So Confused

I finally was diagnosed with Grover's Disease about a month ago after going from doctor to doctor trying to discover what I had.  I was relieved at first because I finally knew what it was.  Then I became even more confused because nobody seems to know how to treat this.  I have used Clobetasol Propionate cream with some good results, but had to use it constantly, rather than twice a day as prescribed.  I would wake up at 3 in the morning feeling like my skin was on fire.  It was more than itching, it was like thousands of needles poking me at once.  My itching would travel.  Once I got one area under control, it would break out somewhere else.  Then I was prescribed oral steroids, Zema Pak.  It was a ten day regiment from hell.  First I got uncontrollable hiccups, then I got a constant salty taste in my mouth.  In addition I suffered from insomnia, loss of appetite, and weight loss.  It did clear up my rash but at too high a price.  i swore I would never take those again.  Then I took  Soriatane which completely dried out my skin, giving me dry patches.  I'm now using Zonalon which has 5% of doxepin hydrochloride.  That does take care of the itching, but again on a spot by spot basis.  At night I take Hydroxyzine to help me get some sleep.  In the meantime, friends have suggested all sorts of remedies.  I have started taking sulphur pills because my friend swears this helps with rashes and itching.  The jury is still out on this remedy.  I have an appointment to see a specialist on October 18 at UC, San Francisco.  I'm hoping I will finally get a definitive answer as to which is the best treatment to follow.  If anyone has any further suggestions, i would love to hear them.  
richg95340 richg95340
9 Responses Oct 6, 2010

Take copper supplement s.

Hi I read your story and identify with your frustration. I just created a website for those of us who suffer from Grovers Disease. I'm not selling anything. I AM trying to help reduce stress and help prevent others from going thru endless doctor visits and wasting money. I would value your opinion if you would take a few minutes to look at it and tell me if you think it would have helped you initially. I want it to grow to help others. So going forward any suggestions would help me help others. Especially since I'm doing research on blogging and if starting. Blog might also help. I've never blogged before so I won't jump in unless I can really help. Please read my personal story under Treatment, and Relief. You are not alone. Also as I read thru all these stories of frustration I see our Disease is not being treated with respect from the medical community. Too much antibiotics that kill everything and leave our immune systems wide open to attack. My recent bout was as a result of No-see-ems bites. Made me sick, stressed, and another breakout. As I move forward we need to improve our health. Not bombard our bodies with more meds

I had it too. Copper deficiency caused by thyroid meds. No more Grovers in years!!!!! Was miserable for about one year!

Try SULFAMETHOXAZOLE 1 twice a day,,,,every 12 hrs..

I have Grover for four years, no cure only control. I take the same medication as you but I use an sauve by the name of Biafin. Biafin was developed for burn victims but I use it for Grover. Biafin is a French poduct that you need a presc<x>ription. Good luck and live life with an open mind!

Try copper in a multivitamin. It works!!!

What did the doctor say?

Penaten creme worked for me the first try. Order the creme on line, only six plus dollars. I and my wife could tell the difference after useing for one day, there was a big improvement. Great for Baby diaper rash..Good Luck..

Try copper in a multivitamin!

I am inclined to believe that there is a relationship between my consumption of peanuts and the intensity of the incidence and size of Grover's spots, not to mention other unwelcome gastrointestinal, energy level and positive mental attitude changes. This is a result (I think) of stopping a decades long peanut consumption cold turkey for four months and subsequent reintroduction. Not a pleasant result, if it is cause and effect. Any corroboration would be helpful. If peanuts can affect me this way, what else should I be avoiding? Can other Grover's sufferers benefit from this?

Copper is the answer!!

I have being trying a herbal tablet taken daily called Graveton. It appears to give some relief. I am about to order my third three month supply so curious to hear if anyone else has success with this.<br />
<br />
It is hard to tell if it realIy works as I have just had another outbreak - as usual after sweating heavily .<br />
It is very frustrating how little any dermatologist know about a cure.<br />
<br />
I think the Graveton has helped but it may simply be because I cut back on running and thus less sweating.<br />
<br />
Anyone out there who has tried Graveton? Anyone with other idea? Vitamin D ?

The thing that works for me is molybdenum dietary supplement 250 mcg 1per day pill form keeps it under controll

Try copper in a multivitamin!

Most who suffer from Grovers Disease have a conspicuous rash and significant itch. The rash/itch can last for weeks or months, so dealing with it is imperative to allow you to live your life while the problem is diagnosed and helped.<br />
<br />
Here's a page that provides home remedies for this kind of itch