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?

@dkdarcik

That's a great idea! Saves the time of making a daily smoothie!
Were you in total remission after 6 weeks?? I'm still having breakouts after 8 weeks of cilantro- wishing and hoping for total remission soon…

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No, not total remission; but compared to the worst that it was, it"s a huge improvement. Since I may never know for sure what the triggers are, I'm much improved. Actually I feel as if I have my life back. With any illness, a toll is taken on your body. Perfection may not be attainable; but I'm very grateful that Grover's is no longer ruining every precious day. Keep going, you are on the right track!!!

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@dkdarcik

That's a great idea! Saves the time of making a daily smoothie!
Were you in total remission after 6 weeks?? I'm still having breakouts after 8 weeks of cilantro- wishing and hoping for total remission soon…

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In my case the new breakouts slowed and stopped after 6 weeks but it took almost 6 months or longer for all the scabs to drop off permanently. They just stayed the same for months on end, less itchy and less painful, but if scratched off they would scab over. I thought I would be scarred for life, but that was not the case.

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Hello all. I'm new to the group but so thankful I stumbled onto this site when looking up Grovers. I was diagnosed with Grovers disease in Feb 2021. I had what I thought was a heat rash under both breasts. My derm looked at it, suspected Grovers. This was confirmed by a biopsy and she also took my case to Grand Rounds and they all agreed it was Grovers with pics, hx and biopsy. It's been a very itchy, miserable couple of months. She had me try triamcinolone first, then we tried calcipotriene which actually seemed to make it worse. I had a really bad flare up about a week ago when I found your group and started reading. I've been doing daily cilantro smoothies and there has been a remarkable improvement. Itching is gone, redness is gone. Small bumps still visible but not irritated anymore. I am a middle aged women with history of asthma as a child, seasonal allergies. My history with vaccines is this:
Shingrix #1: 08/12/20
Shingrix #2: 10/26/20
Pfizer covid #1:12/29/20
Pfizer #2: 01/19/21

First call to my derm: 02/02/21

Thanks again for your suggestion of cilantro!

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@dkdarcik

I live in California and when we get the dry Santa Ana winds…that's a huge trigger for my GD. I increase the cilantro on those days and it seems to help somewhat. We are retiring next year to Ireland – I am so excited for the cold, humid weather!!! People without GD think I'm crazy but I just feel so much better in that climate!

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I agree about climate. As much as I’d like to live in Fl near friends I would not be able to tolerate the summers. Even slight climate change or high humidity causes outbreaks. I’m seeing what look like Grover lesions that resemble pimples on my arms and legs. I know they usually appear on trunk but for me no area is immune. I still think there is a connection with my stress and anxiety.

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@gardeningjunkie

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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Hi its GroverCleveland again.
Hope you're are doing ok.
My bedroom is 65 degrees 24/7. I sleep quite well.
Rest of house is 67-71.
Loose cotton clothes. Beware, be cause some cotton has a coarse weave. Buy expensive cotton clothes. Big difference.
Shower water is below 89 degrees always. Hot water is my enemy. Also use steroid cream sparingly. Never get on your hands, else the skin will thin. No caluses will grow. You will cut easily.
Just printed out NJ monthly temperature chart.
Installed new attic fan. Old one burned out.
Took 20 minutes to install new motor. It was 10:30 am and temperature was 77 and rising.
I started sweating and hurried up. Came down and cold showered immediately.
Cold water put my back in order.
I do not get itches, but I get several pain spots. Nobody can see anything like blisters.
But they are my "Heat/Rough Clothing Alarm".
I immediately find a cold place and remove shirts.
If its 85 outside and I do not move much, my back seems happy.
Ride bike 1 hour before dark.
Infared from Sun is bad news.
Take 8 benadryl 3 hours before bed if Back is bad. Next morning Back is Happy.
PS listen to the Gardner

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@grovercleveland

Hi its GroverCleveland again.
Hope you're are doing ok.
My bedroom is 65 degrees 24/7. I sleep quite well.
Rest of house is 67-71.
Loose cotton clothes. Beware, be cause some cotton has a coarse weave. Buy expensive cotton clothes. Big difference.
Shower water is below 89 degrees always. Hot water is my enemy. Also use steroid cream sparingly. Never get on your hands, else the skin will thin. No caluses will grow. You will cut easily.
Just printed out NJ monthly temperature chart.
Installed new attic fan. Old one burned out.
Took 20 minutes to install new motor. It was 10:30 am and temperature was 77 and rising.
I started sweating and hurried up. Came down and cold showered immediately.
Cold water put my back in order.
I do not get itches, but I get several pain spots. Nobody can see anything like blisters.
But they are my "Heat/Rough Clothing Alarm".
I immediately find a cold place and remove shirts.
If its 85 outside and I do not move much, my back seems happy.
Ride bike 1 hour before dark.
Infared from Sun is bad news.
Take 8 benadryl 3 hours before bed if Back is bad. Next morning Back is Happy.
PS listen to the Gardner

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Although my GD is in remission, like GroverCleveland I try to take precautions. My breakouts were the entire torso front and back initially, but with subsequent breakouts less on the chest and stomach and with the worst area the back. I have no doubt my skin has been altered because with GD there is a lack of collagen which connects our skin cells.
I try to get outside early and in before noon in the summer. M skin in that area feels different. I used to love to get messages, no more. Sweat on my back, even without the GD rash doesn't feel good. If I press hard on my back I can slightly feel the little tiny bumps which erupt into GD if I have stayed out too long in the heat and sweated. I immediately take a cool shower and promise myself I will take a day off out of the heat and let my skin calm. So far s good.
He's right about soft cottons. I can't tolerate pressure or scratchy clothing. Even 100% cotton knits feel softer then regular cotton fabric. I don't take Benadryl, however my doctor prescribed Hydroxyzine 25 mg to take in the evening. It is an antihistamine which can make people relax and I do feel it lowers my histamine level like Benadryl does.
The point about steroids is well taken. I did use steroids for over 15 years for hand eczema cause by an allergic form of eczema, ACD. I needed to get finger printed for a job after about 5 years of steroid periodic use and my fingerprints were not readable. I can't even see the with a magnifying glass. They are simply gone. Steroids do that because they thin the skin. For GD, which I got a decade later, the steroids, both oral and injected, didn't help at all. in truth no other treatment helped either until the cilantro detox.

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@looking4relief

Hello all. I'm new to the group but so thankful I stumbled onto this site when looking up Grovers. I was diagnosed with Grovers disease in Feb 2021. I had what I thought was a heat rash under both breasts. My derm looked at it, suspected Grovers. This was confirmed by a biopsy and she also took my case to Grand Rounds and they all agreed it was Grovers with pics, hx and biopsy. It's been a very itchy, miserable couple of months. She had me try triamcinolone first, then we tried calcipotriene which actually seemed to make it worse. I had a really bad flare up about a week ago when I found your group and started reading. I've been doing daily cilantro smoothies and there has been a remarkable improvement. Itching is gone, redness is gone. Small bumps still visible but not irritated anymore. I am a middle aged women with history of asthma as a child, seasonal allergies. My history with vaccines is this:
Shingrix #1: 08/12/20
Shingrix #2: 10/26/20
Pfizer covid #1:12/29/20
Pfizer #2: 01/19/21

First call to my derm: 02/02/21

Thanks again for your suggestion of cilantro!

Jump to this post

I'm so happy for you that the cilantro heavy metal detox is helping you. It seems to help about 50% of us so count yourself lucky. Without this site I would never have learned about it. Like you I started noticing an improvement with a few weeks.
Have you gone back and read our blogs since mid Feb 2019 when Kimass1 tipped us off about cilantro helping?

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@gardeningjunkie

I'm so happy for you that the cilantro heavy metal detox is helping you. It seems to help about 50% of us so count yourself lucky. Without this site I would never have learned about it. Like you I started noticing an improvement with a few weeks.
Have you gone back and read our blogs since mid Feb 2019 when Kimass1 tipped us off about cilantro helping?

Jump to this post

Try hydrocortisone cream. I am also waiting for a biopsy for grocers.

REPLY
@grovercleveland

Hi its GroverCleveland again.
Hope you're are doing ok.
My bedroom is 65 degrees 24/7. I sleep quite well.
Rest of house is 67-71.
Loose cotton clothes. Beware, be cause some cotton has a coarse weave. Buy expensive cotton clothes. Big difference.
Shower water is below 89 degrees always. Hot water is my enemy. Also use steroid cream sparingly. Never get on your hands, else the skin will thin. No caluses will grow. You will cut easily.
Just printed out NJ monthly temperature chart.
Installed new attic fan. Old one burned out.
Took 20 minutes to install new motor. It was 10:30 am and temperature was 77 and rising.
I started sweating and hurried up. Came down and cold showered immediately.
Cold water put my back in order.
I do not get itches, but I get several pain spots. Nobody can see anything like blisters.
But they are my "Heat/Rough Clothing Alarm".
I immediately find a cold place and remove shirts.
If its 85 outside and I do not move much, my back seems happy.
Ride bike 1 hour before dark.
Infared from Sun is bad news.
Take 8 benadryl 3 hours before bed if Back is bad. Next morning Back is Happy.
PS listen to the Gardner

Jump to this post

Yes! no longer sitting in the sun,I also use sarna a great cream that works for itching,at walmart-

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@caery170

Try hydrocortisone cream. I am also waiting for a biopsy for grocers.

Jump to this post

One of the allergens on the 5 Day Extended Patch Test for Allergic Contact Dermatitis, ACD I tested positive to is in hydrocortisone. I had to argue with a gynocolgist who insisted I must use it and that there was no such allergy. Well the reason this is included on the test is because some people like me are. I sent that gynos office a copy of my test report and found another gynocolgist. Those of us with eczema that have self educated ourselves are often surprised at how many doctors are ignorant when it comes to our disease. It's understandable why we were ignorant in the beginning.
If your biopsy for GD comes back negative it may not mean you don't have it . I had all the classic symptoms' and yet my biopsy was negative, that was because by the time I found a derm who didn't simply assume it was my ACD it had been going on for almost a full year and had about run it's course for the 1st breakout. The papuales, although crusted were not active. As you will learn, even when going dormant it takes months for them to fall off. I could have had another biopsy when 6 months later my recurrence began, but I didn't bother.

REPLY
@gardeningjunkie

One of the allergens on the 5 Day Extended Patch Test for Allergic Contact Dermatitis, ACD I tested positive to is in hydrocortisone. I had to argue with a gynocolgist who insisted I must use it and that there was no such allergy. Well the reason this is included on the test is because some people like me are. I sent that gynos office a copy of my test report and found another gynocolgist. Those of us with eczema that have self educated ourselves are often surprised at how many doctors are ignorant when it comes to our disease. It's understandable why we were ignorant in the beginning.
If your biopsy for GD comes back negative it may not mean you don't have it . I had all the classic symptoms' and yet my biopsy was negative, that was because by the time I found a derm who didn't simply assume it was my ACD it had been going on for almost a full year and had about run it's course for the 1st breakout. The papuales, although crusted were not active. As you will learn, even when going dormant it takes months for them to fall off. I could have had another biopsy when 6 months later my recurrence began, but I didn't bother.

Jump to this post

Yeah,that's very true about the biopsy. At first it came back as.medicine related. Right after I had acid reflux they put me on Sulfameth and omneprozole I started the rash under my breasts and burning and itching of the skin.the rash just disappears,no scabs fall off – the sarna really helps.another week for the final results!! Is it stress related?

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@caery170

Yeah,that's very true about the biopsy. At first it came back as.medicine related. Right after I had acid reflux they put me on Sulfameth and omneprozole I started the rash under my breasts and burning and itching of the skin.the rash just disappears,no scabs fall off – the sarna really helps.another week for the final results!! Is it stress related?

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will it ever go away?

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