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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@ib66

Has anyone experienced an itchy scalp from Grovers? If so, have you had good experiences with a shampoo/ conditioner that relieves the itching? Thanks!

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Yes it spread to my scalp. Derm gave me some rx shampoo which really didn’t help much and it had scary ingredients so I quit using and I find that Head n Shoulders (I like apple) and Selsun blue works best, also use them as body shampoos when rash really gets bad. Good luck!

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@hawkssr

Yes it spread to my scalp. Derm gave me some rx shampoo which really didn’t help much and it had scary ingredients so I quit using and I find that Head n Shoulders (I like apple) and Selsun blue works best, also use them as body shampoos when rash really gets bad. Good luck!

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Thank you!

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I have been using PURA D'OR Scalp Therapy Shampoo & Healing Conditioner which I got on Amazon. It seems to help a lot. Good luck to you!

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@ib66

Has anyone experienced an itchy scalp from Grovers? If so, have you had good experiences with a shampoo/ conditioner that relieves the itching? Thanks!

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Had Grovers itch for 18 months in 2007 and 2008. Itchy scalp was helped by Neutrogena T Gel shampoo. My itch started again maybe 18 months ago but the scalp itch I have now seems to be from Seborrheic Keratoses. I got 13 years of itch relief from 300 mg of gabapentin a day but it stopped working so I'm looking for more relief at the moment. I can get 4 to 6 hours of relief from Eucerin Itch Relief or the prescribed hydroxyzine.

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Is anyone suffering from the oral part of Mucous Membrane Pemphigoid?
Hoping it does not go to my eyes.

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@rllarocca

I have also been recently diagnosed with Grover's on my back and waist. I am a 67 yo male so am more typical. My dermatologist prescribed a cortico-steroid cream which has resulted in some improvement. He also recommended Sensa anti itch cream which also gives relief from the itching. BTW, mine came out during chemotherapy for hairy cell leukemia in September and is only now starting to resolve. From what I read, it can it can erupt when there are other health issues, and is seasonal.

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I have it everywhere. Back, chest, legs and arms. Started with cortisone cream and then went to a serious round of prednisone that started at 60 mg. I’m about to start a retinoid cream and waiting on delivery. In the meantime my MD suggested spray on Aquaphor. This seems to have not only reduced the itch but also the inflammation. I would recommend.

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Got GD around New Years 2023. Broke out virtually overnight. Suffered for about 6 weeks with red spots & ITCH! No topicals, Rx or OTC cremes/lotions/ointments did any good. Finally derm says decreasing dose of Prednisone should, in his words "Knock it down". It did! It did not return after 6 day descending dosage was complete. It's now been about 3weeks, and it has NOT returned w/a vengeance as some have said it may/would. My question is now this: while spots have faded, you can still clearly see where they were. #1) Will they fade away completely? #2) If GD does return, will these same spots again redden & become itchy. or will completely new spots appear in other locations? FYI, I had GD on upper outer thighs, sides of torso, lower back, rash on arms & elbows, some lower leg spots & even on my left foot. Currently taking Fish oil, Vit. D3, and L Lysine that I had. Also consuming one Cilantro smoothie/day, as I kind of like them. Thank you for any response/info regarding my two questions. Good luck to all with this horrendous affliction. Hoping my case stays in remission!

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@woody92354

Got GD around New Years 2023. Broke out virtually overnight. Suffered for about 6 weeks with red spots & ITCH! No topicals, Rx or OTC cremes/lotions/ointments did any good. Finally derm says decreasing dose of Prednisone should, in his words "Knock it down". It did! It did not return after 6 day descending dosage was complete. It's now been about 3weeks, and it has NOT returned w/a vengeance as some have said it may/would. My question is now this: while spots have faded, you can still clearly see where they were. #1) Will they fade away completely? #2) If GD does return, will these same spots again redden & become itchy. or will completely new spots appear in other locations? FYI, I had GD on upper outer thighs, sides of torso, lower back, rash on arms & elbows, some lower leg spots & even on my left foot. Currently taking Fish oil, Vit. D3, and L Lysine that I had. Also consuming one Cilantro smoothie/day, as I kind of like them. Thank you for any response/info regarding my two questions. Good luck to all with this horrendous affliction. Hoping my case stays in remission!

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Have never heard anything good about Prednizone as a permanent treatment. Get on the Facebook Grover's Disease page and read about it. Steroids can be dangerous long term. I've never used it. I hope it worked for you. I have had GD for a very long time and the only thing that worked for a long time was Gabapentin, which worked for 13 years and then, just quit working.

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@itchyrich

Have never heard anything good about Prednizone as a permanent treatment. Get on the Facebook Grover's Disease page and read about it. Steroids can be dangerous long term. I've never used it. I hope it worked for you. I have had GD for a very long time and the only thing that worked for a long time was Gabapentin, which worked for 13 years and then, just quit working.

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I was diagnosed with GD in 1976, and I have never heard of this drug, but all indications are that it is for seizure control. Was it a dermatologist that prescribed this for Grover's?

The only treatment that has worked for me is Light Phototherapy, which has kept my GD in remission for more than five years. It is non-invasive, painless, and consumes very little time. My treatments last less then three minutes.

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@woody92354

Got GD around New Years 2023. Broke out virtually overnight. Suffered for about 6 weeks with red spots & ITCH! No topicals, Rx or OTC cremes/lotions/ointments did any good. Finally derm says decreasing dose of Prednisone should, in his words "Knock it down". It did! It did not return after 6 day descending dosage was complete. It's now been about 3weeks, and it has NOT returned w/a vengeance as some have said it may/would. My question is now this: while spots have faded, you can still clearly see where they were. #1) Will they fade away completely? #2) If GD does return, will these same spots again redden & become itchy. or will completely new spots appear in other locations? FYI, I had GD on upper outer thighs, sides of torso, lower back, rash on arms & elbows, some lower leg spots & even on my left foot. Currently taking Fish oil, Vit. D3, and L Lysine that I had. Also consuming one Cilantro smoothie/day, as I kind of like them. Thank you for any response/info regarding my two questions. Good luck to all with this horrendous affliction. Hoping my case stays in remission!

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I'm glad steroids worked for you; they did nothing for me.
Give your papule scars time, yes, they will go away. In my case it took over a year for them to completely heal. It took longer than that to not have pressure hurt my back and a massage would feel good today.
Cilantro did the trick for me, not one other treatment worked. After two years in remission, I started getting a few itchy, stinging papules starting to appear on front torso and then the back torso. I've been back to my blended cilantro. I did it daily for 2 weeks and now several times a week and have healed with no new erupted papules, however if I press hard on my skin on my upper back, I can feel a few little bumps under the skin. Previously all my breakouts had thousands of these little under the skin bumps. After my 2 years in remission my skin felt normal again. I was thinking I was cured, but now face the reality that this is a chronic disease and am vigilant and appreciate my good health today and take advantage of every blessed day without this debilitating disease.

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