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Grover's Disease: What works to help find relief?

Skin Health | Last Active: 16 hours ago | Replies (1949)

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@gardeningjunkie

Tell us exactly what he has been prescribed, probably steroids which thin the skin and I didn't have great success with those. I also was given a powerful corticosteroid shot, Kenalog 40 which helped my Allergic Contact Dermatitis internal symptoms but did nothing for my Grovers. My first outbreak lasted a year, with is common, but now consider myself lucky as some have it last for years, one person said she had it for 6 years before she had remission. I have had 2 subsequent outbreaks which lasted for 6 months and then I get about 4 months off, yet each new outbreak is not as severe as the first. I couldn't even lean back while driving of lay back in a chair. Pressure and friction hurt.

Several products seemed to help some:

Prescriptions 1. Calcipotriene Cream, 0.005%, this is a topical vitamin developed to help with psoriasis and took special approval by dermatologist for my Humana pharmacy insurance to approve. I use this at the start of breakout and all during. No magic bullet, yet started using this with second breakout and it was not as severe as the first. So does it help or are subsequent breakouts less severe?
2. Clindamycin Phosphate USP, 1%, I am confused about this one as internet describes it as being an antibiotic yet my doctor told me it was an anti-inflammatory. I use this if the bumps break and it keeps them from getting infected and seems to help them scab over faster.

Non- prescription 3. Flanax Linimento- only thing I have found to relieve itching, it will help within 5 minutes and gives some relief for about 30 minutes. I apply just before bed and then lay on my sides which have never broken out and this can give me time to fall asleep. Purchase on Amazon, small 2 oz bottle will last for several months, only remove with a q tip then dab on skin and spread with a long handled spoon to rashed area. Do not touch with fingers or if rubbing in by hand wear a disposable vinyl glove. If you rub your eyes or mouth the ingredient, capsaicin (red hot chili pepper) will burn! Yes it does burn Grovers rash for a minutes, yet it's a relief from the itch, then the burn goes away. Buy on Amazon, not a px. I also have ACD another form of eczema and this topical is free of any of my ACD allergens.

I have 3-4 forms of eczema now, beginning after age 55, and this year developed a new one and was prescribed Elidel,it is not a steroid but Elidel, 1% is an immunosuppressant and it truly helped my symptoms for the Perioral form of eczema, all cleared up in a matter of weeks, so I'm thinking I may try for next GD breakout.

Except for the Clindamycin all the prescriptions are expensive. For one px I am better going to GoodRX and getting their coupon than using my insurance. Yet even with back and front torso rashed up they last a long time. I grow weary of asking my husband to apply, plus I hate him seeing the ugly rash, so I have a long handled spoon and then can spread just a tiny amount of topical to back area without his help.

Yes this form of eczema can cause you to go crazy, no relief and worse at night with elevated histamine levels. Lack of sleep is a real issue, a form of torture. With my subsequent breakouts my pain and itching level was less so was able to sleep. Also I learned not to move once on in bed, if you turn over the pain wakes you. Somehow I trained myself.

He must avoid sweating and heat, yet my last breakout started in Feb of this year and went away mid August. This makes no sense. Please understand if you go to hug him why he flinches- it hurts as much as it itches. Now I even enjoy a warm shower, as with a break out warm water hurt, I could only handle cold or cool and of course water pressure had to be very low as water pressure hurt. At least I didn't have this happen to me until age 67, for so many it begins earlier in life.

Very little research done about this form of eczema. It won't kill us, but it makes sufferers so miserable we may wish we are dead. During the day activity kept me sane, a woman's work is never done and when busy I could forget about it for a few minutes. A good movie in the evening or book while laying on my side, could distract me. Night's in bed are long with nothing to distract us. You both need to pray that this will be his first and last outbreak, yes in some cases they only have one breakout. The name Transient Acantholytic Dermatosis, TAD, aka, Grover's Disease, GD, means it comes and goes and could also leave forever. For me it will now be a way of life I am afraid.

You are a caring and loving wife and I know he will appreciate your search seeking help for him.

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Replies to "Tell us exactly what he has been prescribed, probably steroids which thin the skin and I..."

I greatly appreciate your response. he is currently prescribed mometasone (.1%) and aug. bethamethazone (.05%). It just seems to get worse daily (for many many months on end). We read this can go on for decades and I feel so badly for him. Thanks again I wrote down what you're taking and sent the doc. an email. 🙂