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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@gardeningjunkie

I just checked out the site recommended t kg7382. I feel the dermnetnz. org site, New Zealand Dermatology site has more complete info and the photos when diagnosing are very beneficial. I am always surprised that each info sites states it is more rare in women because most the bloggers about GD are women, yet perhaps that because women are often more proactive in searching for answers to health issues. The problem in getting research grants for treatments of the various forms of eczema is that this disease doesn't kill us, yet when symptoms are severe we may wish we were dead.

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Yes, the NZ site is the one my derm recommends and uses. I started there 🙂 I think the explanation was also good on the rare disease org site too. I have read all the articles on Pub Med but really haven’t found anything overly helpful. https://www.ncbi.nlm.nih.gov/m/pubmed/?term=(Transient%5BTitle%5D+AND+Acantholytic%5BTitle%5D+AND+Dermatosis%5BTitle%5D)+AND+hasabstract%5Btext%5D

But if you like reading research articles, they do have Several good case studies. Typical the big pharmaceutical companies will fund research, since there is not likely much to gain for them on a rare skin condition, I wouldn’t expect to see any big scale studies soon. People sharing successes is more likely to be fruitful. I appreciate what you and the others share!! It’s helpful.

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We have to count ourselves lucky that our GD rash can be hidden. I am now up to 3 forms of eczema and the only outbreak I ever had that showed was Perioral eczema which is a rash around the mouth. Yet, there are treatments which worked for me within weeks of the correct diagnosis. I even self diagnosed myself because of dermnetnz, org having so much info of types of eczema. My derm had been treating it as ACD and these treatments actually were feeding the Perioral; the steroid makes it more active. Having a visible rash is a humbling experience and if nothing else we learn sympathy for others dealing with this problem.
I know GD is a miserable disease and for most it is chronic. It is an autoimmune disease and if you have one you are likely to develop other autoimmune diseases. Yet jpearo life is precious. If you can block the pain with a good TV show or book or another hobby you enjoy it does help. Still when the breakout is severe I couldn't lay on my back in a bed to read or back in a chair, only lay on my side. I did a lot of standing. Also you have the hope that better days are around the corner and like me you will have months of normal skin. Having survived leukemia I already completed my bucket list years ago and now am joyously happy everyday I feel great and don't waste a minute. It's tough for you because you are young and I didn't get it until I was 66.
You don't have Allergic Contact Dermatitis, ACD, like I have which limits grooming products, but still you don't need to stress your skin. Order some Grandma's Bar Soap for face and body on Amazon. Now it's a Mayo Skinsafe product. It's just 2 ingredients, very moisturizing. Lye and lard. Yes lye doesn't sound safe, but during the soap building process, just like our ancestors did for the ages, the lye is converted into glycerin. The lard is moisturizing and the glycerin is not only moisturizing but allows some skin penetration. Also never sleep on a mattress or pillow with memory foam. Regular polyurethane foam is ok. Memory foam is processed with chemicals and elements from rubber and these element off gas though our weakened skin barrier on our torso causing raised histamines in many, me for one. Also make sure your sheets and towels are 100% cotton, also true of your shirts. Blended materials are processed with rubber chemicals. Yes these a baby steps, but can keep you hopeful.

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@jpearo

The thing that freaks me out is I keep thinking I might have leukemia or something. I don’t have symptoms of it and I’m a super bad hypochondriac so I’ve had tons of blood labs run. I’ve always prided myself on my physique and now I won’t even look in the mirror. Drs aren’t concerned because the condition isn’t dangerous. It is unsightly and uncomfortable. I’m just glad it stops at my neck. This whole situation sucks.

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@jpearo Based on the research articles dating back to the late 70s, yes there have been cases where someone has GD and other diseases such as renal failure and cancer. Per the research articles I have read, they have not established a causal link in the cases. GD is often misdiagnosed with other skin conditions. The best thing to do is be dilegent on follow up treatment/care, the doctors should be ruling out all other health issues. With medical professionals, I would recommend sharing all of your concerns/symptoms etc. something seemingly minor could be important for them to get the correct diagnosis. I’m a nurse and have worked both in acute care as well as home care, and getting the correct diagnosis and treatment requires knowing all the pieces of the puzzle. 🙂

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@kg7382

@jpearo Based on the research articles dating back to the late 70s, yes there have been cases where someone has GD and other diseases such as renal failure and cancer. Per the research articles I have read, they have not established a causal link in the cases. GD is often misdiagnosed with other skin conditions. The best thing to do is be dilegent on follow up treatment/care, the doctors should be ruling out all other health issues. With medical professionals, I would recommend sharing all of your concerns/symptoms etc. something seemingly minor could be important for them to get the correct diagnosis. I’m a nurse and have worked both in acute care as well as home care, and getting the correct diagnosis and treatment requires knowing all the pieces of the puzzle. 🙂

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That’s what I read too. My dr doesn’t seem concerned. I think I might just request some more blood tests so I can stop stressing. It seems that most cases are coincidental and that medication and therapies for the cancer might be responsible. Thank you. I can be a little intense as I do suffer from severe GAD and health anxiety. I feel like I’m completely losing it at this point.

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@gardeningjunkie

We have to count ourselves lucky that our GD rash can be hidden. I am now up to 3 forms of eczema and the only outbreak I ever had that showed was Perioral eczema which is a rash around the mouth. Yet, there are treatments which worked for me within weeks of the correct diagnosis. I even self diagnosed myself because of dermnetnz, org having so much info of types of eczema. My derm had been treating it as ACD and these treatments actually were feeding the Perioral; the steroid makes it more active. Having a visible rash is a humbling experience and if nothing else we learn sympathy for others dealing with this problem.
I know GD is a miserable disease and for most it is chronic. It is an autoimmune disease and if you have one you are likely to develop other autoimmune diseases. Yet jpearo life is precious. If you can block the pain with a good TV show or book or another hobby you enjoy it does help. Still when the breakout is severe I couldn't lay on my back in a bed to read or back in a chair, only lay on my side. I did a lot of standing. Also you have the hope that better days are around the corner and like me you will have months of normal skin. Having survived leukemia I already completed my bucket list years ago and now am joyously happy everyday I feel great and don't waste a minute. It's tough for you because you are young and I didn't get it until I was 66.
You don't have Allergic Contact Dermatitis, ACD, like I have which limits grooming products, but still you don't need to stress your skin. Order some Grandma's Bar Soap for face and body on Amazon. Now it's a Mayo Skinsafe product. It's just 2 ingredients, very moisturizing. Lye and lard. Yes lye doesn't sound safe, but during the soap building process, just like our ancestors did for the ages, the lye is converted into glycerin. The lard is moisturizing and the glycerin is not only moisturizing but allows some skin penetration. Also never sleep on a mattress or pillow with memory foam. Regular polyurethane foam is ok. Memory foam is processed with chemicals and elements from rubber and these element off gas though our weakened skin barrier on our torso causing raised histamines in many, me for one. Also make sure your sheets and towels are 100% cotton, also true of your shirts. Blended materials are processed with rubber chemicals. Yes these a baby steps, but can keep you hopeful.

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Thank you so much for the advice. It is nice to talk to people who get how bad this sucks. Other people just shrug it off and tell me to chill out that it’s just a rash.

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I don't understand why they call it transient acantholytic dermatosis when for me there's nothing transient about it. Mine is in the chronic stage and has been for 5 or more years and is in no transient form whatsoever. However, the intensity of it comes and goes.

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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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