Grover's Disease: What works to help find relief?

I am a 36 year old male and I’ve had a rash that suddenly appeared on my chest and back. I’ve seen 3 different Drs and two of them suspect Grover’s disease. I had two biopsies done that came back as a drug rash but that can’t be it because I’m not on anything. I’m so frustrated. It has started coming down my arms now. I feel an ugly beast. The rash doesn’t respond to medicine. I’ve started looking up Grover’s disease and found an association with blood cancers. I am so freaked out. I just want this thing gone. I was just prescribed tetracycline so hopefully that does something. I’ve had all kinds of tests and scans so I shouldn’t be worried but I am. I can’t believe how much this has just completely effected me. The rash came on so suddenly. Is there anyone that can give me advice. I’ve also read that people have this for a long time too.

I do feel your pain and like you my biopsy wasn't positive for Grover's, yet I obviously have it. I meet 4 of the 5 commonalities (including a blood cancer, leukemia which I no longer have). Good info and photos on dermnetnz.org which lists not only the more common forms of eczema, like my ACD, but rare forms like Grover's. . My derm told me for the test to show a positive the breakout stage must be at the right stage and my breakout was waning when biopsied.
My first break out (one year) was the worst, for the next 2 years about 6 months on and 6 months off, but each break out has been less severe. Now 6 months clear I am developing minor breakout on abdomen and started applying the Calciptreine Cream on all torso areas after showering and nothing has progressed in weeks. My pain had been so terrible with the initial torso, front and back, breakout I couldn't lean back in a chair. Forced to drive a car hunched over the steering wheel. Fortunately my sides have never broken out so I can position myself in bed and have trained myself not to move. Druing the day the pain is the worst and we all know about itching more obvious at night as our histamines are elevated in the evenings.
Steroids did nothing, also I tested positive to an allergy, I have (ACD) to one of the 5 classes of steroids, which carries over to 2 others, so that leaves me only 2 classes I can use.
The most helpful treatment I have found is Calcipotreine Cream, a vitamin D topical. Also if the papuales break and scab infection is possible and I use Clindamycin Phosphate, a topical anti-bacterial fluid applies topically.
Heat and sweat and friction must be avoided, a challenge, but try to limit outdoor activities to mornings.
The bottom line seems to be it needs to run it's course. The collagen keeping our cells tight has weakened and our skin no longer protects us from iritants. Even now, without a back torso breakout can feel very tiny bumps sub dermal. These are the places just waiting to break out again.
Fortunetly my first break out was just a year as I have corresponding with one person whose first break out was 6 years.
Keep researching, kg7382 just suggested a new info site and will go to that to learn more. Always hopeful.

I do feel your pain and like you my biopsy wasn't positive for Grover's, yet I obviously have it. I meet 4 of the 5 commonalities (including a blood cancer, leukemia which I no longer have). Good info and photos on dermnetnz.org which lists not only the more common forms of eczema, like my ACD, but rare forms like Grover's. . My derm told me for the test to show a positive the breakout stage must be at the right stage and my breakout was waning when biopsied.
My first break out (one year) was the worst, for the next 2 years about 6 months on and 6 months off, but each break out has been less severe. Now 6 months clear I am developing minor breakout on abdomen and started applying the Calciptreine Cream on all torso areas after showering and nothing has progressed in weeks. My pain had been so terrible with the initial torso, front and back, breakout I couldn't lean back in a chair. Forced to drive a car hunched over the steering wheel. Fortunately my sides have never broken out so I can position myself in bed and have trained myself not to move. Druing the day the pain is the worst and we all know about itching more obvious at night as our histamines are elevated in the evenings.
Steroids did nothing, also I tested positive to an allergy, I have (ACD) to one of the 5 classes of steroids, which carries over to 2 others, so that leaves me only 2 classes I can use.
The most helpful treatment I have found is Calcipotreine Cream, a vitamin D topical. Also if the papuales break and scab infection is possible and I use Clindamycin Phosphate, a topical anti-bacterial fluid applies topically.
Heat and sweat and friction must be avoided, a challenge, but try to limit outdoor activities to mornings.
The bottom line seems to be it needs to run it's course. The collagen keeping our cells tight has weakened and our skin no longer protects us from iritants. Even now, without a back torso breakout can feel very tiny bumps sub dermal. These are the places just waiting to break out again.
Fortunetly my first break out was just a year as I have corresponding with one person whose first break out was 6 years.
Keep researching, kg7382 just suggested a new info site and will go to that to learn more. Always hopeful.

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.

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.

@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. 🙂

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.