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?

I know you hate cilantro and please remind me how long your have been drinking the cilantro smoothie, how much you use, and is it daily. I started after Kimass1 recommended it and that was over 6 months ago and haven't missed a day. It stopped a beginning breakout for me but it took months to heal about 95%. Now it is 99.9% gone and no re- occurrence yet. Did you go off the daily smoothie and then get the new breakout? Must say your rash is classic in appearance. My sister is like you as she only gets it under her breasts, I fit the more classic profile coverage areas. I will never go off this treatment as long as it keeps this miserable disease dormant in me. They say sweat is one of the triggers, but I know when broken out sweat hurts and stings. Now healed it doesn't hurt.

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Yes, six months of cilantro smoothies (daily) is absolute minimum. Takes that long to knock out the lightest case of GD. I used for seven and still take at least twice a week.

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Glad you are still in remission with fewer doses a week. I can't help but wonder if it does work as a heavy metal detox which cleans out the heavy metals and so isn't needed daily. I'm simply too afraid to cut back. Lots of internet information about cilantro as a heavy metal detox.

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@carrie14

Is there anything different that could have made it flare up?

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I see in your prior posts that you were on isotretenoin for 5 months and have recently been off of them for about 2-3 months….did you stop taking them because your doctor advised you to and you were clear? Also, have you started back on them again?

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@carrie14

I see in your prior posts that you were on isotretenoin for 5 months and have recently been off of them for about 2-3 months….did you stop taking them because your doctor advised you to and you were clear? Also, have you started back on them again?

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Yes – I was clear by the second week (February), but stayed on for 5 months just to be sure (doc wanted 6 but I asked to go off at 5 months). I was so tired of the side effects being very, very dry skin. Lips are the worst part, almost unbearable. I have felt two instances of festering of Grover's along a crease across the front of my chest (where I had it before, 5 years). I quickly did cilantro smoothies but just can't seem to stay on them. I do one cilantro pill a day (I thought it might have caused some acne on my chest before). When it festers (can't think of a better way to say it) I have a lot of extra isotretinion pills, so I take one per day for 6 days. It's gone by day three. I can't think of anything I did to bring it on except I've had some health issues and I've been working out very, very hard and running even. Lot's of treadmill but I always do that. I did use a tanning bed a couple few weeks ago. Wondering if that did not help. Gardenjunkie – I find it interesting that you and you sister both have GD. Some sort of genetic thing possibly? I get eczema too – on my lower legs just above ankles. Always same places. Usually in winter – very dry conditions. Triamcinolone usually takes it right away. Now I use a lot of Neutrogena Hydro Boost, especially on the legs – arms.

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@jbd3

Yes – I was clear by the second week (February), but stayed on for 5 months just to be sure (doc wanted 6 but I asked to go off at 5 months). I was so tired of the side effects being very, very dry skin. Lips are the worst part, almost unbearable. I have felt two instances of festering of Grover's along a crease across the front of my chest (where I had it before, 5 years). I quickly did cilantro smoothies but just can't seem to stay on them. I do one cilantro pill a day (I thought it might have caused some acne on my chest before). When it festers (can't think of a better way to say it) I have a lot of extra isotretinion pills, so I take one per day for 6 days. It's gone by day three. I can't think of anything I did to bring it on except I've had some health issues and I've been working out very, very hard and running even. Lot's of treadmill but I always do that. I did use a tanning bed a couple few weeks ago. Wondering if that did not help. Gardenjunkie – I find it interesting that you and you sister both have GD. Some sort of genetic thing possibly? I get eczema too – on my lower legs just above ankles. Always same places. Usually in winter – very dry conditions. Triamcinolone usually takes it right away. Now I use a lot of Neutrogena Hydro Boost, especially on the legs – arms.

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I'm glad you have some extra pills you can take for those few days. I am going to wean off the isotretenoin in early January and I'm hoping to stay clear. I have continued the cilantro smoothies daily and actually really enjoy them. I do still have increase itching and redness on my chest about a week before my monthly cycle so I feel like there is some kind of hormone connection to mine. One thing that I have decided to do is genetic testing to confirm or rule out Darier's Disease which is what 2 dermatologists said I have. I disagree and think I have GD but in order to prove one of us right, I will need to do genetic testing to see if I have the mutated gene for Darier's or not. I told my dermatologist that if the testing comes back negative and I don't have Darier's Disease then my assesment of GD must be correct, and she said that's a good possibility. I also went to an allergist to see if they thought it was an allergic reaction to something and they did not think so, but I asked for a progesterone skin prick test and they said they could do it but it's not covered by insurance and would cost me over $200. I told them that I would wait to see what genetic tests found first. All of these different tests and appointments cost me so much per month even with insurance but I am not willing to let someone guess at what is wrong, I want a difinitive answer. I used to work out very hard up to 3 times a week, but since sweating seemed to exacerbate my skin, I have stopped. So for now I keep on with this daily regiment and come January we will see what happens when I stop. I really want to get laser treatments for my chest but have to be off isotretenoin for at least 6 months.

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@jbd3

Yes – I was clear by the second week (February), but stayed on for 5 months just to be sure (doc wanted 6 but I asked to go off at 5 months). I was so tired of the side effects being very, very dry skin. Lips are the worst part, almost unbearable. I have felt two instances of festering of Grover's along a crease across the front of my chest (where I had it before, 5 years). I quickly did cilantro smoothies but just can't seem to stay on them. I do one cilantro pill a day (I thought it might have caused some acne on my chest before). When it festers (can't think of a better way to say it) I have a lot of extra isotretinion pills, so I take one per day for 6 days. It's gone by day three. I can't think of anything I did to bring it on except I've had some health issues and I've been working out very, very hard and running even. Lot's of treadmill but I always do that. I did use a tanning bed a couple few weeks ago. Wondering if that did not help. Gardenjunkie – I find it interesting that you and you sister both have GD. Some sort of genetic thing possibly? I get eczema too – on my lower legs just above ankles. Always same places. Usually in winter – very dry conditions. Triamcinolone usually takes it right away. Now I use a lot of Neutrogena Hydro Boost, especially on the legs – arms.

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Seems GD is not supposed to be genetic according to doctors. Yet what are the odds we both got it in our 60's. I do have 2 other forms of eczema. Do you have Allergic Contact Dermatitis, ACD causing the rash on lower legs, perhaps from elastic or blended material in socks? Why is it hard to stay on the cilantro smoothies. I learned I can freeze it, which helps. I buy 4 bunches at a time, use 1/2 bunch a day for 6 days (I have learned how to store in frig ad keep it fresh) and with the 3rd bunch I freeze after purchase in 2 divisions and then use that for 2 more days. Yet if you travel staying on the smoothie would be challenging. I have heard the cilantro pills do not help.

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@carrie14

I'm glad you have some extra pills you can take for those few days. I am going to wean off the isotretenoin in early January and I'm hoping to stay clear. I have continued the cilantro smoothies daily and actually really enjoy them. I do still have increase itching and redness on my chest about a week before my monthly cycle so I feel like there is some kind of hormone connection to mine. One thing that I have decided to do is genetic testing to confirm or rule out Darier's Disease which is what 2 dermatologists said I have. I disagree and think I have GD but in order to prove one of us right, I will need to do genetic testing to see if I have the mutated gene for Darier's or not. I told my dermatologist that if the testing comes back negative and I don't have Darier's Disease then my assesment of GD must be correct, and she said that's a good possibility. I also went to an allergist to see if they thought it was an allergic reaction to something and they did not think so, but I asked for a progesterone skin prick test and they said they could do it but it's not covered by insurance and would cost me over $200. I told them that I would wait to see what genetic tests found first. All of these different tests and appointments cost me so much per month even with insurance but I am not willing to let someone guess at what is wrong, I want a difinitive answer. I used to work out very hard up to 3 times a week, but since sweating seemed to exacerbate my skin, I have stopped. So for now I keep on with this daily regiment and come January we will see what happens when I stop. I really want to get laser treatments for my chest but have to be off isotretenoin for at least 6 months.

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Were you biopsied for GD? I was and it came back negative but I was at the end of my first outbreak, going on 1 years, the scabs were beginning to fall off. My sister's GD is dramatically less severe than mine yet her biopsy came back positive. She has an ongoing rash under her breasts. My derm said the GD must be in the active stage for biopsy to be accurate. No doubt I have it so no point in another biopsy, also I am symptom free right now.

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@gardeningjunkie

Were you biopsied for GD? I was and it came back negative but I was at the end of my first outbreak, going on 1 years, the scabs were beginning to fall off. My sister's GD is dramatically less severe than mine yet her biopsy came back positive. She has an ongoing rash under her breasts. My derm said the GD must be in the active stage for biopsy to be accurate. No doubt I have it so no point in another biopsy, also I am symptom free right now.

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2 years ago I was biopsied and it came back as Darier's Disease. My symptoms were more mild then and for about a year it came and went easily. Then last year it came back again and I was biopsied a second time and also they said Darier's or Grovers. I see my symptoms more reflect GD which is why I need to do genetic testing as Darier's is genetic. My sister has similar skin to me and she does have skin rashes occasionally but nothing like mine. She has never been biopsied. My rash is on my chest so I already have two scars on my collarbone area that are visible so I really don't want anymore. I have never had the rash anywhere other than on my chest and neck. Never my trunk area. Right now my worst symptom is the constant itching that has improved with cilantro smoothies but not gone completely.

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So many diseases we never know about until we find out we have them. You have made me curious about the Darier's as I have never heard of it before. I will look up and wonder if it is in the eczema family. It took me months for my beginning breakout to heal on the cilantro treatment. Using the cilantro it stopped the progress with in a week or two and the itching was dramatically reduced and I never got pain which I normally do, but the rash just hung on. Now 8 months only about 3 tiny scabs left, if they fall off the skin doesn't heal and new scab appears but without itching. I do believe the health of our skin is permanently altered. If Darier's itching is improved drinking cilantro I wonder if Darier's issues are related to heavy metal toxins which cilantro is suppose to draw from our bodies.

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@gardeningjunkie

So many diseases we never know about until we find out we have them. You have made me curious about the Darier's as I have never heard of it before. I will look up and wonder if it is in the eczema family. It took me months for my beginning breakout to heal on the cilantro treatment. Using the cilantro it stopped the progress with in a week or two and the itching was dramatically reduced and I never got pain which I normally do, but the rash just hung on. Now 8 months only about 3 tiny scabs left, if they fall off the skin doesn't heal and new scab appears but without itching. I do believe the health of our skin is permanently altered. If Darier's itching is improved drinking cilantro I wonder if Darier's issues are related to heavy metal toxins which cilantro is suppose to draw from our bodies.

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I had never heard of Darier's Disease either until my biopsy came back as that. I was very worried since it's genetic and I have two boys that I worry would then get it as well. Then I started to research it more and I was sure that it was not what I had. Since Grovers and Dariers can resemble eachother, they are often misdiagnosed as one or the other. I am going to do the genetic test to confirm so that I can either know my boys may get it or not. If it is in fact Grovers, then I'm going on a year now that I have been dealing with it. Darier's usually does not flare up and last that long. My moms side of the family in the women have been predisposed to have a lot of liver spots (sun spots) and so I expected I would inherit that which I do have on my upper thighs, tops of my hands, and on my collarbone area but never did they look like a rash or itch. My sister does have a slight rash on her chest/neck area every now and then but it goes away in a few days…mine has not.

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My first outbreak lasted 1 year with GD and then my pattern had been 6 months clear and 6 months symptomatic for 4 years. My first outbreak was about 30% worse then the subsequent ones (have read this is typical). Let's hope your first outbreak is coming to an end. Right now still clear (going on 1 year now) because when my 6 month outbreak started end of last March cilantro stalled it then stopped it. Just bought more cilantro today!

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@gardeningjunkie

My first outbreak lasted 1 year with GD and then my pattern had been 6 months clear and 6 months symptomatic for 4 years. My first outbreak was about 30% worse then the subsequent ones (have read this is typical). Let's hope your first outbreak is coming to an end. Right now still clear (going on 1 year now) because when my 6 month outbreak started end of last March cilantro stalled it then stopped it. Just bought more cilantro today!

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I have had GD for almost 2 years, (Biopsy confirmed), and have relied on Corticosteroid cream for relief. Recently I was prescribed oral Prednisone for 12 days for an unrelated inflammatory condition and enjoyed 14 days of "no itch heaven" . I have read an article in a U.S.publication, (I live in Australia), which contained the comment – "oral prednisone is very common", in the treatment of GD and was wondering if you have any knowledge of clinical results which might back up this statement, especially with regard to mild dosage extended use.

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@billjim651

I have had GD for almost 2 years, (Biopsy confirmed), and have relied on Corticosteroid cream for relief. Recently I was prescribed oral Prednisone for 12 days for an unrelated inflammatory condition and enjoyed 14 days of "no itch heaven" . I have read an article in a U.S.publication, (I live in Australia), which contained the comment – "oral prednisone is very common", in the treatment of GD and was wondering if you have any knowledge of clinical results which might back up this statement, especially with regard to mild dosage extended use.

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As a treatment for GD my experience with Prednisone over an extended period has not been a happy one .My adrenal glands were effected and my Dermatologist advised against it and advised a tropical treatment
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