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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@mroreo126

Why don't they just do a biopsy?

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Our postings may be confusing as we are discussing not only Grover's Disease, GD, but also other forms of eczema which overlap.Often ACD and Grover's minic each other. I was misdiagnosed for years as my doctors believed my torso rash was my already diagnosed ACD. I believe kimass1 is having testing for Allergic Contact Dermatitis, ACD, I'm not aware of biopsies that can identify allergen's for ACD. She also has GD. They can do a biopsy for GD, but even that for me was inconclusive as my breakout was not in the active stage.

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@kimass1

I’m scheduled to start my 4 day testing on the 26th I’ll keep you posted. In the meantime I have bought mattress cover and pad. Fingers crossed we get to the bottom of it! Thanks again for all your help. You are appreciated!

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I am so happy you are going ahead with the expensive ACD patch test. Please don't think you wasted your money if results are negative, at least now you will know to search in other directions, figuring ourselves out is a process of elimination. Glad you got the mattress cover and pads, your bed is the one place you spend the most hours per day in one location.

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@mroreo126

Why don't they just do a biopsy?

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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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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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@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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Have you looked into food testing for allergies? I wish I knew more about food testing My sister-in-law has an obvious flare up with hives after eating strawberries. I am convinced giving up processed sugar and severely limiting my gluten since Oct 18 has directly contributed to my internal skin issues calming down, as well as my female tissue area no longer burning and returning to normal healthy skin. I don't think I am allergic to processed sugar or gluten, it's that they breed yeast whose waste products elevate inflammation Could food trigger your hive like rashes? Based on another bloggers recommendation a few weeks ago I ordered a food allergy test kit on Groupon, it's only $35.00 and simple. Normal price is $135. At Groupon you register with site, get a code and send off your own hair sample. It's been weeks since I sent it off but a few days ago received confirmation they are testing it now. It checks for an assortment of food allergies like dairy, nuts and many more. I ordered the Silver Kit the middle priced one as it seemed thorough enough. After report is sent to me I'll report back if I think it's worth it. If you don't want to wait go to Groupon: Check My Body Health Food Sensitivity and Intolerance Test, offer expires Oct 17, 19.
If anyone knows of good food testing available with an MD let us know.

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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 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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