Grover’s Disease

This is my first time posting. I am a 69 year old woman. I have had Grovers Disease for two and a half years. It began a few days after I had my second Moderna vaccine. The rash is on my back only and barely visible. BTW, I had a punch biopsy to confirm that I do, in fact, have Grover’s. My case is different as my skin burns and is hot to the touch. I have seen an excellent dermatologist and neurologist. I have had extensive blood work done and three MRI’s on my back. Bloodwork is good and nothing on the MRI’s. I tried the cilantro smoothies daily for a year to no avail. My pain is the worst late afternoon and into evening. I need to lay on a ColPac mat that I keep in my freezer when I watch TV at night. I have been getting dupixent shots twice a month for three months. I use calcipotriene cream. I have clobetasol spray, however my doctor says it is not good to use often. The calcipotriene cream is the only thing that soothes the pain. My neurologist put me on gambepentin which did nothing, so I stopped. Three weeks ago I had a nerve block and that did not help, but made the burn even worse. If anyone has any suggestions for me, I would appreciate any and all help.

Wow!! I actually thought of giving up wine but , maybe not😩

This is my first time posting. I am a 69 year old woman. I have had Grovers Disease for two and a half years. It began a few days after I had my second Moderna vaccine. The rash is on my back only and barely visible. BTW, I had a punch biopsy to confirm that I do, in fact, have Grover’s. My case is different as my skin burns and is hot to the touch. I have seen an excellent dermatologist and neurologist. I have had extensive blood work done and three MRI’s on my back. Bloodwork is good and nothing on the MRI’s. I tried the cilantro smoothies daily for a year to no avail. My pain is the worst late afternoon and into evening. I need to lay on a ColPac mat that I keep in my freezer when I watch TV at night. I have been getting dupixent shots twice a month for three months. I use calcipotriene cream. I have clobetasol spray, however my doctor says it is not good to use often. The calcipotriene cream is the only thing that soothes the pain. My neurologist put me on gambepentin which did nothing, so I stopped. Three weeks ago I had a nerve block and that did not help, but made the burn even worse. If anyone has any suggestions for me, I would appreciate any and all help.

Hello Sharfar,
I’m so sorry to hear that you have joined this undesirable unique club. I too am new to the GD group. I was diagnosed with a biopsy in Dec 2022 by a dermatologist. Not all who have GD experience the same symptoms or severity, but mine began as a simple small itching rash on my back Nov 14, 2022. Over the course of the next 2 months it spread from my back, then to my sides, abdomen, elbows and arms, then down my back and buttocks to the back of my thighs and knees. At times it was unbearable.
The best way I could describe it was like poison ivy, oak, scabies, shingles, and a bad sunburn with blisters, and biting fire ants all wrapped up together with a bow on top. At times, especially at night it was impossible to sleep because the burning pain and itch would be so bad. Sometimes I’d be lucky if I got 3 hours of sleep a night. It was pure torture to say the least. I tried just about everything and have a shoe box of every type of anti itch med on the market you can think of that one could get from Amazon. I will say this, the prednisone that was prescribed by the doctor really didn’t help much and it got worse once I was off it. The creams and lotions the dermatologist suggested and I paid a lot of money for , at times seemed to block my pores and get me more overheated and sweaty. I will say temporarily Zinc oxide worked when there was redness and burning, and Gold Bond Powder I would use at night. Occasionally during the day for a brief amount of time Sarnia helped to cool my burning skin. At night cold compresses marginally helped to cool my skin when I was trying to sleep. After trying to read all that I could from the GD forums and Facebook, I started eating handfuls of cilantro in Mid December, twice daily. I didn’t care how bad it tasted. This past month I also started taking 2 capsules a day of the cilantro. I stopped taking hot baths which I truely used to love and now miss, but the red rash, and burning painful itching has subsided, as well as the blisters. I still have some skin lesions and occasionally itch, but nothing to compare with what it was like a month or two ago. Not sure if it has run its course for this cycle or if some of the things I have been doing is helping. I also read from someone that they used hand sanitizer and two weeks ago I started using it with aloe vera lathering it on my abdomen and back. One of the biggest game changers for me was recently starting to take Hydroxyzine HCL 25mg prescribed at urgent care. I was told recently it could help me get some sleep and reduce the itching. So I started taking it and this past week and for the first time in 4 months I got more than 6 hours of sleep allowing my body to start to get the restorative rest it needed to start healing itself. I also tried each day to walk 5 miles and drink plenty of water and cut out any alcohol and sweets. For the first time in my life I asked my family to pray for me, because the pain had been so unbearable. I must say, I do believe in the power of prayer, because my symptoms have subsided.
In responding to your point about having an MRI, I too had a number of CT scans and MRIs just prior to my outbreak of GD. I believe my outbreak of GD was triggered possibly by 2 very traumatic injuries sustained in early Sept and then later in Oct. The pain from the two accidents was so painful it was like being in labor and for the first time in my life I went to the ER to have it diagnosed. I had a total of more than a dozen diagnostic tests done over the next 3 months to determine the extent of the injury which included CT Scans, X rays, and MRI. One of the CT scans on my abdomen was with contrast 2 weeks before the onset of the GD. Finally, they were able to diagnose a herniated disk and pinched nerves, that initially rendered me unable to move , walk, stand, sleep, or sit without excruciating pain. A month later I was given an epidural which made all the difference in the world. But prior to that, not wanting to take any narcotics for the pain, I resorted to taking excessive hot baths and using heating pads along with ice packs to help alleviate the pain. Earlier in my life as a long distance runner I had excessive sun damage to my skin. From the literature I have read I think I was a good candidate for GD with my excessive sun exposure earlier in my life. The excessive pain and stress from 2 severe injuries within 2 months of each other, I feel may have compromised my immune system and may have rendered me more vulnerable. And my exposure to excessive heat to alleviate my pain and the exposure of so many diagnostic tests like the CT and MRI and X rays in such a short period of time may have just set it off.
I have to say I am reluctant to ever have anymore diagnostic tests that may be CT MRI or X ray in nature for fear it might set off the unbearable painful itching cycle again. I’m thinking I may for the rest of my life incorporate the cilantro as a part of my daily meal and a few of the other items I discussed above. I pray it never comes back in a vengeance like it did the past 3 months. I pray your symptoms will be minor in relation to mine. Take good care.

This is a horrible disease. My skin burns almost everywhere and nothing is helping. Or if it helps (like diaper rash cream) it later stops helping. I’m in misery and have other conditions and triggers to manage. I’ve dealt with chronic pain and migraines my whole life and this has put me over the edge into a hell realm. It hurts to lay down, it hurts to lean back on a seat so I drive without leaning back, my mask to protect me from germs burns my face, my clothing burns and irritates my body, I can feel every seam and tag on my clothing and even cotton is irritating. This is utter hell. It’s ruined my life. I pay the price every time I exercise which I love doing but immediately upon breaking a sweat my skin tingles that tell take sign. I have yet to try the powder but I’ve spent a fortune in money I don’t have on lotions potions and creams and cilantro smoothies are not curing me yet.

So sorry that you have Grover’s this is a great group for support and education. Have you read about cilantro yet? It helped me so much. I’m 90% healed. It’s been such a relief. I’m happy to share my protocol if you are interested