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?

Hi @43219876x, welcome to Connect! Grover’s disease or Transient Acantholytic Dermatosis, is a rare condition but I found that some standard therapies include mild topical steroids, antihistamines, and some oral drugs. You can read more about this here: http://rarediseases.org/rare-diseases/grovers-disease/

I’m also tagging @jbmakos who has reached out about Grover’s in the past; I hope that he will share his experience with you. Have you tried any oral treatments yet?

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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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@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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In the above post That should be Sarna anti itch lotion.

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You mean Sarna over the counter lotion. It helps.
I’ve had Grovers for three years and its not seasonal. I benefit from cortisone cream and Light Therapy. I’m told it will go away when its reaady to.

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@jbmakos

You mean Sarna over the counter lotion. It helps.
I’ve had Grovers for three years and its not seasonal. I benefit from cortisone cream and Light Therapy. I’m told it will go away when its reaady to.

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Two months ago I too was diagnosed with Grover’s Disease. It is VERY itchy. Is your Grover’s very itchy? It’s so itchy, and it’s worst in the evening, so I can’t help but think it could be scabies. However, two biopsies have come back negative for scabies and “consistent with Grover’s disease”. A 20 day course of prednisone did relieve the itch quite a bit and the rash got better and almost went away. But it came back once I was off prednisone. I am on a topical steroid that helps with the itch for a while, then it comes roaring back. What to do?!?!

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I am in my 4th year with Grovers. With me, it got worse as I also had skin bleeds easily ( treat spots wit hydrogen peroxide and wash garment/sheets).
I am a lot better now but still itch. But most of the skin bumps are gone. My treatment was/ Triamcinolone cream and Sarna anti itch lotion. But what also helped greatly was and is Light therapy in the Dermatologists office . A full box treatment(long light bulbs).
at 3 days a week maxing at 4 minutes per front and back each. Now I’m once a week at two minutes. But I skip a lot. Its a slow treatment. I still use the cream and Sarna as needed.
Good luck.

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@jbmakos

You mean Sarna over the counter lotion. It helps.
I’ve had Grovers for three years and its not seasonal. I benefit from cortisone cream and Light Therapy. I’m told it will go away when its reaady to.

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Hello @zeke1,

Welcome to Connect.
I found this Mayo Clinic article which you may wish to view: Treatment for Grover’s Disease Geared Toward Relieving Itching and Rash: http://mayocl.in/2s9qHo2

I’m also tagging @shirlwpb @cindylou on this message as they have asked questions about Grover’s in the past.
@zeke1, have you discussed trying light therapy (phototherapy) with your doctor?

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@jbmakos

You mean Sarna over the counter lotion. It helps.
I’ve had Grovers for three years and its not seasonal. I benefit from cortisone cream and Light Therapy. I’m told it will go away when its reaady to.

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Hello @kanaazpereira,
Thank you for the article, yes, I’ve seen it. I will ask my doctor about light therapy.

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@jbmakos

You mean Sarna over the counter lotion. It helps.
I’ve had Grovers for three years and its not seasonal. I benefit from cortisone cream and Light Therapy. I’m told it will go away when its reaady to.

Jump to this post

My Grovers was very itchy for about 2 years then it subsided. Now I’m mildly itchy. Ask your doctor about light therapy. For me after a couple of months of 3 times a week treatment it helped significantly.

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I have had Grovers disease for over four years, diagnosed for 1 1/2. None of the patent medicine was effective enough. Then I learned that the rash is triggered by eating foods containing SULFITES. They are naturally occurring in several commonly eaten foods ie. grapes (vinegar, wine etc,), peppers, onions, garlic, soy, peanuts, cabbage, brussel sprouts, molasses, mushrooms. Sulfites are added to many packaged foods and sprayed on much American produce for preserving a fresh look. SOLUTION: Buy organic produce and meats, grow your own, use rice vinegar. Knowing this has GREATLY REDUCED my occurances of the Grover's rash. Also a very effective topical cream is available on Amazon called "Eczur Cream" by Elimia. It costs $23 +/- for a very small plastic jar. But you don't need much and it works, especially after showering with a low chemical soap.Now I go weeks at a time with no itchy bumps!

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Thanks so much for offering your insights, @solroczile7. Sharing experiences, offering support and learning from one other – that's Connect in action!
You mentioned "use rice vinegar." Could you explain a little more about that?

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I have been dealing with eczema for 18 years now, having my first case of hand eczema at age 50. Now I know I have 3 specific types of eczema, but that took years to get figured out and my self education helping direct my doctors saved my life, literally. My pain and misery was great. mM sleepless nights were spent trying to figure out the cleanest and most painless way to kill myself and not trouble my husband with cleanup.
As most derms just call it eczema and want to treat all symptoms with steroids which in my case is wrong because out of the 5 classes of steroids my 5 Day Extended Patch Test showed I am allergic to one class which also has a cross over to 2 other classes so for years the steroid treatments I was told to use were actually part of the problem. I have had Grover's for 3 years now but can't use many suggested treatments like cortisone, I'm allergic, or some of the topicals because I also have Allergic Contact Dermatitis, ACD. What has helped to stall the severe break out is Calcipotriene Cream or Ointment. For itch relief the best I have found that is also free of my allergens, plus trying many the only one that has ever helped is Flanax Liniment, it is capsaicin (hot pepper). My derm recommended I try after research testing recently that validated success with capsaicin giving itch relief, Google it. Sounds scary? When applied you will feel a medium burning sensation which ironically is a relief from the itching and pain. Then in a few minutes, perhaps 5, you will get relief from at least 50%of pain and itching for about 30-45 minutes which gives me enough time to fall asleep on my side, the only area free of pain on torso. I've learned to move in my sleep. I use a long handled spoon to apply treatments to middle of back you also can use vinyl gloves or plastic gloves (I am allergic to all other materials in protective gloves). Do not touch this cream with your hands, use a Q-tip to remove from container. Do not allow to touch your hands because you might rub your eyes or mouth. It doesn't rub off onto bed clothes or bedding. The bottle is small but lasts for at least 4 months, as just a tiny amount is spread around. I buy on Amazon, 2 oz bottle. Also great on insect bites.
My first breakout was 1 year and a doozy, as I couldn't even lean back while driving a car because any pressure on my back was so painful, the second was 6 months almost as painful and my recent one for 6 ended a month ago. My last breakout was less severe by 50% perhaps because of personal disciple. I have disciplined myself to come inside by noon as heat and sweat are 2 major triggers. Friction from off roading in a bouncing vehicle or bouncing in a boat is also an trigger. If I do break my rule about coming inside when the heat hits, I try to give myself a few days off from heat, sweating or friction, this will calm the pustules, which even when dormant can still be felt with a slight pressure with my hands. Changing my lifestyle is a daily challenge as 90% of my retirement activities involve the outdoors, but my new realistic goal is to live as pain free as possible. I have joined a bookclub and and considering making a quilt but my soul yearns for the outdoors. Like many with Grover's, I met basically every one of the conditions that we seem to have in common, except being male. Most of us have spent too much time in the sun. A hospitalization for a week requiring bed rest at home for about 2-3 weeds about the time I developed Grover's I also have a form of leukemia or lymphoma, mine Chronic Lymphocytic Leukemia, CLL, (not my reason for week in hospital) which was diagnosed 18 years ago and has never slowed me down one day!!! Yet I still plan to stain the deck rails today and feel great and will take advantage of this moment.

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