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43219876x
@43219876x

Posts: 1
Joined: Sep 24, 2016

Grover's disease

Posted by @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?

REPLY

Hi @veggiema and welcome to Connect! That must be frustrating to have it come on so suddenly.

I wanted to introduce you to @gardeningjunkie @robrash @jameswb @kg7382 and @ptownmama as they have Grover's and may be able to offer support and ideas to how to treat this disease.

I also wanted to share this link to the Autoimmune Disease group on Connect, where you can discuss your autoimmune disease symptoms with others and potentially receive support.

Autoimmune Diseases: https://connect.mayoclinic.org/group/autoimmune-diseases/

Back to you @veggiema you mentioned you were diagnosed recently, what treatment have your physician's offered at this time?

We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

@ptownmama

We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

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Interesting about the vitamin A. A topical prescription Vitamin D3 topical is Calcipotriene Cream or Dovonex and has helped me. Developed to be primarily used for plaque psoriasis it seems to stall my GD breakouts. If already broken out it keeps the breakout from getting worse. Very expensive and I was better buying it with GoodRx the free coupon site on the internet than my Humana Medicare Pharaacy supplement. 60 gram tube without insurance around 300 but with GoodRx paid 100, yet it lasts. Even though the torso is a large area to cover it spreads well and takes very little. GD is baffling, as it comes and goes even when it seems the typical triggers have been avoided. AS I tell all, go to dermnetnz.org, best eczema site for less common forms of dermatitis or eczema like GD. Have been in remission now for almost 6 months, my longest break and only use the Calcipotriene about once every week or 2 if I start to feel a tingle and bumps beginning to form. Also believe my candida detox is helping all my eczema issues, (I have 3 forms), as residual candida in our intestines raises our histamines. No candida issues now after 6 weeks of detox and on maintenance plan. Basically zero processed sugar for life, no natural sugar as in fruit for 2 months and then only add back a few pieces a week.Zero carbs for 2 months and now can have small servings of non gluten carbs a few days a week. I feel fantastic and surprisingly to me, after 6 weeks of detox the candida symptoms disappeared along with my sugar craving. Yes sugar is an addiction and although my diet wasn't heavy in processed sugar, just a normal amount, I ate way too much fruit. At least 3 pieces a day and fruit is loaded with sugar. This sugar fed my candida residing in my intestines. Now it is killed because it starved to death. While dying it sends stong messages to our brain to be fed! An addiction just like nicotine or alcohol or other drugs. It will be interesting to note when my next break out happens with GD, as I know it will, but hoping this stalls the breakout longer.

@ptownmama

We have really struggled. I do have something that may help forever or temporarily. My husband was told to take 150,000 units of vitamin A per day (50,000 three times per day) for 2 weeks. The grovers was almost gone. Then after 2 weeks, he was supposed to go down to 50,000 per day and within a few days of the lower dose, it started coming back. 🙁 He also developed a second rash that we weren't sure if it was a reaction to the allergy pills (go figure) or a virus. That went away and is now back (without the allergy pills for weeks). I feel like he has some sort of systemic thing, but bloodwork and urinalysis are all normal. Someone else told me to try having him each a bunch of cilantro each day (but we haven't tried yet) and zinc (both topically and orally).

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Sorry to hear your husband is dealing with this. Interesting about the Vitamins. I was just diagnosed summer 2018. I did have a short lived “remission” but have been dealing with it consistently since. I’m a 46 y/o female, no health conditions, no medications, not over weight, no food allergies… this just came out of no where. I am an RN and have likely been exposed to lots of things – but there doesn’t seem to be any sort of external link. 🙁 I will gladly share any wisdom as I venture down this road. Best wishes!

Thanks for your reply! I appreciate your input!

@kg7382

Sorry to hear your husband is dealing with this. Interesting about the Vitamins. I was just diagnosed summer 2018. I did have a short lived “remission” but have been dealing with it consistently since. I’m a 46 y/o female, no health conditions, no medications, not over weight, no food allergies… this just came out of no where. I am an RN and have likely been exposed to lots of things – but there doesn’t seem to be any sort of external link. 🙁 I will gladly share any wisdom as I venture down this road. Best wishes!

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A link to Grover's. Perhaps it is just genetic like many believe the most common form of eczema is- Atopic. The majority are born with it. These unfortunate eczema sufferers have to with eczema all their lives. So very difficult.

One theory about GD is that most seem to have spent time outdoors with lots of sun exposure. It's more prevalent in men, especially those that worked outdoors. Most get later it life (though not all) as if it took time for the sun damage to take affect.

Yes I spend lots of time in the sun growing up and living at the beach and still to this day involved with boating and outdoor activities. I can remember every summer our backs would burn, our parents would put white vinegar on to help cool the burn. After several burns and peels we would not long burn, even if swimming in the ocean all day. So in my case that could be a reason. Yet I know others who have spent as much or more time in the sun than me without getting GD, so back to the genetic tendency idea.

Liked by kg7382

So sorry to hear about your GD diagnosis. Our MD prescribed steroid based cream and ointment, and we supplement with Gold Bond anti-itch and eczema lotions. My wife initially had outbreaks in breast area, and now has spread to other parts of body- I sincerely hope yours stays confined to the one area. Another possible treatment that may be the best is UV light treatment- after 10-12 treatments it is significantly abated if not gone.

My wife and I contracted GD from some external unknown source, and has confounded 3 different Dermatologist. We are scheduling the light treatment in the coming weeks.

Liked by kg7382

Light therapy significantly helped me. But its not for everyone, but try it.

Liked by kg7382

@jbmakos

Light therapy significantly helped me. But its not for everyone, but try it.

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Hello. I have done light therapy several times. It does help most of the time tho I can continue to have breakouts as it goes along.

I have had GD for over 5 years now on my chest. First dermatologist prescribed Salex cream (6% salicylic acid) and also used OTC hydrocortisone 1% cream & gel. keeps itch under some control but virtually no help. Went on with this therapy for 4 years until I finally decided I need some more professional help. The new Doctor tried many things, Hydrocortisone 2.5%, then Triamcinolone Acetonide 0.1% lotion with tetracycline pills, no help. Fluocinonide cream 0.05% and cortisone shot, only slight help but not much. Calcipotriene cream 0.005%, this made it way worse. Then tried Impoyz clobetasol propionate 0.025%, this seemed to help the most after a week but never fully went away, and you can only use this cream for two weeks maximum at a time. During two weeks off it comes right back again. Then I tried Eucrisa 2% for about a month, started getting worse (even used with occaisional Impoyz too every third day). He also started the light box at his office – needs to be approved by insurance. Now he put me back on Sorilux calcipotriene foam 0.005%, he said the foam delivery might make a difference. So far it's getting much worse after a week but I've read somewhere that it may do this before starting to get better. We are going to start a course of Isotretinoin pills in a couple weeks. Those pills successfully eliminated my acne in my late 20's. I am now 57, male.

Have you tried light therapy? It helped me in a big way.

@veggiema

Hi – I am a 65 year-old woman, andI was just diagnosed with Grover's Disease by a punch biopsy. I've had the rash for 6 months now, and it came on pretty much overnight. Traveling from a vacation in Denmark, back to California. I also have Hashimoto's, and have been on a very specific diet for the past 4 years, called AIP, Autoimmune Paleo protocol. While in Denmark, I ended up eating several things off the diet, including gluten. So, not sure how much diet contributes to GD. Though, it's hard to imagine the symptoms could come on that quickly – I felt fine the entire 3 weeks I was in DK. It seemed to come on during travel home. I am also wondering if it could be autoimmune related in any way.

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Hello everyone. I was also diagnosed with Gd 2 weeks ago but have been miserably symptomatic for 4 months. So far the hydrocortisone and triamcinolone Rx along with steroid shots have provided limited relief. We thought it might be a reaction to the biological infusion I'm on for RA. Right before this started I went on a low carb diet mainly to cut out most of the sugar in my diet. Makes me wonder if there is any connection since I've had such a sweet tooth my entire life. I am happy to have found this site since this is all so new (and awful) and look forward to learning from all of you. Again nothing has really helped so far.

@secreto

Hello everyone. I was also diagnosed with Gd 2 weeks ago but have been miserably symptomatic for 4 months. So far the hydrocortisone and triamcinolone Rx along with steroid shots have provided limited relief. We thought it might be a reaction to the biological infusion I'm on for RA. Right before this started I went on a low carb diet mainly to cut out most of the sugar in my diet. Makes me wonder if there is any connection since I've had such a sweet tooth my entire life. I am happy to have found this site since this is all so new (and awful) and look forward to learning from all of you. Again nothing has really helped so far.

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I’m very sorry to hear you are miserable. I certainly wish there was a quick fix for this. Mine came out of nowhere as well last summer. My recent outbreak was complicated but a secondary yeast infection. So my dermatologist treated me orally and topically for that in addition to the topical steroid. Once the yeast cleared up, the extreme itching and pain was much improved. Not sure if that is helpful.

@jbd3

I have had GD for over 5 years now on my chest. First dermatologist prescribed Salex cream (6% salicylic acid) and also used OTC hydrocortisone 1% cream & gel. keeps itch under some control but virtually no help. Went on with this therapy for 4 years until I finally decided I need some more professional help. The new Doctor tried many things, Hydrocortisone 2.5%, then Triamcinolone Acetonide 0.1% lotion with tetracycline pills, no help. Fluocinonide cream 0.05% and cortisone shot, only slight help but not much. Calcipotriene cream 0.005%, this made it way worse. Then tried Impoyz clobetasol propionate 0.025%, this seemed to help the most after a week but never fully went away, and you can only use this cream for two weeks maximum at a time. During two weeks off it comes right back again. Then I tried Eucrisa 2% for about a month, started getting worse (even used with occaisional Impoyz too every third day). He also started the light box at his office – needs to be approved by insurance. Now he put me back on Sorilux calcipotriene foam 0.005%, he said the foam delivery might make a difference. So far it's getting much worse after a week but I've read somewhere that it may do this before starting to get better. We are going to start a course of Isotretinoin pills in a couple weeks. Those pills successfully eliminated my acne in my late 20's. I am now 57, male.

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I was prescribed steroid cream applied then wet wraps. I sometimes get it all over my body, so after cream applied, I wet a cotton t shirt, and leggings, wring out until just damp, and stay in them for 1 hour..3x daily. ..Dr prescribed. Not the most comfortable, but very relieving. I wear my husband's big terry robe over, as the wet wraps get cold. Also take Hydroxyzine and allergy pills when needed. My drs from Mayo clinic are adamant about gentle skincare, using only Vanicream bar soap, and body cream. Absolutely No hot showers. Diet is not my trigger point. In my case, its possibly blood condition related. Heat, and sweating may trigger an outbreak for me…yet sometimes it doesn't. I get more of a horribly itchy, blistering rash. Last full outbreak was soooo widespread, I felt sick with chills and exhaustion. My meds do help with symptoms, not a cure. Hope you get help!!!

@kg7382

I’m very sorry to hear you are miserable. I certainly wish there was a quick fix for this. Mine came out of nowhere as well last summer. My recent outbreak was complicated but a secondary yeast infection. So my dermatologist treated me orally and topically for that in addition to the topical steroid. Once the yeast cleared up, the extreme itching and pain was much improved. Not sure if that is helpful.

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Was the yeast on your skin? Just curious because we got thrush out of nowhere last year and other odd things…

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