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?

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For those new to blogging on this site, on a different GD discussion kimass1 is the angel that shared information about cilantro as a heavy metal detox which can put GD in remission for some. I believe this posting was in Feb of 2019. Thank you thank you, thank you dear kimass1. I have no doubt without your input I would still have cycles of GD outbreaks today.
My torso skin is completely normal, yet after detoxing with cilantro it took over year for the last papuale scab to fall off. If I scratched the dormant papuale off, they would scab again, but not itch or hurt like before. It took over 2 years for my skin not to be sensitive to the touch. I have resumed my compulsive landscape gardening, off roading and rock collecting even in the heat.
I'm so glad you're doing well, if I remember it took you awhile to get results.

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Been following along for about 6 months from when my first outbreak happened and I was diagnosed. I have tried most of what has been shared. I have been lucky and don't have much of the itch. Just the dots/rash. I have noticed that when I am consistent with cilantro smoothies, drinking lots of water and most recently think that when I drink more alcohol frequently I get more flare ups. I may try to cut alcohol all together for 30-60 days to see if I notice anything. Has anyone experienced or noticed a correlation between alcohol consumption and flare ups?

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73 yo male, Grover's for 10 months. As others have reported, winter can exacerbate GD. That was my case as I entered my first winter with GD; the worst outbreak since my first. A couple of weeks ago I overindulge for the holidays by drinking more alcohol than is my custom. That night I was miserable with itching and rashes. I customarily have one or two glasses of wine (red or white) with dinner most every evening. For the next few days I decided not to drink any alcohol and my itching subsided dramatically. After a week I was even able to cut back on antihistamines, which I had been taking daily for the last 9 months. After two weeks my rash and bumps have quieted down considerably. I had an appointment with my dermatologist a week ago and asked him about my experience. He said alcohol dilates the blood vessels of the skin allowing more blood to the surface. He added that, in the blood are white blood cells with histamines. I asked if it's just wine, and he said no, any alcohol. So apparently avoiding alcohol means less histamines thereby less itching. Now, Grover's is a "transient" disease so it's hard to be certain of anything, but I'm hoping this lasts and that other's may benefit. Happy New Year Fellow Travelers!

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@olddog

73 yo male, Grover's for 10 months. As others have reported, winter can exacerbate GD. That was my case as I entered my first winter with GD; the worst outbreak since my first. A couple of weeks ago I overindulge for the holidays by drinking more alcohol than is my custom. That night I was miserable with itching and rashes. I customarily have one or two glasses of wine (red or white) with dinner most every evening. For the next few days I decided not to drink any alcohol and my itching subsided dramatically. After a week I was even able to cut back on antihistamines, which I had been taking daily for the last 9 months. After two weeks my rash and bumps have quieted down considerably. I had an appointment with my dermatologist a week ago and asked him about my experience. He said alcohol dilates the blood vessels of the skin allowing more blood to the surface. He added that, in the blood are white blood cells with histamines. I asked if it's just wine, and he said no, any alcohol. So apparently avoiding alcohol means less histamines thereby less itching. Now, Grover's is a "transient" disease so it's hard to be certain of anything, but I'm hoping this lasts and that other's may benefit. Happy New Year Fellow Travelers!

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I rarely drink alcohol so that isn’t my problem for the intense itching. I do love my dairy so trying to back off that, not sure if it’s helping. Just started cilantro capsules, has been a week and the itching is not as intense maybe 🤞….

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@aliskahan

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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Hydrox hel

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@solroczile7

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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do you have a definite connection with those foods and not fresh or "organic" ? I use Head and Shoulders nightly but have tried a tar shampo. Both about same. Have you needed antihistamines at night ? First time with gd at 83 but lots of sun damage skin and many benign keratoses for 30 years.

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Hello All, I’m new to Grover’s, just came down with it June 2022, I was 71. Tried every over the counter cream I could find. Some helped for an hour and others did nothing. After a Dr tried everything he knew what to do. I went to a dermatologist, right away said this is GD. Took a sample to test and it came back positive. I was put on OC allergy pills, and steroid cream for 2 months. Help some with the itching but not with anything going away. I knew Chinese herb medicines work for different things. So I found this stuff on Amazon. Picture included. It has in 2 days taken the itch and redness away. Then yesterday I had shrimp for dinner. Last night every little bump was now a big throbbing itching bump. Then I remember reading in the blog that shell fish and make it go wild. Well it does.
On the over the counter creams I spent over $150 on creams that do nothing. This Chinese cream works better the the steroid cream ever did.
Also doing Cilantro Smoothies.

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In 1992, at age 51, I had a large melanoma removed from my back. At that time I was getting a lot of seborrheic keratoses, and some actinic keratoses, and had a kind of rash of small red spots on my chest. I saw another dermatologist who biopsied the red spots which turned out to be Grover's Disease. Other than annual full body exams for a possible recurring melanoma and a few basal cell carcinomas removed, I didn't have any more problems until January 2007. The Grover's was always there but didn't seem to bother me.

At the end of 2006, I retired and moved from a foggy climate to a more dry climate. By January 2007, I started having terrible itching on my chest and back. A new dermatologist again biopsied the red spots and they were still Grover's. He prescribed ointments, including a pretty expensive one (Dovenex), but none of them helped very much. The only thing that sort of worked, out of many tried, was Eucerin Itch Relief. Most of the time I was reading and posting on a website called Skincell. There were many people with many wild (IMO) theories as to what causes Grover's. Some attributed it to the mercury in their dental fillings and were having all their fillings removed and redone. In addition to the itching, the red spots often got a little crusty and would sting if I got sweaty.

I finally got an appointment with Dr. Jack Resnick at UCSF in June 2008. He prescribed Gabapentin (Neurontin), 300 mg every night and the itch went away. It was gone until about June 2021 when it started coming back slowly. I don't know if the Gabapentin really worked or the disease just went away for 13 years.

UCSF was across two bridges and about 35 miles away so I had found a dermatologist closer to home for my annual exams. As the itch became as bad as it's ever been, I've tried to get the new dermatologist and my PCP to prescribe something to help. The derm prescribed Triamcinolone Acetonide Cream, which can cause or worsen glaucoma. As my wife has some serious glaucoma, I couldn't risk it. I used the Eucerin Itch Relief for a few months then my PCP prescribed Hydroxyzine which gives me some relief as it makes me go to sleep. When it wears off after about six to seven hours, the itching come back. To honest, I'm not sure if the widespread keratoses don't also itch.
Apparently, the website Skincell is no longer what it used to be and this site is one where I can find other people discussing Grovers. I was hoping there had been some kind of breakthrough in the last 15 years. Apparently not. I'm now also on the Facebook Grover's page. I'm curious about the Cilantro and Chlorella smoothie approach but I'm one of those people to whom Cilantro tastes like soap. I'm thinking about tablets of both of those.
This site allows me to see what other people are trying and, sometimes, succeeding with. I'm due for my annual visit to the dermatologist and I'll have something to discuss with him and maybe prompt him to become a little more interested in the problem.

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@sw2237

Hello All, I’m new to Grover’s, just came down with it June 2022, I was 71. Tried every over the counter cream I could find. Some helped for an hour and others did nothing. After a Dr tried everything he knew what to do. I went to a dermatologist, right away said this is GD. Took a sample to test and it came back positive. I was put on OC allergy pills, and steroid cream for 2 months. Help some with the itching but not with anything going away. I knew Chinese herb medicines work for different things. So I found this stuff on Amazon. Picture included. It has in 2 days taken the itch and redness away. Then yesterday I had shrimp for dinner. Last night every little bump was now a big throbbing itching bump. Then I remember reading in the blog that shell fish and make it go wild. Well it does.
On the over the counter creams I spent over $150 on creams that do nothing. This Chinese cream works better the the steroid cream ever did.
Also doing Cilantro Smoothies.

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Do you think the Cilantro smoothies are helping? I'm curious about them but Cilantro tastes like soap to me and I can't imagine what Chlorella tastes like Thinking about the tablets of both.
.

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@itchyrich

In 1992, at age 51, I had a large melanoma removed from my back. At that time I was getting a lot of seborrheic keratoses, and some actinic keratoses, and had a kind of rash of small red spots on my chest. I saw another dermatologist who biopsied the red spots which turned out to be Grover's Disease. Other than annual full body exams for a possible recurring melanoma and a few basal cell carcinomas removed, I didn't have any more problems until January 2007. The Grover's was always there but didn't seem to bother me.

At the end of 2006, I retired and moved from a foggy climate to a more dry climate. By January 2007, I started having terrible itching on my chest and back. A new dermatologist again biopsied the red spots and they were still Grover's. He prescribed ointments, including a pretty expensive one (Dovenex), but none of them helped very much. The only thing that sort of worked, out of many tried, was Eucerin Itch Relief. Most of the time I was reading and posting on a website called Skincell. There were many people with many wild (IMO) theories as to what causes Grover's. Some attributed it to the mercury in their dental fillings and were having all their fillings removed and redone. In addition to the itching, the red spots often got a little crusty and would sting if I got sweaty.

I finally got an appointment with Dr. Jack Resnick at UCSF in June 2008. He prescribed Gabapentin (Neurontin), 300 mg every night and the itch went away. It was gone until about June 2021 when it started coming back slowly. I don't know if the Gabapentin really worked or the disease just went away for 13 years.

UCSF was across two bridges and about 35 miles away so I had found a dermatologist closer to home for my annual exams. As the itch became as bad as it's ever been, I've tried to get the new dermatologist and my PCP to prescribe something to help. The derm prescribed Triamcinolone Acetonide Cream, which can cause or worsen glaucoma. As my wife has some serious glaucoma, I couldn't risk it. I used the Eucerin Itch Relief for a few months then my PCP prescribed Hydroxyzine which gives me some relief as it makes me go to sleep. When it wears off after about six to seven hours, the itching come back. To honest, I'm not sure if the widespread keratoses don't also itch.
Apparently, the website Skincell is no longer what it used to be and this site is one where I can find other people discussing Grovers. I was hoping there had been some kind of breakthrough in the last 15 years. Apparently not. I'm now also on the Facebook Grover's page. I'm curious about the Cilantro and Chlorella smoothie approach but I'm one of those people to whom Cilantro tastes like soap. I'm thinking about tablets of both of those.
This site allows me to see what other people are trying and, sometimes, succeeding with. I'm due for my annual visit to the dermatologist and I'll have something to discuss with him and maybe prompt him to become a little more interested in the problem.

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Hello ItchyRich
I did find that the Triamcinolone didn’t last more than 4 hours. My dermatologist want to get me pills, but I don’t like taking pills that might fix one thing but then cause another.
As for the smoothie, I’ve only been doing it for 3 days, and I believe it takes longer to help.
Here’s what I do and you don’t taste the cilantro.
I use a single cup blender.
4 stocks of Cilantro
4 strawberries
1 container of yogurt, vanilla or strawberry
4 teaspoons of honey
1-1/2 to 2 cups of milk
This cream made in China, in picture about sold on Amazon works very good. I can go all day.
Tubes are small, mostly you can just put a dab on each or area.
Now I messed mine up by eating shrimp, so she’ll fish are a problem. It flared up big time. That was two days ago and I’m starting to get some relief again.

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