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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@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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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.

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@locutus

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!

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I'm not sure if I mentioned that steriod's, oral and injected cause trememdous hair loss. I'm off all steroids for eczema, but last July had steroids injected into my knees, supposedly targeted and time released and explained it would work for 3 months. Yes my knee pain was gone, but that treatment, even though it was supposed to be limited to the knee area, causedthe worst hair loss on my head I ever had from other steroids, starting about 2 1/2 months after the injections. The steroid has worn off exactky 3 months later as advertized, so pain is back. My new hair growth is about 5 inches long. If I kept up with this treatment I would surly go bald.

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@jameswood40

Have heard good things about DUPIXENT.Have you had any experience with DUPIXENT for Grovers disease..thanks JFW

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Good afternoon @jameswood40. It is wonderful to receive your first post. Thank you for a great question. I wonder if there is some information on their website. Do you have Grover's? Would the itch symptoms be different?
Chris

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@artscaping

Good afternoon @jameswood40. It is wonderful to receive your first post. Thank you for a great question. I wonder if there is some information on their website. Do you have Grover's? Would the itch symptoms be different?
Chris

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I have had grovers for over 2 years and mostly use sarna.facebook has a grovers website that has almost 1000 members.there are many recommended treatments.several people have had good results with DUPIXENT.it is expensive but does not seem to have any significant complications

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@gardeningjunkie

I'm not sure if I mentioned that steriod's, oral and injected cause trememdous hair loss. I'm off all steroids for eczema, but last July had steroids injected into my knees, supposedly targeted and time released and explained it would work for 3 months. Yes my knee pain was gone, but that treatment, even though it was supposed to be limited to the knee area, causedthe worst hair loss on my head I ever had from other steroids, starting about 2 1/2 months after the injections. The steroid has worn off exactky 3 months later as advertized, so pain is back. My new hair growth is about 5 inches long. If I kept up with this treatment I would surly go bald.

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Thanks for even more confirmation that the steroids are a bad idea. I will definitely NOT be using them. Glad to hear your hair is making a recovery!

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@gardeningjunkie

I'm not sure if I mentioned that steriod's, oral and injected cause trememdous hair loss. I'm off all steroids for eczema, but last July had steroids injected into my knees, supposedly targeted and time released and explained it would work for 3 months. Yes my knee pain was gone, but that treatment, even though it was supposed to be limited to the knee area, causedthe worst hair loss on my head I ever had from other steroids, starting about 2 1/2 months after the injections. The steroid has worn off exactky 3 months later as advertized, so pain is back. My new hair growth is about 5 inches long. If I kept up with this treatment I would surly go bald.

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Have you tried Hyaluronic acid for your knees? 3 injections over 3 weeks. Pretty effective. Also, for fairly quick temporary relief I use Voltarin, over the counter. It can be a godsend. A non-steroidal cream for arthritis joint pain. Several orthopedists have recommended it to me.

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@nodgabnoj

Have you tried Hyaluronic acid for your knees? 3 injections over 3 weeks. Pretty effective. Also, for fairly quick temporary relief I use Voltarin, over the counter. It can be a godsend. A non-steroidal cream for arthritis joint pain. Several orthopedists have recommended it to me.

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Thanks for your recommendations. I've been taking Hyaluraonic Acid dietary supplement, 100 mg daily. If it's helping it isn't noticeable. Your success with injections gives me hope and I will discuss that with my orthopedist. I had never heard of the HA injections. My knees don't hurt unless I walk on a slope or attempt to get off the ground (not sure how much longer I can even do that). So I'm lucky not to be in constant knee pain, I can walk on level ground without issues. My thumb arthritis is a deep ache, noticeable at night while in bed, my hands feel strained and hurt when I totally straighten them out. Not enough to affect my life much yet, but the rapidity of the deterioration is troubling.
I've read about the Voltarin and have been considering topical OTC Voltarin, for reasons like you noted- most claim it helps relieve pain and it's non-steroidal, but I have read that even the topical can raise blood pressure, which I have had since age 50. So once again I will discuss that with my cardiologist I can make a better decision. I'm not even supposed to take Aleve or Advil, yet I've been super active in my landscaping hobby and have been forced to take Aleve, but I limit it to 1/2 tablet daily. Tylenol is recommended, but for me it provides no benefit.

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The H.A. was not too effective for me on the first go round. The second proved much better. A friend of mine had great results the first time he got the shots. Who knows? I use the Voltarin quite often for my shoulders which I really screwed up in the gym. I pretty much have the same problem as you, in that stairs and inclines are difficult, but walking on a level surface is no problem. I hope you get good news from the docs, and this stuff proves to be of value.

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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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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.

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I developed Grovers’ on my back about two years ago. Nothing in particular had happened except some long term stress and disappointment. The itch was almost unbearable! It felt like a rash but no one could actually see the bumps just had to feel them…no color. I use bare minimum warm, not hot, water for showering. I also started sleeping with no top which seemed to greatly reduce night sweating. I used CeraVie cream on my back morning and for bedtime. The itch has lessened thank goodness! Doc did suggest light therapy if it didn’t improve. Almost always on the back … no known cause or cure !!!

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