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

Welcome to the GD world. Do you have medications? Also, Sarna over the counter may reduce the itching.

I have been given two steroid creams and doxepin as an oral medication. Nothing seems to help.

I’m actually trying tetracycline right now. It is starting to clear a little. I don’t really like it though because the pills make me a little dizzy. I’m sorry you are going through this.

Sounds familiar except I’ve been told for years that my itchy bumps were just a contact dermatitis. Wasn’t until I spent a spring in hot humid Hawaii then went to the hot dry SW for 3 weeks of hiking and finally landed in Colorado where my red bumps were profusely spread over my trunk and spreading to arms and legs. I was miserable! Once home I saw my dermatologist and she found a “newer” lesion that clearly showed Grover’s and not just inflamed cells. It’s been 9 months since the start of this extreme flare; after 3 months of phototherapy 2-3x/week and Triamcinolone dabbed on hot spots, along with Luke warm soda water soaks 2x/wk, no vigorous exercise and cold packs to the itching burning areas in the evening, I’m seeing light at the end of the tunnel. For me, I had to stop use of all commercial lotions and use straight up coconut oil to moisturize 2x/day. Messy but it’s the only product that does not burn. I also undertook a 30 day elimination type eating plan (Whole 30) to reduce systemic inflammation. I truly felt better doing this; and have noticed increase in “flares” as I’ve reintroduced the foods I’d eliminated. Seems as I get to higher dosing in my UVB phototherapy I’m having more “flares.” Has anyone else experienced this?

I experience the same. For me I find tiny almost microscopic pink itchy bumps which eventually fully erupt. If I catch them early with Triamcinolone ointment they resolve. Sometimes the phototherapy makes them fully erupt. Can’t win.

I understand the need for bacterial control but Instead of an oral antibiotic which can kill your good bacteria that keeps yeast in check (over production of yeast increases inflammation in the body) have you tried a localized topical antibacterial which can be helpful if your pustules or papules have broken open? Clindamycin Phosphate or Metonidazol? Maybe use both to?

Just because we have GD doesn't mean we don't have other forms of eczema; I have 3 types.Most of us with eczema, an autoimmune disease either have or will develop another autoimmune disease and will also add to our list of types of eczema. You mentioned giving up commercial lotions (which are a toxic soup of chemicals, preservatives, alcohols, fragrance and even natural ingredients we can be allergic to). I strongly recommend getting the 5 Day Extended Patch Test. Do you know coconut, a natural ingredient is a major offender and included in the patch kits for testing for a reason. I would have never guessed on my own what allergens I had. Like you for years derms assumed my torso rashes were part of my Allergic Contact Dermatitis issues not bothering to dig deeper. Google this exact test.

I'm so glad I found your group I have had Grover's for over 7 months and have tried 12 different steroid creams and some made it worse and none have made it go away. Then dermatologist said to do UVB rays so I went to tanning booth I cover my face my bumps are mainly under my breasts. It helped a little. I was approved for a breast reduction to help with this but now my Plastic Surgeon is concerned about doing the procedure due to the rash is still there. I told her it is not a infectious or contagious. I can understand but she saw it when it was at its worse she said she wants to see it again in a week. I have been trying over the counter stuff but I appreciate the information on diet change here on the forum which I'm going to start doing. Does anyone know somebody that had Grovers and had a breast reduction done. I believe it would help my rash. Also the phy is afraid the scar would not heal with the rash there.

If the Grover's rash is infected I imagine it could be an issue for surgery, but GD itself is not contagious and yours may not be infected. I imagine your PS could biopsy for bacterial infection Steroids did nothing to help my GD and the first outbreak is normally the worst for most of us. My first major breakout lasted 1 year (normal for most of us) and subsequently I get about 6 months on and 6 months off, although after having it now for 3-4 years I am past due for my 6 month outbreak and I can feel the under-skin bumps beginning but I only have a few papuales that have broken. The area is barely itchy and not painful yet. I do believe my diet changes have helped, but then again as mentioned for many of us the early years with GD are the worst so I am hoping milder outbreaks are in my future.

I would think since GD or Transient Acantholytic Dermatitis,ACD, is transitory for most, simply let this outbreak run it's course and then have your surgery. You would be more comfortable healing and your PS would be more confident of the results. It would be a challenge for me to heal from surgery because the GD causes intense pain for me when laying on my back torso. You will be spending time healing and what, lay on your side all the time?

In the meantime let's brainstorm for some relief and try to do what you can to have this outbreak run it's course. Give up on steroids, they don't help most of us with GD and they cause all sorts of long term complications. True if they helped me, which they don't, I would still use them just to stop the itching and pain. Do not sweat- yes a controlled environment, keep your breast area dry and if at all possible give up your bra (never an underwire) or at least remove it when your are home. Buy yourself some "old lady" (I can say this as I am 70) Muumuu's made of only 100% cotton to put on at home for breast modesty, shop on line as many have blended materials in most stick and mortar retail shops.Find a brand that sells a soft high quality cotton or best of all sew up a few as there are many simple patterns. I have a double whammy as I also have Allergic Contact Dermatitis, ACD, and one of my allergy's is to blended material- poly/cotton, elastic- even latex free so regular bras are out of the question. Yet all regular bras contain elastic and blended material are tight and girlie you need to hang loose. Friction will trigger and prolong your GD outbreak. I also wear 100% cotton button up 2 pocket camp shirts of denim or 100% cotton and can forfeit a bra when I am in public, but I am small breasted. After your surgery perhaps you could go bra less this way to forestall a breakout. Cottonique has 100% cotton front tie bras and bra liners (the liner has a small band of elastic on the bottom I remove and run a cotton drawstring). Yet no support for large breasts and I can't recommend their bras for you at this time, yet I have large breasted blogging friends that don't have elastic allergies that buy their soft cotton bra liner to wear under their bra to prevent eczema rashes.

Meds- Only 2 that seem to stall my outbreak or keep it from running wild are: 1. Anti-bacterial to use when papuales have broken- Clindamycin Phosphate and 2. Vitamin D- Calcipotriene Cream, .005% (expensive PX) yet try Good RX on line for great discount, free coupons for all. I may try immune suppressant (not a steroid) Elidel, which worked great for another form of eczema I have for my next outbreak

Since I feel the little under skin bumps waiting to breakout the last month I put on the Calcipotriene about every 3 days after showering and I have had no progression.

So to sum it up, I say wait out the year. Getting a reduction now will only stress your body and even with smaller breasts you have GD for life and as mentioned do what you can to get over this outbreak.

My hubs is going on over a year. He wishes to have relief. Things seem to work, and then he has to stop them. Like, the high dose vitamin A was great, but could only go on 2 weeks. The high steroid cream works, but can only go on 2 weeks. He keeps getting secondary rashes, which we are putting zinc on, and he is taking zinc pills. A friend of my mom's is a famous doc and he suggested that this could be related to the adrenal gland and suggested drenamin. Anyone else try this?