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?

You're right about being confused about the title of our Grover's Disease, GD, aka, Transient Acantholytic Dermatosis, TAD. We all know the dermatosis refers to skin disease. The Acantholytic refers to the loss of inter-cellular connections. Yet for most of us it's chronic and just like you I think the transient must refer to the repeated nature of the break outs. It seems once our cellular structure has changed permanent damage has been done. I know even during clear periods I always feel tiny bumps under my skin, much like the size of a grain of sand. Once the active stage start these bumps enlarge and you know the rest.

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@kg7382

Yep – the GD is all over my torso. 🙁 Increase concentration under where my bra hits.

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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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@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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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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@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 am so sorry. Mine just seems to stay. I would see a dermatologist though. When I touch spots I actually get that same prickly sensation. It is such a miserable experience.

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@jpearo

I am so sorry. Mine just seems to stay. I would see a dermatologist though. When I touch spots I actually get that same prickly sensation. It is such a miserable experience.

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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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@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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@packer2. My first onset had almost like a nerve pain – and was in spots where I couldn’t see any bumps. I thought it was shingles at first. My second flare up did not have that same sensation, but I did get a secondary yeast infection with my second bout. I thought I was going to scratch my skin off. After the yeast cleared up, it’s just bumps with less symptoms. They never go away completely and feel bumpy. I was just persistent in contacting my dermatologist as things changed, and he has been great. Anytime you have open skin, you are subject to secondary problems. Hope that helps!

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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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