Grover's disease

[Elisa]

Dear Reed,

What a shame that your dermatologist decided not to biopsy your daughter's spots.  If only for peace of mind to know what she has!

Sorry to hear that your own Grover's has been playing up.

We are all more or less in the same boat - and it's not fun.

Take care,
Elisa

[Seattlejeff]

Hi Seattle Jeff,

Yes indeed sweating certainly envigorates Grovers.  We've all known that if you read the posts on this site.
I'm back to square one, re-treating my Grovers's as I did the first time round.  Patience!  It's not easy.

All the best,
Elisa

P.S.  Mr Reed, I'm waiting to hear the results of your daughter's biopsy.  I bet it's not Grovers.
[/quote

Thanks for your response Elisa.   Appreciate it!!!!!  Hope all is well with you!

Seattle Jeff

[Dondi]

Hi SeattleJeff ---   Sorry to hear you are experiencing flareups from the heat.  Its tough to take when you are getting better and then  flare up.  I do think that Grovers is an end result of whatever  it is we got to start with.  Which is what one of the memebrs of another board kept trying to explain to me way back on the blogs.  They just said it in a far more complicated way then my brain could take in at the time.  There is no direct cure, so frustrating to say the least.  Anyway, have you just tried taking a cool shower  or bath.  Sometimes  just something cold against my skin could take  the itch down. 

Its been months now and I feel pretty good, I have  a moment here and there when I itch a bit, I have to moisturize faithfully, Thryoid problems are still an issue,  I was a little sick a few months ago and started itching a bit and  sure enough my thyroid levels were off.  I have Hashimotos thyroiditis, it is an auto immune problem and I  tend to get hives when things started getting out of control or flare up.  5th increase  of meds and I am feeling better and so is my skin.  The horrible reddish purple marks have faded some have actually turned white like scars do and look like scars.  Last year I was miserable! I didn't even want to leave the house. 
SoCalMOM-  Hello!  Hope you are feeling as well.  Hope  you all find comfort and get better!  Take Care !!  ---Donna  ( DONDi)

[Elisa]

Hi Everyone,

I just read Donna's last post and something she wrote worries me: "I do think that Grovers is an end result of whatever  it is we got to start with".....you could well be right Donna, except I didn't think I had anything at all wrong with me until I got Grover's!  The operation I had was for an asymptomatic benign tumour.

However, yesterday - and get this - I was treated for a painful finger....I know that this sounds stupid but shortly after the discovery of my Grover's (not yet one year), my fingers got slightly fat.  Then one finger in particular began to really hurt.  At the time, I spoke to a friend GP who said it was no doubt the onset of arthritis and I thought nothing more of it.  The pain became so annoying that I went to the Paris Hand Clinic who informed me that joint problems are linked to Psoriasis.  Now I do not have Psoriasis but I'm wondering if joint problems are not then also linked to Grover's?  Has anyone heard of this or experienced anything like it?

Take care all,
Elisa

[Dondi]

Hi Elissa-  I also have joint pains, some of it is due to the fact that I have osteoarthritis, but some of my pain is due to the auto immune problems. Doctors really can vary on their thoughts have much difficulties thryroid issues can cause.  I have noticed a difference in when I was first diagnosed how much pain I was in and how much it initially improved and then worsened again  later.  I didn't realize my joints could swell from steo arthritis but found out recently from some recent arthritis activity that yes indeed  your joints can swell form it.  I thought I had was experiencing bloat.  LOL But  water pills didn't help.    Anyway this isn't quite what you meant.  I have heard of arthritis connected to psoriasis, it is  auto immune in nature.  Some people  go for  a type chemo to handle it, or light therapy. Right from  the beginning,  I felt that my grovers was connected to me having been ill prior and having other health issues, all in a short time.  I wondered if  some how my immune system was jut saying enough for you right now.  Not that I can say it was anything that horrendous but just enough for me at that point in my life.  We all have our limits physically.
  It happened that my family also got hit with a scabies out break that just caused more confusion and wondering for me.  But I had the grovers a few months before and I was the only one who was diagnosed with it , and we all had been at the dermie office, as a matter of fact 2 different dermies.  My husband had biopsie after biopsie (4), and although there was some wording similar( one that that said couldn't be ruled out yet) he was never diagnosed with grovers.  My rash never looked exactly like his, and my children'  didn't have anything that looked like me.  After the treatment I still had problems, and the dermie  told me your case is different then the rest of the family. In the end though, I stick with what I said,it is a response to whatever is going on in the body.  We just have to figure out what it is.  Oh and Elissa, I don't know the circumstances of your tumour, but I also had a benign tumour  called a dermal duct tumour removed from my elbow, probably 2-3 yrs before.  The doctor who did it said its benign and he had heard of them but never saw one before.  I don't know if there could be any connection.   ---Donna

[Elisa]

Hi Donna,

Thank you for sharing all that information.  It is interesting to know that you also have joint pains.  But which did you get first, Osteoarthritis or Grover's?

Up until last year and my benign tumour (in the brain) - which is why I had hours and hours of anesthesia and which triggered Grover's, I had never been ill in my life.  No arthritis, nothing. 

When my fingers started getting fat I didn't really think that it could be symptomatic of future joint problems.  The treatment I got yesterday at the Hand Clinic has actually helped a bit and I return there in three weeks for another "infiltration" of an oily substance (not Corticoids).

This is getting really scary: anesthesia secondary effects = Grover's  / Grover's secondary effects (maybe) = joint pains.....

Going back to your health problems, when did your Grover's show up?  Before your benign tumour?  After it?  Did you get a big dose of anesthesia toxins too?
All best,
Elisa

[Sarri]

Hello again

Well, Elisa, I am intrigued by your benign tumor idea - I too have one! It's located on my pituitary gland. So, maybe, you're onto something with that. (Honestly, I think bc pills may have contributed to this tumor, but docs will NEVER agree to THAT idea). I've also "gone under" for having my tonsils and wisdom teeth out, so, there maybe something to anesthesia exposure? Actually, the first time I remember having an outbreak was the summer AFTER having my wisdom teeth out in college....hmmmmmm.

[Dondi]

Elissa-  Grovers came after the osteoarthritis.  But I had increased joint pain before I was diagnosed with Hashimotos and  then some improvement in joint pain after a few weeks on thryoid replacement.  I think for people who also have antibodies it may improve there antibody situation and I think that was the case for me.  The tumour I had was no big deal  it was just thought to be a cyst originally and took the doctor back cause he did not think thats what it was and he never saw that kind.   He numbed the area out, it was a 4 inch incsion.  It sounds like you went through a major thing, and I would imagine it was very stressful.   I believe that stress  does strange things to our immune systems.  Sometimes we are not even thinking we are stressed because we are so used to being that way.  We all have had Grovers for different reasons.   Antibodies, mercury overload, sun damage,  etc. 

Sarri -  I am curious,  you mentioned a benign pituitary tumour.  Are you going to have it removed?  Is it causing any hormonal changes?  Years ago I knew 2 different young woman who had this situation, which I thought was weird because I thought it was not a common thing.  This was back in the 70's they had the tumours removed orally, by a surgeon in Canada.  Wishing you good health---Donna

[Sarri]

Dondi - My pituitary tumor is a "micro-adenoma", so, very small. And, I keep it "in-check" by taking the drug bromocriptine once daily, and I get my levels checked every couple of months - usually, when I do the blood work for my thyroid (hypo) check.

I did have a friend who had a large benign pituitary tumor removed last year, via her nasal passage - it was a pretty intense procedure, from what I heard. So, if I can avoid that with medication for the rest of my life, I will.

Before going on the bromocriptine, I had MAJOR hormone problems (emotional swings, breast discharge), but once the diagnosis was made (via MRI) and treatment was started, I really didn't notice anything else. I strongly believe being on birth control contributed this - my friend was on the same pill as me, for about the same amount of time before developing her tumor.

Anyways, my Grover's is trying to clear-up, my spots are mostly clear now -and not red. But, the itch factor is still there - ugh! I am still using Suave advanced therapy lotion, natralia, and baby powder in combination with taking the vitamin A for another month, so I am crossing my fingers. Plus, the cooler fall weather should, hopefully, arrive in Cinci in a couple of weeks!

Best Wishes....

[Seattlejeff]

Hi SeattleJeff ---   Sorry to hear you are experiencing flareups from the heat.  Its tough to take when you are getting better and then  flare up.  I do think that Grovers is an end result of whatever  it is we got to start with.  Which is what one of the memebrs of another board kept trying to explain to me way back on the blogs.  They just said it in a far more complicated way then my brain could take in at the time.  There is no direct cure, so frustrating to say the least.  Anyway, have you just tried taking a cool shower  or bath.  Sometimes  just something cold against my skin could take  the itch down. 

Its been months now and I feel pretty good, I have  a moment here and there when I itch a bit, I have to moisturize faithfully, Thryoid problems are still an issue,  I was a little sick a few months ago and started itching a bit and  sure enough my thyroid levels were off.  I have Hashimotos thyroiditis, it is an auto immune problem and I  tend to get hives when things started getting out of control or flare up.  5th increase  of meds and I am feeling better and so is my skin.  The horrible reddish purple marks have faded some have actually turned white like scars do and look like scars.  Last year I was miserable! I didn't even want to leave the house. 
SoCalMOM-  Hello!  Hope you are feeling as well.  Hope  you all find comfort and get better!  Take Care !!  ---Donna  ( DONDi)

Hello Dondi:

I haven't seen you on the forum for a while.  I think the last time I checked awhile ago your Grover's was clearing up.  It is interesting you have Hashimotos as that is what my derm and endo throught were causing another rash I had.  This one is located around my upper chest shoulders and neck area, looking very much like heat rash.  In January that was biopsied and came back folliculitus.  Then my back became flaring up with a different kind of rash which I requested my derm biopsy, and it came back Grovers.  It turned out I don't have Hashimotos but I do have some lesions on my thyroid which need to  be checked via blood work and ultra sound every six months.

At any rate, the weird thing about my Grover's is it doesn't really itch.  I guess I'm lucky in that regard.  I do use Sarna as a safe guard though.  My new dermatologist's husband has Grover's and she said the last time I saw her she thought mine was clearing up.  It has been about six months now.  But like I said, when I get stressed or sweat I notice my back flaring up. 

It's good to hear from you Dondi.  I'm glad you are doing better, and I always have appreciated your caring and compassion.

Big Hug,

Jeff 

[Seattlejeff]

Hi Everyone,

I just read Donna's last post and something she wrote worries me: "I do think that Grovers is an end result of whatever  it is we got to start with".....you could well be right Donna, except I didn't think I had anything at all wrong with me until I got Grover's!  The operation I had was for an asymptomatic benign tumour.

However, yesterday - and get this - I was treated for a painful finger....I know that this sounds stupid but shortly after the discovery of my Grover's (not yet one year), my fingers got slightly fat.  Then one finger in particular began to really hurt.  At the time, I spoke to a friend GP who said it was no doubt the onset of arthritis and I thought nothing more of it.  The pain became so annoying that I went to the Paris Hand Clinic who informed me that joint problems are linked to Psoriasis.  Now I do not have Psoriasis but I'm wondering if joint problems are not then also linked to Grover's?  Has anyone heard of this or experienced anything like it?

Take care all,
Elisa

Hello Elisa:

Just wanted to respond to this post.  Prior to my being diagnosed with Grover's I noticed swelling in my left thumb joint and the second finger, like a ganglion cyst or something.  I went to a hand surgeon on the advice of my derm, and he took an x-ray determining I had the beginning of osteo-arthritis.  Two months later, boom, I was diagnosed with Grover's.  Interesting correlation. 

Don't know if there is a connection, but thought I'd share it with you anyway.

All my best Elisa,

Jeff

[Elisa]

Hi Jeff,

Thank you for responding to my "fat fingers" post.  I'm sorry to learn that you have osteo-arthritis.  Others on this site have also got both osteo-arthritis and Grover's so maybe there is a link there.

I'm going to try the lengthy (and costly) treatment at the Hand Clinic, because even though I currently have only one finger that's particularly bothersome, the same finger on the other hand is beginning to play up and the dr said that all of my fingers are in bad shape.  My Grover's however remains subtle: still there as ugly as ever, but not spreading and not itching. 

How do you treat your osteo-arthritis?

Take care,
Elisa

[Itchy Rich]

I was first diagnosed with Grover’s Disease (GD) in 1992, at age 51.  The diagnosis was based on a biopsy following surgeries for a malignant melanoma on my back in March and April,1992.  I believe I had the “rash” for at least a year or two prior to that.  Even though the rash has been present ever since, it had never bothered me, except for a mild stinging on hot, sweaty days, until about December 2006 or early January 2007.  From that time until about June 2008, it was unbearably itchy.  The eruptions covered my abdomen, chest and back.   My scalp also started itching about the same time but that appeared to be more from Seborrheic Keratosis (SK), which I have a lot of, all over my body, as opposed to the GD.  Neutragena T-Gel shampoo really helped the scalp itch.

In June 2008, I began seeing Dr. Jack Resneck at UCSF in San Francisco.  He prescribed Neurontin and within a short time the itching was pretty much gone and remains so today.  I have had a few itchy moments (overnight) but nothing lasting more than a day or two.  The rash continues to be present, as always, but it is not as red or “sore” looking.

Prior to the Neurontin, I had been using mometasone furoate (generic Elocon) since about March 2007, which provided some temporary relief from the itching, if used twice a day, but it did nothing else.  The periods of relief shrank to 1 or 2 hours so I began using it less in August 2007 and started using over the counter products.  Starting again in March 2008, I began using it at bed time and it seemed to help get me through the night. The dermatologist I was seeing at that time did not believe treatments with Accutane or Calcipotriol ever do any good and often have undesirable side effects.  I did try Dovenex but it didn’t help at all.

The over the counter products used are as follows:
·   Sarna (original and sensitive – seems to provide 2 to 3 hours relief)
·   Cetaphyl (provided some relief the first day or two then seemed to aggravate itch)
·   Eucerin Calming Lotion (short relief)
·   Eucerin Original (medium relief at times)
·   Eucerin Calming Itch Relief (the best overall at providing relief )
·   Vitamin E oil (used for several months with some success in the summer of 2007; it eventually seemed less effective and was discontinued)
·   Band Aid Anti-Itch Gel (odorous but works well when itch gets out of control – don’t use very often)
·   I did take NAC (N-Acetyl Cystein) for several months prior to taking the Neurontin – discontinuing it did not cause the itch to come back



My prior dermatologist prescribed medications, WHICH DID NOT WORK, including the following:
·   Silennium sulfide (topical – nothing good or bad)
·   Tazorac  (made it worse)
·   Dovonex (made it worse)

I think my prior dermatologist gave up on trying to treat me.  He excised a basal cell carcinoma and after the stitches were removed he said he would see me again in a year for my annual melanoma check up, unless my itching became really serious.

My medical/environmental history is as follows:

·   I remember several blistering sun burns before age 12
·   I had fairly serious acne from age 13 until my early 20’s
·   The summer I was 17, I spent a lot of the time at the beach and got my only real tan, following burns
·   I believe I started getting SK in my 30’s and have large SK’s on my chest, back and to some extent on my scalp
·   The malignant melanoma that was removed at age 51 had been on my back, at least in the form of a SK, for at least 10 to 12 years
·   I was diagnosed with type 2 Diabetes at age 56
·   I was diagnosed with Prostate Cancer at age 63 and was treated with a seed implant
·   Geographically, I lived in California’s San Joaquin Valley (hot, arid) until age 4, on the Monterey Peninsula (coastal) from 4 to 13, in Santa Clara Valley (hot, arid) from 13 to 22, in the Los Angeles area (hot, arid) from 22 to 61, in the Salinas Valley (coastal) from 61 to 66, Diablo Valley area (hot, arid) from 67 to 68 and I now live in the Vallejo area (less hot, almost coastal) east of San Francisco

I probably had numerous amalgam fillings prior to age 15 but no new fillings between age 15 and age 47.  Maybe I had a couple new fillings at age 47 and again at age 54.  I also had one or two in March through May, 2007, which was well after the itching began.  The dentist doesn’t believe the form of the mercury used in the fillings could get “loose” in your body and cause any kind of problem.  I guess you would expect them to say something like that. 

To the best of my recollection, the events preceding the onset of the itching were as follows:
·   I retired on 11/30/06, following two years of long, stressful hours (50 to 60 hours per week)
·   I began preparing to move, spending a lot of time in a dusty garage
·   In December, at the recommendation of my Dermatologist, I used Hibiclens to help get rid of a persistent fungus (jock itch) that had not completely cleared up using other OTC ointments
·   I also used the Hibiclens on my GD, which was NOT itching at that time, to see if it might clear it up (I wondered if it caused the itch)
·   I am pretty certain the itching began in January, prior to the time I moved to the dryer climate in early February
·   Since February 2007, I have only taken luke warm showers and, at times, have not used any soap on the affected areas; soap or no soap doesn’t seem to make any difference
·   The itching seemed to improve slightly around April 2008


I have been following the Skincell forum off and on for the last couple of years.  I don’t know if Neurontin is actually responsible for stopping the itch or if something else changed.  I’m hoping my experience might help others suffering from the the agonizing itch.

[jd1]

Hi Rich,

I am sorry you have been suffering with this disease for so long.  I had to go back to page 1 to remind myself how long I had it....and you've had it 3 years longer.  What an ordeal!  I think that some of the people who have posted over the years had the transient form of the disease.  It's terrible having the persistent form, isn't it?

If you've followed skincell for the last couple of years, then you might already know of the success that some of us have had with the treatment that addresses mercury toxicity.  Our world is polluted with mercury far beyond just our teeth.  And yes, I would expect your dentist to say that the fillings couldn't cause a problem.  There is a lot of information out there saying otherwise.  Have you considered giving Dr Dantzig's treatment a try?  You have tried so much already, but what would it hurt?

[Sarri]

Hello Everyone!!!

I hope all of you are having a GREAT Grover's Week (it totally sucks that I even have to say that).

Anyways, I was just wondering, do any of you have / had scars from your Grovers lesions? If so, do they go away??? Or, is there something gentle I can use / do to help them improve??? I have just a small area on my neck that seems to be healing, but is still pretty red for some reason. Thoughts??? Thanks everyone, and I enjoy hearing from all of you - helps to keep me "sane", knowing I am not alone in this fight for "normal skin equality"!!!

Sarri

[Elisa]

Hi Sarri and Everyone,

My Grover's is status quo, still red spots right in the middle of my chest....they seem to be there to stay!
At least they don't itch.

My big hang up right now is my fingers.....I'm having the second injection next week into my painful finger and the same finger on the other hand which looks like it's going to end up nasty as well.  If this is a Grover's side effect (which it would seem) then it's another pain in the.......

Hope you are all doing well inspite of the spots!
Take care,
Elisa

[TomA]

Haven't posted in a while, but I'd like to reflect on several observations in recent posts. Elisa, the connection of your swollen finger with psoriasis is interesting. Both psoriasis and Grovers are, of course, skin conditions, of which we do not know the cause. But it is instructive that two of the three healing treatments posted, Lamisil (So Cal Mom) and Soriatane (me) are treatments for psoriasis. Perhaps there is a real connection there.

We've also been looking at previous conditions for insight. Being an autoimmune disease, there seems to be some connection with when we may have been immunocompromised. I was in the hospital with diverticulitis when the rash showed up. I first thought I'd had a spider in my bed. It was terribly painful and spread throughout my body. I couldn't get anyone to take it seriously, nurses or my doctor. WebMD also suggests previous skin damage. I experienced serious burning and blisters as a child one July 4th holiday. In recent years I've had two skin cancers removed, as well as a couple of non-cancerous spots removed.

Elisa, you mention nearing your one year anniversary for Grovers. I hope this means it will start to clear up for you. As, I'm sure you are aware, Grovers official name is "Transient Acantholytic Dermatosis." Supposedly it is transient because most people are supposed to clear up in 6 months to a year. It is only the most lucky of us who have it for years with seemingly no hope of a cure.

TomA

[Keith Johnson]

"Well look who decided to join the party"?...Hi all new Grover's guy here in Kentucky. Guess I'm just here to share my issues and hope to learn from you all. I was just informed Tuesday and my derm tried the blue light on me...Later that nite I looked like the elephant man, welps all over my chest, back and neck, but the itching was gone..anyway the last few days have been better, the welps went down and my skin is drying up. I'm not sure if this will cure it, but it's a great temporary relief. I'm starting to think my diet of sushi(every friday) and lots of salmon could have caused this. I have never had any skin problems in my 40 yrs on this rock.       

[Seattlejeff]

Hi Jeff,

Thank you for responding to my "fat fingers" post.  I'm sorry to learn that you have osteo-arthritis.  Others on this site have also got both osteo-arthritis and Grover's so maybe there is a link there.

I'm going to try the lengthy (and costly) treatment at the Hand Clinic, because even though I currently have only one finger that's particularly bothersome, the same finger on the other hand is beginning to play up and the dr said that all of my fingers are in bad shape.  My Grover's however remains subtle: still there as ugly as ever, but not spreading and not itching. 

How do you treat your osteo-arthritis?




Take care,
Elisa

Hi Elisa:

Sorry it has taken awhile to get back to you.  I just can't seem to get ahead of health problems.  The latest a terrible sinus infection.  

To your question about treating osteo-arthritis, I don't really know.  My situation started with a swollen left thumb and index finger at the top joint.  My derm said they were ganglion cysts.  He suggested going to a hand surgeon which I did.  He took an x-ray and determined I had what is the beginning of osteo-arthritis.  He said there would be no treatment at this time, except to remove the cysts if I so elect.  Then to follow my case.  Oddly enough, a month later I developed Grover's!  Seems like a weird coincidence.

Sounds like you are in a bit worse shape than I.  I'm surprised your hand doctor didn't give you treatment options.

My  arthritis does not impede movement of my fingers yet.  However I believe there is medication, and cortisone shots that can be given to help in severe cases.  Your neurologist or hand doctor should know.
I hope it is not too bad. 

I'm still dealing with Grover's but it seems to clearing some.  It is restricted to my back.  I will be going one year in January.  So maybe that will be the magic marker.  Fortunately it doesn't itch real bad, and looks more like I have alot of freckles from the sun, and peeled here and there.  It's no fun anyway.

Let me know if you hear anything more about treating the osteo-arthritis.  And how your Grover's is doing.  Sounds like your case of Grover's is about like mine.  Not spreading or itching, but looks pretty bad none the same.   

Wishing you all the best

Jeff

[Elisa]

Hi Jeff,

Good to hea