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

Posted by 43219876x @43219876x, Sep 23, 2016

I have been diagnosed with Grover's disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?

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@jtboston

Does anyone GD appear like this?

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Have never had it on legs or arms, just chest and back. You can also join the Facebook group and get some good advice from Bryan Lewis.

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I’m four months into my first 1st Grover’s attack and it’s been a doozy. Been reading all of your recommendations and thank you all for sharing. I’ve done the steroids, w no improvement, used many pills and creams recommended by my Derm w no improvement. At this point I feel my Grover’s is “trying” to leave. Rash is so much less, however I’m still getting bumps here and there (and everywhere)! In the last two weeks I’ve used only a daily Claritin, 2-3 times per day Cera Ve anti itch lotion, and. Cilantro smoothie (fresh and extract both) to help my Grover’s. Living in FL is tough. My Grover’s hates the heat. Hoping this will subside in the winter months. I do take melatonin to sleep (sometimes something stronger) as the itch kills me and not getting enough restful sleep makes my itching even worse. I honestly feel I have no control over Mr Grover, but I keep reminding myself that this a transient disease that could be gone tomorrow (and who knows why). And I just need to “manage” it as well as I can. It’s a horrid disease and quite exhausting I can’t imagine living like this for years as some of you have. But thank you for your ideas and recommendations as they do help. ❤️

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Does anyone have a definite diagnosis ? My pathology report only says suggestive of GD so I’m perplexed as to why my Dermatologist is hesitant to say “ yep you have it” keeps trying alternative solutions. I believe this is due to the first biopsy said possible psoriasis but I have learned that first Dermatologist was a hack so I am just floating around without a clear path on what to do.

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@jtboston

Does anyone have a definite diagnosis ? My pathology report only says suggestive of GD so I’m perplexed as to why my Dermatologist is hesitant to say “ yep you have it” keeps trying alternative solutions. I believe this is due to the first biopsy said possible psoriasis but I have learned that first Dermatologist was a hack so I am just floating around without a clear path on what to do.

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Read the blogs by gardeningjunkie on this site. She will give you a lot of good information.

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Dermatology finally agreed that yes this does appear to be Grover’s and wants to try Dupixent has anyone had success with this?

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@jtboston

Dermatology finally agreed that yes this does appear to be Grover’s and wants to try Dupixent has anyone had success with this?

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My dermatologist originally suggested dupixent when the topicals and zyrtec failed to control my GD. I declined dupixent after reading about possible side effects with the drug. I inquired about light therapy but my doctor said I was not a good candidate for it because my skin is very fair and my family has a history of skin cancer. After more misery, my doctor suggested Adbry as an off label treatment for GD. I did a little research as I had never heard of the drug. Fewer side effects reported than Dupixent. I asked mu daughter's dermatologist about Adbry as I hadn't heard of it. That doctor said drug companies don't advertise drugs that work the best because their effectiveness sells themselves.

So, I agreed to try Adbry and I am so glad I did. I had relief within a month. I take 2 injections every other week. I have been on it since Jan 2023 with no more GD flares.

My health insurance denied paying for the drug but my dermatologist applied for me to the drug companies bridge program that gives me 2 years of drugs free of charge. My insurance company finally approved Adbry for me on the 3rd appeal. When the bridge program runs out in Jan 25, my insurance will kick in for it.

Look into Adbry instead of Dupixent.

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@southerngirlatheart

My dermatologist originally suggested dupixent when the topicals and zyrtec failed to control my GD. I declined dupixent after reading about possible side effects with the drug. I inquired about light therapy but my doctor said I was not a good candidate for it because my skin is very fair and my family has a history of skin cancer. After more misery, my doctor suggested Adbry as an off label treatment for GD. I did a little research as I had never heard of the drug. Fewer side effects reported than Dupixent. I asked mu daughter's dermatologist about Adbry as I hadn't heard of it. That doctor said drug companies don't advertise drugs that work the best because their effectiveness sells themselves.

So, I agreed to try Adbry and I am so glad I did. I had relief within a month. I take 2 injections every other week. I have been on it since Jan 2023 with no more GD flares.

My health insurance denied paying for the drug but my dermatologist applied for me to the drug companies bridge program that gives me 2 years of drugs free of charge. My insurance company finally approved Adbry for me on the 3rd appeal. When the bridge program runs out in Jan 25, my insurance will kick in for it.

Look into Adbry instead of Dupixent.

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I have been taking Dupixent for a year with complete relief and minimal side effects (dry, itchy eyes occasionally). Most people who use it do so successfully, but those who have side effects are more likely to report them in groups like this. If there's one thing we know for sure about Grover's, it's that what works for one doesn't work for another. Please don't discourage a sufferer from trying a medication just because you were afraid to. But thanks for the report on Adbry.

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@groversgirl

Yes but on torso. Sorry you're dealing with this. Great advice on this site. Don't put anything irritating or abrasive on it. Sweat and abrasion together can make it worse. Those little dots need to heal and it can take a long time - the less you touch them the better. Use the gentlest soaps (only if absolutely needed) and creams or none at all. Gently blot dry or let air dry. They just need time to heal. I have also found anti inflammatory diet and supplements (including the cilantro) and a daily anti histamine help. Some people on this site have found oral or topical steroids, antibiotics or anti fungals help.

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I suggest not using soap at all as it dries the skin too much. Try a non-soap body wash instead. I finally found Cetaphil Flare Up Relief Body Wash, which is super moisturizing. I rarely have to use moisturizer anymore, which I like because moisturizer makes me sweat.

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@groversgirl

I also wear mostly cotton now due to my excema (which I have alongside Grovers). Thank you for these websites. Last winter I discovered State of Cotton for beautiful thick sweaters to replace my wool and cashmere - they are expensive but great quality.
I'm guessing I also have chemical allergies. Really need to look into it.
On top of the Grovers and excema, I have had almost 20 basal and squamous cell cancers removed, so that is always what I always focus on when I'm at the derm. But I need to tackle the excema too, which has a sluggish response to creams. I have basically given up on Grovers as it doesn't respond to any creams and it's fairly mild if I stay cool and don't put anything abrasive on or chemical on it.

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Have you tried Dupixent? It is FDA approved for eczema and works equally well for folks with Grover's.

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Does anyone else deal with being covered in goosebumps even where the Grover’s breakout is not flaring?

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