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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Does anyone have the spots that are like small waterblisters which pop very easily and then sting and feel prickly. It is not a typical itch. More like prickly and sore. Feels almost like a sunburn after they are popped.

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I did forget to mention that recently I had a positive Ana test. When further testing for specific autoimmune diseases; all of these tests were negative. Any thoughts?

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@packer2

I did forget to mention that recently I had a positive Ana test. When further testing for specific autoimmune diseases; all of these tests were negative. Any thoughts?

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Mine look like pimples and red bumps. They heal and I can see spots where they were. The problem is new ones just pop up after old ones clear.

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@packer2

I had a biopsy one year ago when I only had the red spots with no itching. It is now back with extreme itching. Any pressure applied to the areas produces a prickly sensation. Should have ask my doc for a second biopsy??

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I would get a second Dermo opinion.

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@packer2

I also have GD all over my torso and back. I have even had spots on my ams and Iegs. It is completely miserable.

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Welcome to the GD world. Do you have medications? Also, Sarna over the counter may reduce the itching.

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@jbmakos

Welcome to the GD world. Do you have medications? Also, Sarna over the counter may reduce the itching.

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I have been given two steroid creams and doxepin as an oral medication. Nothing seems to help.

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@packer2

I have been given two steroid creams and doxepin as an oral medication. Nothing seems to help.

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I’m actually trying tetracycline right now. It is starting to clear a little. I don’t really like it though because the pills make me a little dizzy. I’m sorry you are going through this.

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@packer2

I had a biopsy one year ago when I only had the red spots with no itching. It is now back with extreme itching. Any pressure applied to the areas produces a prickly sensation. Should have ask my doc for a second biopsy??

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Sounds familiar except I’ve been told for years that my itchy bumps were just a contact dermatitis. Wasn’t until I spent a spring in hot humid Hawaii then went to the hot dry SW for 3 weeks of hiking and finally landed in Colorado where my red bumps were profusely spread over my trunk and spreading to arms and legs. I was miserable! Once home I saw my dermatologist and she found a “newer” lesion that clearly showed Grover’s and not just inflamed cells. It’s been 9 months since the start of this extreme flare; after 3 months of phototherapy 2-3x/week and Triamcinolone dabbed on hot spots, along with Luke warm soda water soaks 2x/wk, no vigorous exercise and cold packs to the itching burning areas in the evening, I’m seeing light at the end of the tunnel. For me, I had to stop use of all commercial lotions and use straight up coconut oil to moisturize 2x/day. Messy but it’s the only product that does not burn. I also undertook a 30 day elimination type eating plan (Whole 30) to reduce systemic inflammation. I truly felt better doing this; and have noticed increase in “flares” as I’ve reintroduced the foods I’d eliminated. Seems as I get to higher dosing in my UVB phototherapy I’m having more “flares.” Has anyone else experienced this?

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@packer2

I have seen 2 dermatologists about this. I have just recently started phototherapy. Do you have the prickly sensation in areas that have no red spots? I have this sensation on my arms where there are very few spots.

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I experience the same. For me I find tiny almost microscopic pink itchy bumps which eventually fully erupt. If I catch them early with Triamcinolone ointment they resolve. Sometimes the phototherapy makes them fully erupt. Can’t win.

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@jpearo

I’m actually trying tetracycline right now. It is starting to clear a little. I don’t really like it though because the pills make me a little dizzy. I’m sorry you are going through this.

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I understand the need for bacterial control but Instead of an oral antibiotic which can kill your good bacteria that keeps yeast in check (over production of yeast increases inflammation in the body) have you tried a localized topical antibacterial which can be helpful if your pustules or papules have broken open? Clindamycin Phosphate or Metonidazol? Maybe use both to?

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@sharsharlee

Sounds familiar except I’ve been told for years that my itchy bumps were just a contact dermatitis. Wasn’t until I spent a spring in hot humid Hawaii then went to the hot dry SW for 3 weeks of hiking and finally landed in Colorado where my red bumps were profusely spread over my trunk and spreading to arms and legs. I was miserable! Once home I saw my dermatologist and she found a “newer” lesion that clearly showed Grover’s and not just inflamed cells. It’s been 9 months since the start of this extreme flare; after 3 months of phototherapy 2-3x/week and Triamcinolone dabbed on hot spots, along with Luke warm soda water soaks 2x/wk, no vigorous exercise and cold packs to the itching burning areas in the evening, I’m seeing light at the end of the tunnel. For me, I had to stop use of all commercial lotions and use straight up coconut oil to moisturize 2x/day. Messy but it’s the only product that does not burn. I also undertook a 30 day elimination type eating plan (Whole 30) to reduce systemic inflammation. I truly felt better doing this; and have noticed increase in “flares” as I’ve reintroduced the foods I’d eliminated. Seems as I get to higher dosing in my UVB phototherapy I’m having more “flares.” Has anyone else experienced this?

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Just because we have GD doesn't mean we don't have other forms of eczema; I have 3 types.Most of us with eczema, an autoimmune disease either have or will develop another autoimmune disease and will also add to our list of types of eczema. You mentioned giving up commercial lotions (which are a toxic soup of chemicals, preservatives, alcohols, fragrance and even natural ingredients we can be allergic to). I strongly recommend getting the 5 Day Extended Patch Test. Do you know coconut, a natural ingredient is a major offender and included in the patch kits for testing for a reason. I would have never guessed on my own what allergens I had. Like you for years derms assumed my torso rashes were part of my Allergic Contact Dermatitis issues not bothering to dig deeper. Google this exact test.

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I'm so glad I found your group I have had Grover's for over 7 months and have tried 12 different steroid creams and some made it worse and none have made it go away. Then dermatologist said to do UVB rays so I went to tanning booth I cover my face my bumps are mainly under my breasts. It helped a little. I was approved for a breast reduction to help with this but now my Plastic Surgeon is concerned about doing the procedure due to the rash is still there. I told her it is not a infectious or contagious. I can understand but she saw it when it was at its worse she said she wants to see it again in a week. I have been trying over the counter stuff but I appreciate the information on diet change here on the forum which I'm going to start doing. Does anyone know somebody that had Grovers and had a breast reduction done. I believe it would help my rash. Also the phy is afraid the scar would not heal with the rash there.

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