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

I've struggled with Grover's for 2 years. It all seemed to start when I stayed at a very dirty airBnB. I liked to sleep with a pillow over my eyes, and when I woke in the morning, my eyebrows and eyelids itched like crazy, and things got worse from there. I developed rosacea on my face, and then the Grover's creeping steadily downward from there. I've read that demodex may be implicated in rosacea and Grover's. My doctor prescribed a host of medications and terminated some of them, usually with no discussion – dermatology practice seems chaotic in my city seems chaotic at best. Some meds were oil-based, and I've read that demodex feed on sebum, and my own experience was that oily creams and the like made the inflammation worse, so I've tended to just use the creams (although I think maybe petroleum-based oil is ok?) I've also read that part of the problem is that the skin reacts to the organisms' feces, and noticed that if I scrub itchy areas with a solution of witch hazel and alcohol, I get a beige-gray grime; and if any areas still itch after scrubbing and I go back over it, I get more grime off – in other words, the presence of the grime exacerbates the itching. This may just be because the skin is already irritated and is simply reacting to any kind of grime that may accumulate on it; but I've also started to wonder if there's a whole skin ecology involved; more about that below. Anyway, most of the meds I've tried haven't seemed to help much. The rash gets better and worse from time to time but has slowly and steadily spread from my shoulders down my chest, armpits, back, upper arms, and down to my wrists, in that order. Once an area's been colonized, the rash there never seems to go completely away. The initial sign of spreading is a fairly intense crawling feeling; then stinging as pink bumps pop out, then intense itching. I carefully resist scratching, or only scratch through clothing, but the bump seem easily inclined to turn into open sores and scab, although the scabs are small. My eyes are also itchier and blearier than before this all began; several times a day, I'll use a fingernail to gently scrape the crud from my eyelid edges. As for treatment, I've gradually developed a regimen that seems to help keep things bearable, although the itching woke me up in the middle of the night the other night; and if I neglect things, I'm quickly thrown back into torment. The regimen is: I scrub all areas with a solution of 2 parts witch hazel to one part 90% rubbing alcohol, trying to remove all grime; then a cortisone cream on particularly itchy areas; then slather on antibiotic cream – the latter really seems to help the healing, and this is one reason I wonder about the skin ecology – that if demodex are involved, maybe other kinds of bacteria also play a role, either in feeding them or simply in the inflammation. I do all that at least twice a day, morning and night, and it usually gives me at least 3 hours of relief from the itching; plus I also use Differin in certain areas to help things heal; and I also apply opthalmic ointment to my eyelid edges every night. And of course I wash my sheets, towels, and clothing two or three times more often than I used to, using tea tree oil in the wash and also in my shampoo and soap; and I only wear the softest cotton shirts, inside out since the seams feel torturously scratchy. If I do all this religiously, I can usually still function; but I estimate it's sucks up nearly 4 or 5 hours per day, and I still feel at least semi-tormented much of the time.

Have you gotten a biopsy and formally diagnosed as having Grover's Disease? It sounds more like you may have scabies rather than Grover's. There was a woman on the GD facebook page that had both Grover's AND scabies and was misdiagnosed as just having GD. You mentioned "organism's feces". Grover's Disease is not an "organism" to my knowledge the cause is still unknown. Have you been tested or treated for scabies?

Thanks for asking. Punch biopsy confirmed Grover's. I've read that demodex are suspected to have a role in both rosacea and Grover's. I don't know that I've been tested for scabies – would that have turned up in the punch biopsy?

I'm not sure about that. But worth asking your Dr.

I've struggled with Grover's for 2 years. It all seemed to start when I stayed at a very dirty airBnB. I liked to sleep with a pillow over my eyes, and when I woke in the morning, my eyebrows and eyelids itched like crazy, and things got worse from there. I developed rosacea on my face, and then the Grover's creeping steadily downward from there. I've read that demodex may be implicated in rosacea and Grover's. My doctor prescribed a host of medications and terminated some of them, usually with no discussion – dermatology practice seems chaotic in my city seems chaotic at best. Some meds were oil-based, and I've read that demodex feed on sebum, and my own experience was that oily creams and the like made the inflammation worse, so I've tended to just use the creams (although I think maybe petroleum-based oil is ok?) I've also read that part of the problem is that the skin reacts to the organisms' feces, and noticed that if I scrub itchy areas with a solution of witch hazel and alcohol, I get a beige-gray grime; and if any areas still itch after scrubbing and I go back over it, I get more grime off – in other words, the presence of the grime exacerbates the itching. This may just be because the skin is already irritated and is simply reacting to any kind of grime that may accumulate on it; but I've also started to wonder if there's a whole skin ecology involved; more about that below. Anyway, most of the meds I've tried haven't seemed to help much. The rash gets better and worse from time to time but has slowly and steadily spread from my shoulders down my chest, armpits, back, upper arms, and down to my wrists, in that order. Once an area's been colonized, the rash there never seems to go completely away. The initial sign of spreading is a fairly intense crawling feeling; then stinging as pink bumps pop out, then intense itching. I carefully resist scratching, or only scratch through clothing, but the bump seem easily inclined to turn into open sores and scab, although the scabs are small. My eyes are also itchier and blearier than before this all began; several times a day, I'll use a fingernail to gently scrape the crud from my eyelid edges. As for treatment, I've gradually developed a regimen that seems to help keep things bearable, although the itching woke me up in the middle of the night the other night; and if I neglect things, I'm quickly thrown back into torment. The regimen is: I scrub all areas with a solution of 2 parts witch hazel to one part 90% rubbing alcohol, trying to remove all grime; then a cortisone cream on particularly itchy areas; then slather on antibiotic cream – the latter really seems to help the healing, and this is one reason I wonder about the skin ecology – that if demodex are involved, maybe other kinds of bacteria also play a role, either in feeding them or simply in the inflammation. I do all that at least twice a day, morning and night, and it usually gives me at least 3 hours of relief from the itching; plus I also use Differin in certain areas to help things heal; and I also apply opthalmic ointment to my eyelid edges every night. And of course I wash my sheets, towels, and clothing two or three times more often than I used to, using tea tree oil in the wash and also in my shampoo and soap; and I only wear the softest cotton shirts, inside out since the seams feel torturously scratchy. If I do all this religiously, I can usually still function; but I estimate it's sucks up nearly 4 or 5 hours per day, and I still feel at least semi-tormented much of the time.

GD follow up. Maybe not GD symptom outbreak at all but reaction to Shingrex. Now 1 month after seriously bad upper back torso outbreak with large plaques of blisters, all plaques gone and itching gone. My GD outbreaks never had these large plaques, simply thousands of papuales; not grouped solid. Stopped cilantro, at beginning of outbreak used the Witch Hazel and then 2 weeks ago added the Hydroxyzine 25 mg twice daily. Unbelievable fast recovery. Normal pattern of GD recurrence is 6 months. Was this GD or a case of shingles. GD and Shingles have similarities. Derm said I had a 100% probability this outbreak was cause by the vaccine. I am not getting 2nd shot of Shingrex.