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?

@aprilfool

It seems many of us have secondary skin issues in addition to the Grover's diagnosis. I suspect I may be in the same boat. In my late 20's-early 30's, I would get hives every time I took a hot shower, but that was so different. These were big welts, all over my torso, front and back. Nobody every figured out why and they mysteriously went away. Now, 15 years later, this pops up and is possibly also related to heat and/or sweat. Have any of you seen an endocrinologist and had a thorough work-up? My derm thinks that's going to be my next step if this week's blood/urine tests don't show anything abnormal. Also, (just venting here), I find it discouraging how outdated the research is considering how many people this affects (compared to the 70's) and how uncomfortable it can make us. I still have half my life ahead of me and may have to deal with this for all of it? Someone please study this further!

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I believe the lack of research concerning eczema is that although at times we wish we were dead, it doesn't kill us. Yet the focus for much research is about childhood diseases which often Atopic is and it is Atopic with the big Dupixent breakthrough that helps some.
I do know most of us with Grover's have other auto-immune disease issues complicating everything; I used to have Leukemia.

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@aprilfool

It seems many of us have secondary skin issues in addition to the Grover's diagnosis. I suspect I may be in the same boat. In my late 20's-early 30's, I would get hives every time I took a hot shower, but that was so different. These were big welts, all over my torso, front and back. Nobody every figured out why and they mysteriously went away. Now, 15 years later, this pops up and is possibly also related to heat and/or sweat. Have any of you seen an endocrinologist and had a thorough work-up? My derm thinks that's going to be my next step if this week's blood/urine tests don't show anything abnormal. Also, (just venting here), I find it discouraging how outdated the research is considering how many people this affects (compared to the 70's) and how uncomfortable it can make us. I still have half my life ahead of me and may have to deal with this for all of it? Someone please study this further!

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I have a call in to an endocrinologist – she's supposed to be the best in town, so I have to wait a little while to get in. I'll keep you posted.

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I have a friend who is an endocrinologist. He suggested my husband take drenamin for adrenal gland health. Haven’t started yet, but bought it. Unfortunately, it doesn’t seem the cilantro is helping him, but we still make a smoothie daily. The only treatment that has brought him success was the high doses of vitamin A. It almost completely left and he’s got hundreds of bumps. But, when it was time to end (dangerous at those doses for too long) they all came back. I’ll keep you posted on the drenamin.

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@kimass1

I had a biopsy and Grover's was found but I have additional Hives like and blistering rashes that popped up at the same time. I am trying to figure out what is triggering them or IF it's just associated with the Grover's … I just don't know and neither do any Doctors to this point. Since taking cilantro, the "typical" Grover's rash has gone, but the other rashes remain.

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FYI—been off cilantro smoothies for 11 days. After 7 months I decided to see where I stood with Grover’s. So far, so good. Working out, running and back to my normal routine. Don’t want Grover’s to control my life. Will keep y’all in the loop.

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Very good news!!!! If it is a heavy metal detox as the internet reports, perhaps years of heavy metal buildup have been purged. I was so involved with gardening projects I worked past my mid morning cut off and came in at noon at 99 degrees. So far so good, but still afraid to quit cilantro daily, although I skip it about once a week.

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@frogger

FYI—been off cilantro smoothies for 11 days. After 7 months I decided to see where I stood with Grover’s. So far, so good. Working out, running and back to my normal routine. Don’t want Grover’s to control my life. Will keep y’all in the loop.

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@frogger I am skipping my smoothies occasionally and yet, I have become addicted to the cilantro helping my digestive system. I also use less cilantro in each smoothie.

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Yes I liked my morning routine and cilantro was great for digestion. But will try to move on. Cilantro was a godsend.

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I wonder how many have used tanning beds in the past?

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@jbd3

I wonder how many have used tanning beds in the past?

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@jbd3 Never for me. However, I did have a pool and got tan. I don't think there is a correlation.

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@jbd3

I wonder how many have used tanning beds in the past?

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There's a reported correlation between sun damage and GD. Never used a tanning bed, but lived at the ocean and always in the sun. I'm 70 and the only sunscreen we had growing up was zinc oxide we put on our noses and a shirt when we realized we were fried. Typical cycle beginning in late spring- deep sunburn, peel, another sunburn, peel, sunburn and peel and after that the skin just managed it without significant burning and no more peeling until fall when beach weather cooled down we went back to school.

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@gardeningjunkie

There's a reported correlation between sun damage and GD. Never used a tanning bed, but lived at the ocean and always in the sun. I'm 70 and the only sunscreen we had growing up was zinc oxide we put on our noses and a shirt when we realized we were fried. Typical cycle beginning in late spring- deep sunburn, peel, another sunburn, peel, sunburn and peel and after that the skin just managed it without significant burning and no more peeling until fall when beach weather cooled down we went back to school.

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@gardeningjiunkie I am surprised you did not have skin cancer with that cycle of burns, peels and repeats. Wow! I guess you are fortunate in that regard.

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I have used them but don't think there is a correlation. I have never really burned, and was not a sun worshiper.

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re: the sun…. i have found the time I spend at the beach (2 week family vacation) leads to much less itching as well as less rash. I don't lay out under the sun too much but just being outside getting more UV rays seems to help. Derm said its not much different than going thru the light treatments that seem to work with Grovers a bit.

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@mariannj

@gardeningjiunkie I am surprised you did not have skin cancer with that cycle of burns, peels and repeats. Wow! I guess you are fortunate in that regard.

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Yes very lucky, got my father's side with skin not prone to cancer but no one in my family ever had eczema that I know of. My father was as maniacal about gardening as me and the rest of my family and worked outside, shirtless, no hat, no sunglasses until other health issues slowed him down in his early 80's. I remember him being concerned about his first basal cancer on his nose at age 79. My husband growing up at the beach and having a pool has had melanoma twice, first time at age 26, several hundred areas treated for various types of skin cancers, but had red hair/freckles when younger with thin skin. He goes to the dermatologist twice a year and gets burned, frozen, Mohs surgery, he's had Blue Light (worthless and very painful), not counting his melanoma surgeries. Yet he has never had eczema and is outdoor 5 days a week with his hobbies. He does wear sunscreen now, but it can only protect so much.

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@seth971

re: the sun…. i have found the time I spend at the beach (2 week family vacation) leads to much less itching as well as less rash. I don't lay out under the sun too much but just being outside getting more UV rays seems to help. Derm said its not much different than going thru the light treatments that seem to work with Grovers a bit.

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When I first got GD I tried laying in private area on my deck where I could get sun all over. It hurt, probably because of my torso rash being active and my first breakout of 1 year was the worst. Actually everything hurt, even cool water pressure but any form of heat really hurt. Still I tried for about 15 minutes a day and saw no improvement. Gave up. It may help others and I have heard it often helps with other forms of eczema, maybe it kills bacteria. Since on the cilantro routine I now enjoy a warm shower and getting hot and sweaty doesn't hurt. I'm taking advantage of my new freedom.

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