Grover's disease

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?

@ptownmama

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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Yeast can live inside and outside the body. My yeast issues were in the vulva, always burning, yet the vagina had no discharge or itch and yeast swabs negative. For years doctors gave me no help. Finally I went to a new gyno who said yeast can live inside tissue and had me read up on anti yeast diets. She said I could have the vulva biopsied but it was painful. I read up on anti yeast diets, Dr. Crook's simple plan solved years of misery in 6 weeks, without px med. Basically a detox with no sugar or carbs for 2 months, Zero, even natural sugar as fruit. Plus no fermented cheeses or mushrooms as they breed yeast. The yeast residing in the body will starve to death. After 6 weeks major improvement and feeling great at 2 months. Now 3 1/2 months later am allowed a moderate fruit serving a few times a week and non gluten carbs, just one small serving a day. I am so happy and motivated and now that my sugar withdrawal is over (yes it is addiction and the dying yeast sends messages to the brain to be fed, demands it which lasted me 6 weeks). Yet once the yeast has died off the sugar craving leaves. I can walk by desserts and my mouth no longer waters. Simple, inexpensive and if you are in enough misery you will give it a try. It's a challenge as all detox programs are.

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wow! Thanks for sharing! I'm not sure hubs can give up beer… lol.

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@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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Thank-you. This is all so new I think I'm still in shock. Mine also came on rather suddenly. What oral meds were you prescribed for the yeast infection?

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@gardeningjunkie

Yeast can live inside and outside the body. My yeast issues were in the vulva, always burning, yet the vagina had no discharge or itch and yeast swabs negative. For years doctors gave me no help. Finally I went to a new gyno who said yeast can live inside tissue and had me read up on anti yeast diets. She said I could have the vulva biopsied but it was painful. I read up on anti yeast diets, Dr. Crook's simple plan solved years of misery in 6 weeks, without px med. Basically a detox with no sugar or carbs for 2 months, Zero, even natural sugar as fruit. Plus no fermented cheeses or mushrooms as they breed yeast. The yeast residing in the body will starve to death. After 6 weeks major improvement and feeling great at 2 months. Now 3 1/2 months later am allowed a moderate fruit serving a few times a week and non gluten carbs, just one small serving a day. I am so happy and motivated and now that my sugar withdrawal is over (yes it is addiction and the dying yeast sends messages to the brain to be fed, demands it which lasted me 6 weeks). Yet once the yeast has died off the sugar craving leaves. I can walk by desserts and my mouth no longer waters. Simple, inexpensive and if you are in enough misery you will give it a try. It's a challenge as all detox programs are.

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GREAT post. Very informative.

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@secreto

Thank-you. This is all so new I think I'm still in shock. Mine also came on rather suddenly. What oral meds were you prescribed for the yeast infection?

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@secreto sure happy to share. Here’s the complete story … My first outbreak, he gave me just mometasone 0.1% cream. It took several months of treatment and did clear up (mostly). Then round 2 came, I used the same cream to no avail. I went back to see him as I thought I was going to scratch my skin off. He then said he though I had a secondary yeast infection. As a nurse, I’ve treated a lot of yeast skin infections and it didn’t present like a classic looking case. But I trusted him. He gave me oral diflucan 150mg with a second dose 5 days later. Then added Mupirocin 2% cream. I mixed the two creams together for months 2x day. I stopped the Mupirocin when the aweful itching subsided – did an extra week just in case. (Yeast is sneaky and will come back.) I’m pretty close to having this outbreak cleared up (fingers crossed) and just down to the mometasone cream now. Hope that helps. 🙂 Everyone seems to have different stories and different successes.

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@ptownmama

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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Yep – the GD is all over my torso. 🙁 Increase concentration under where my bra hits.

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@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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Doctor has now changed course of action once more. After the Calcipotriene Foam exacerbated the problem times 3 (for the second time – like once wasn't enough?), now I'm on Triamcinolone Acetonide again however a weaker dose of 0.025% instead of the usual 0.1% for two weeks. Then alternating ELIDEL (pimecrolimus) Cream 1% 5 days per week and the Triamcinolone 2 days per week from then on. We will then start a course of Isotretinoin after the required two week waiting period. So far the Triamcinolone has relieved the havoc of the Calcipotriene. Wondeing if I may be one out of every 300 people that has a Vitamin D allergy? (Used Walgreen's only coupon for non-generic Elidel $40 instead of Generic one at CVS for $160 – after Dr. re-approval for non-generic at my request. Generic at Walgreen's was $106. Amazing how they try to sell you the generic for much more!)

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@ethanmcconkey

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?

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Hi Ethan,
Thank you for your response. I haven't received much support for my Grover's other than topical steroid creams, which I don't use much because I'd rather find a more natural cure/relief if possible. My itching does seem to feel better when I take an antihistamine, Zyrtec. I'm looking into diet in terms of eating less histamine containing foods to see if that helps, as I'm wondering if there is a connection (since the antihistamine seems to help). I will check out the autoimmune group here on Connect, but have been part of a very helpful FB group for the past few years, called Hashimotos 411. Wondering if it's unusual to have it come on suddenly like mine did? Thank you!

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I just found a very interesting forum by many Grover's Disease victims on a site called Earthclinic.com. Look up Grover's Disease and check out the pages of comments. Many people are finding relief and cures by using high dose Vitamin A, and or, Cilantro, and zinc cream. Different methods by different people, but a lot of interesting, helpful, positive comments. The most successful options I've heard of so far!

Liked by gardeningjunkie

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@jbd3

Doctor has now changed course of action once more. After the Calcipotriene Foam exacerbated the problem times 3 (for the second time – like once wasn't enough?), now I'm on Triamcinolone Acetonide again however a weaker dose of 0.025% instead of the usual 0.1% for two weeks. Then alternating ELIDEL (pimecrolimus) Cream 1% 5 days per week and the Triamcinolone 2 days per week from then on. We will then start a course of Isotretinoin after the required two week waiting period. So far the Triamcinolone has relieved the havoc of the Calcipotriene. Wondeing if I may be one out of every 300 people that has a Vitamin D allergy? (Used Walgreen's only coupon for non-generic Elidel $40 instead of Generic one at CVS for $160 – after Dr. re-approval for non-generic at my request. Generic at Walgreen's was $106. Amazing how they try to sell you the generic for much more!)

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Just wanted to thank you for suggestion about Elidel at Walgreens as my insurance wants $100. I used the Elidel for perioral eczema break I had 6 months ago(one of my 2 other forms besides GD) and it cleared it up. Right now going on 6 months free of GD and I can't help think my sugar detox I began 3 months ago killing off the yeast in my body is helping lower inflammation. Internal yeast in the gut creates inflammation that can cause eczema breakouts.

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@ptownmama

wow! Thanks for sharing! I'm not sure hubs can give up beer… lol.

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I say to those not willing to give up a food or drink which may be the culprit- "You are not suffering enough". Due to other health issues I gave up alcohol over 3 years ago and believe me it was hard hard hard!!! I loved my vodka and red wine. Now I never think about it. I had a gathering at my house today serving beer and wine and was perfectly happy with my water. It can be done. Surprisingly it was just as hard for me to give up my sugar recently, yet going on over 3 months now and I am not kidding but I don't think about it any more. I do wonder how opium or oxicotine addicts succeed.

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@kg7382

@secreto sure happy to share. Here’s the complete story … My first outbreak, he gave me just mometasone 0.1% cream. It took several months of treatment and did clear up (mostly). Then round 2 came, I used the same cream to no avail. I went back to see him as I thought I was going to scratch my skin off. He then said he though I had a secondary yeast infection. As a nurse, I’ve treated a lot of yeast skin infections and it didn’t present like a classic looking case. But I trusted him. He gave me oral diflucan 150mg with a second dose 5 days later. Then added Mupirocin 2% cream. I mixed the two creams together for months 2x day. I stopped the Mupirocin when the aweful itching subsided – did an extra week just in case. (Yeast is sneaky and will come back.) I’m pretty close to having this outbreak cleared up (fingers crossed) and just down to the mometasone cream now. Hope that helps. 🙂 Everyone seems to have different stories and different successes.

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Thank-you kg. I appreciate your input and your medical background. I am not seeing the dermatologist for 3 weeks. My allergist diagnosed me and has prescribed triamcinolone for the gd, which helps a little. Just hoping my dermatologist has experience with this. I'm thinking of going to UAB or Emory for help.

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@secreto

Thank-you kg. I appreciate your input and your medical background. I am not seeing the dermatologist for 3 weeks. My allergist diagnosed me and has prescribed triamcinolone for the gd, which helps a little. Just hoping my dermatologist has experience with this. I'm thinking of going to UAB or Emory for help.

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Hope you find some relief soon!!

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I am a 36 year old male and I’ve had a rash that suddenly appeared on my chest and back. I’ve seen 3 different Drs and two of them suspect Grover’s disease. I had two biopsies done that came back as a drug rash but that can’t be it because I’m not on anything. I’m so frustrated. It has started coming down my arms now. I feel an ugly beast. The rash doesn’t respond to medicine. I’ve started looking up Grover’s disease and found an association with blood cancers. I am so freaked out. I just want this thing gone. I was just prescribed tetracycline so hopefully that does something. I’ve had all kinds of tests and scans so I shouldn’t be worried but I am. I can’t believe how much this has just completely effected me. The rash came on so suddenly. Is there anyone that can give me advice. I’ve also read that people have this for a long time too.

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@jpearo

I am a 36 year old male and I’ve had a rash that suddenly appeared on my chest and back. I’ve seen 3 different Drs and two of them suspect Grover’s disease. I had two biopsies done that came back as a drug rash but that can’t be it because I’m not on anything. I’m so frustrated. It has started coming down my arms now. I feel an ugly beast. The rash doesn’t respond to medicine. I’ve started looking up Grover’s disease and found an association with blood cancers. I am so freaked out. I just want this thing gone. I was just prescribed tetracycline so hopefully that does something. I’ve had all kinds of tests and scans so I shouldn’t be worried but I am. I can’t believe how much this has just completely effected me. The rash came on so suddenly. Is there anyone that can give me advice. I’ve also read that people have this for a long time too.

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@jpearo I’m not an expert by far, but GD certainly seems to an elusive vague disease. There seems to be an assortment of experiences and treatments. Mine also came on suddenly. I’m a 46 yo female – no meds and no health issues. I’ve been on daily creams pretty much since last summer. A little break last fall. My only risk factor that I can think of is a history of sun exposure 🙁 This is a nice group and lots of experiences that people share that may give you ideas – mostly how to manage it and no complete cures. I hope you get some answers soon!!

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