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

Skin Health | Last Active: Dec 6 3:31pm | Replies (2018)

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@mariannj

I don't have the time to research when I last wrote but, short story, had Grover's in early 2019 and after almost going insane I began the cilantro smoothies and got relief within a few months and it was totally gone within 8 months but continued smoothies intermittently. Then in 2020 I developed GCA, went on heavy duty high doses of prednisone, suffered every possible side effect (also lost my husband that year) and developed Grover's again this past September 2021. This time it came back as never before. Entire torso, all sides and I learned pressure and heat aggravate it. Because I was immobile due to muscle myopathy I was often in a leather recliner and my back became intensely involved. (I have since put a cotton sheet over it.) Alone in house, I had no way of applying anything. I I tried long handled things.) I went through every cream you have all mentioned, and my MD daughter finally said to take a valium at night to help sleep. That only worked a few times. Then she said to try a Benedryl with it. Worked a little better. The cilantro is doing nothing for me this time. Of course the triamcinolone never worked either. The prednisone caused me to develop avascular necrosis in both hips (bone death) so first hip replacement is February 28, less than a week away. I believe stress from my husband's death brought on the GCA and then the prednisone reduced my immunity to zero, which, coupled with the stress, triggered the Grover's. The only thing I have not done is the UVA treatment and don't intend to. My diet and supplements are extremely healthy. The prednisone gave me a severe case of Cushing Syndrome so the Grovers is even in my groin, where I have folds that never existed before after beginning to finally reduce weight. The hip pain is nothing compared to the itch/burning/pain of Grovers. I continue to get new ones and feel I am destined to continue until all health issues are resolved and I am off prednisone (another 7 months if lucky). I wear nothing but cotton and rarely anything with a waist because of the pressure. Same for undergarments. I only dress to see a doctor. I haven't given up on the cilantro. This time I truly believe it will not go away and I will go insane (just kidding) but I am seriously close to it. How can one little tiny pimply type thing cause so much pain and itch? Some of them are not even red. In additions, I have leiomyomas which also itch. I have a genetic mutation for HLRCC but so far have not had the cancer. And that is me now. I often think of my old friends on here and wonder how they are doing. Unable to sit for long periods of time I have not been on my computer. I send my well wishes to all of you and ask for your good thoughts next Monday when I have my hip replacement. I am hoping the pain meds the following week will numb the itching.

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Replies to "I don't have the time to research when I last wrote but, short story, had Grover's..."

That's just terrible to hear and I wish you a speedy recovery from all your suffering. I wish there were more I could say or do. Also, thanks for your comments on prednisone. I went to a dermatologist recently and saw a Physician's Assistant for another minor skin problem and told him I also had Grover's. He asked me if I wanted to try prednisone for it and claimed it was the "go-to" treatment for Grover's. From all my reading here on this forum, I was highly skeptical of that claim, but I took the scrip and got it filled, but decided not to take any of it for awhile since I had read that it can possibly suppress your immune system which is something none of us needs with COVID still hanging around. After reading your experience after taking it, I will definitely NOT be taking that stuff!

Like others that have learned from your experiences I have appreciated your comments on this blog I feel close to you. Your honestly has touched all of our hearts. I am so very sorry for your pain and misery right now and do hope pain meds can give you relief. I'm hoping your hip replacement gives you relief.

Mariann, good luck with hip replacement. I would give some tea tree oil cream a try, it has pretty much eliminated my Grover’s disease. Certainly worth a try.