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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Finally got an appointment at Mass General Brigham and Women’s dermatology clinic in Boston. Had to switch health insurance that cost me thousands but hopefully worth it. Tomorrow is the day and I am excited to see if one of the best hospitals in the world can offer a definitive diagnosis and plan for managing this condition.

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@jtboston

Finally got an appointment at Mass General Brigham and Women’s dermatology clinic in Boston. Had to switch health insurance that cost me thousands but hopefully worth it. Tomorrow is the day and I am excited to see if one of the best hospitals in the world can offer a definitive diagnosis and plan for managing this condition.

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Good Luck!!

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Well the journey continues. Now it is not Grover’s and is Pityriasis Lichenoides…

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New to me is skin peeling on my sides accompanied by the sunburn feeling, prickled, pain to the touch. Was diagnosed with Grovers last year but pimply outbreaks are very rare and clear up quickly with steroid cream. Dermatologist is now questioning what this really is; has done extensive blood tests and even an x-ray and is still stumped. I'm going to a functional medicine doctor to investigate gut health; he thinks it could be the root cause. I'm living with it; Cerave itch cream relieves the symptoms for the most part. No significant trouble sleeping or functioning, just annoyed with the uncomfortableness that is rather constant.

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@nodgabnoj

I have been taking the extract for a couple of years. I just got tired of making the smoothies. Does it work? I'm pretty sure the smoothies worked for me, two years of them. I believe the extract may work, but not as effective as the fresh. I do take the extract even when the G D is in remission. I do believe that it helps limit the out breaks. I mix it in with juice, two droppers instead of one, once a day with no side effects. I will take it until I am convinced that the disease is in full remission, which may never happen. Good luck.

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when you say two full droppers are you meaning the entire tube is filled??

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@dickblack

when you say two full droppers are you meaning the entire tube is filled??

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It’s impossible to completely fill the droppers. I fill the about 3/4 full.

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@nodgabnoj

It’s impossible to completely fill the droppers. I fill the about 3/4 full.

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And you use two of those every day? seems like a pretty big dose, right!

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@dickblack

And you use two of those every day? seems like a pretty big dose, right!

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Yes it is, but I personally don't see any downside.

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Hi, from Italy. I've been fighting against Grover for two and a half years: I started with cortisone pills (which works as long as you can take it); then 3 months of Dupixent, with no result; then some months with a retinoid, Acitretin, an again no result. Now again a monoclonal antibody, Adtralza injections (Tralokinumab) and after four months ...no result. Doctors who are treating me say that I have to continue for some more months because Tralokinumab works very slowly. ??? Meanwhile I get some relief only using Clobesol cream. I'd like to know how many of you had similar treatments having a complete, (complete and final!) healing. Or a complete healing with different drugs. Grazie e ciao!

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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 was on Adbry for two years. Loved it…but my lungs didn’t! I didn’t realize at first that it was a side effect. Constant cough frequent colds and finally difficulty breathing to the point where I had to have a lung function test. I thougght I was dying. Now off the Adbry and miserable as ever with my GD which took three months but is now back with a vengeance !!

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