" Grover's day

I wanted to respond to Geraldine about Retin-a. Geraldine, I know I've relayed my horrible experience with this topical; however, I actually discussed this form of treatment with my derm, again, just this morning. In conjunction with my oral vitamin A (60,000 IUs 2x daily - 3 weeks on...1 week off...repeat for another 3 months), I am going to do the following: 1 to 3 times a week (depending on how my skin reacts), as soon as I shower, apply an "agreeable" lotion to rash, then, apply a very thin coat of retin-a. And, then, use lotion as needed...and as tolerated. I plan on starting this next week sometime. So, I'll keep you posted on my progress, or lack thereof. My derm has used this for several of his Grover's patience, and he says it does help with the "bumpy" / sandpaper-factor. It's just a matter of "getting it right" for the individual - 'cause, let's face it....we're all different. I do believe that the oral vitamin A is keeping my rash "in check", but is def not a cure....yet. All my BEST everyone!

~ Oh, and I've been using the hairdryer to help dry the excess moisture off of my skin....once out of the shower, and, I think that does help, but I am not into the "zapping" thing - pain isn't something I welcome

[Geraldine]

Hi Sarri and All,
I had an almost immediate and adverse reaction to mega oral Vit A. Facial skin turned reddish and swelling under and around eyes...looked like was hiding water balloons under both eyes. And this was almost immediate. Scaled back dosage to 25,000 twice a day. Still the swelling and extreme gastrointestinal upset. Quickly went off all "A" except what is in multi Vit. Evidently anything with "A" may certainly be a BIG problem for me. And I think Retin A and any generic thereof is much the same. Just taking in through skin instead of through intestinal system...but skin burns when acid id applied. SOOOO Sarri, let me know how it goes!
Geraldine