Grover disease: is a final healing possible???

Posted by italiangrover @italiangrover, Jan 13, 2025

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 if some 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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Profile picture for groversskin2025 @groversskin2025

I came down with a major skin rash and itch after having Covid in 2024. My dermatologist took a biopsy, and it was diagnosed as Grover's disease. Because the rash and itch was so terrible all over my truck and abdomen. The treatment was steroid shots every week. It took almost 4 months of steroid shots to partially cure the outbreak. After the steroid shots my skin became so thin and brittle that anything would break it and my hair also fell out. It finally helped and the Grover's syndrome was under remission. Until now (01/ 2025) after having the Flu, the rash came back. Because of my terrible experience with the steroid shots, I am now looking for alternative treatments and suggestions. I am female, very active, 82 years old, and work part-time.

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I'm sorry to hear that you're also battling this aggravating rash. Look up the comments posted by @gardeningjunkie. She has all sorts of good information and remedies. Mind you, everyone is different and what works for one person might not work for another. Beyond frustrating! I hope you find something that helps.

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Profile picture for italiangrover @italiangrover

Cilantro...cilantro...cilantro : it did nothing to me. I reduce itching and burning with Clobesol; but I (like everybody!) want a complete recovery. And that seems impossible. Anybody here got it??? And how?
Like every two weeks, since August 28, today I'll have my two injections of Adtralza (Tralokinumab), waiting, waiting...

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Cilantro seems to help only at 40% of us. Will you share how you injested the cilantro- fresh, fresh frozen or pills and how long you kept trying this treatment. Only fresh or fresh frozen worked for me, about 1/2 a bunch blended daily for about 6 months, yet some improvement was beginning within a month.
Steroid's have been mentioned as helping, in my case I didn't notice any improvement but did find I got negative side effects like groversskin2025 mentioned, especially hair loss.
Before cilantro I tried dozens of treaments with no benefit, however I was unaware of Tralokinumab, in fact it's the first I've heard it mentioned and am hopeful for other's. If I still had active.GD issues I would check that out

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Bonjour, nouveau diagnostic Maladie de Grover, je souhaite être informé des nouvelles approches de traitement pour maladie de Grover.

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In reply to italiangrover, it's my understanding that Grover's is a lifelong malady, that there is no "cure." All treatments are aimed at symptoms. As explained by the administrator of the Grover's Support Group on Facebook, who has deeply researched Grover's, "In the most basic terms Grover’s Disease occurs when our skin stops producing sufficient, functional connective tissues to hold our skin cells together. This occurs when the genes that instruct our connective tissues to produce new desmosomes to replace the old ones are altered and no longer function as designed. That alteration in those instructional genes reduces the production of healthy, functional desmosomes. The result of fewer functional desmosomes to hold our skin cells together is microscopic separations between skin cells. Those separations create tiny injuries to our skin that our body tries to heal through its inflammatory immune response. That inflammation is what causes our skin to erupt in the itching, stinging rash symptom that we are all familiar with.
Most of the treatments offered by doctors and our friends here in this group are to provide relief for the itching and rash caused by Grover’s Disease but do nothing to change the underlying reason why we get that rash to begin with. The root cause for the rash is based in the genetic instructions of our growing desmosome tissues and there is currently no known medication or gene therapy to correct the genetic instructions that cause us to stop producing healthy, functional desmosomes." It is recognized, however, that some sufferers go into lengthy periods of remission.

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The genetic part rings true. My Dad had pemphigus-the worst. My cousin and her family have Haley Haley the second worst. I have Grover’s which started 2 1/2 years ago. I’m 68. I posted a few months ago that my swimming pool water helps stop the itching. I don’t over chlorinate my pool like public pools do. Also if legal in your area or you have a card topical lotion from a marijuana dispensary has helped. I switch between that Triamcinolone and pool water to try to soothe the itching. Hope some of this might help. Prayers to all who suffer from this. Hopefully a breakthrough will be found!

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