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

Please help! I am at what appears to be the end of a SEVERE Grover’s Disease flare and am scared to do anything wrong for fear that the debilitating symptoms will return. I have been avoiding clothing on the area (as much as possible), heat, and sun for about a week and have been using Triamcinolone Acetonide Cream 0.1% twice a day for about 3 days. But I don’t want to use it anymore if I don’t have to. The rash looks much better and the burning, itching, fiberglass-like pain is almost gone. I actually slept last night which was a first. There is still a mild underlying itch and some bumps present. Is it too early to stop the steroid cream? When can I resume my normal life? I live in Florida, it is hard to avoid heat. I enjoy being outdoors; gardening, biking, swimming in my pool, and getting in the hot tub after a long active day, but I am scared to death that the horrible symptoms will return. How do we know when it’s safe to go back to normal life? Thank you so much for any advice/input. I am so grateful for this site!

I’m a 59 year-old male who has had Grover’s disease for 20 years. Here’s what worked for me. It’s a cream called Miracle Oil - Tea Tree Creme. I used it twice a day for two weeks on my stomach and then once in the morning thereafter. The red itchy bumps are 90% gone. The key ingredients are the tea tree oil and hemp seed oil, I believe they kill the demodex mites which is linked to Grover’s. The cream is available without a prescription. It’s a great moisturizer too. Give it a try, my GD started getting better almost immediately.

I'm a bit confused. Why would you stop taking cilantro because you were getting another GD outbreak? I thought that was the whole point of taking it in the first place. So at what point do you think the cilantro should be taken ?

This is kind of a suggestion to all those with sleeping problems, take it for what it's worth. Having been in the restaurant business for my whole adult life, I have sleep issues. I generally don't fall asleep before 3-30 AM, and would probably lie awake for another hour if I didn't start taking trazedone. For years, I mistakenly drank wine and bourbon to sedate me, and I actually slept very well. About 4 years ago I stopped the alcohol. Best decision ever, BUT, I couldn't fall asleep. I tried everything, but nothing worked until the trazedone. For awhile I would take it with CD oil. Boy did I sleep deeply. I realize that what works for one person may not work for another, and I understand that many people out there are resistant to taking more drugs, for good reason. For myself, as someone who loves his sleep, the benefits of trazedone far out weigh the minor risks involved. Now with GD, I don't think I would ever fall asleep without it.

Hi @43219876x, welcome to Connect! Grover's disease or Transient Acantholytic Dermatosis, is a rare condition but I found that some standard therapies include mild topical steroids, antihistamines, and some oral drugs. You can read more about this here: http://rarediseases.org/rare-diseases/grovers-disease/

I'm also tagging @jbmakos who has reached out about Grover's in the past; I hope that he will share his experience with you. Have you tried any oral treatments yet?

This is kind of a suggestion to all those with sleeping problems, take it for what it's worth. Having been in the restaurant business for my whole adult life, I have sleep issues. I generally don't fall asleep before 3-30 AM, and would probably lie awake for another hour if I didn't start taking trazedone. For years, I mistakenly drank wine and bourbon to sedate me, and I actually slept very well. About 4 years ago I stopped the alcohol. Best decision ever, BUT, I couldn't fall asleep. I tried everything, but nothing worked until the trazedone. For awhile I would take it with CD oil. Boy did I sleep deeply. I realize that what works for one person may not work for another, and I understand that many people out there are resistant to taking more drugs, for good reason. For myself, as someone who loves his sleep, the benefits of trazedone far out weigh the minor risks involved. Now with GD, I don't think I would ever fall asleep without it.

Dear Ali,

You seem to be well connected here at this site. May I reach out yo you about TAD to you since I can't find the link to upload an original thread. Where can I start a new thread for discussion here? Thank you.

Charles.

This is kind of a suggestion to all those with sleeping problems, take it for what it's worth. Having been in the restaurant business for my whole adult life, I have sleep issues. I generally don't fall asleep before 3-30 AM, and would probably lie awake for another hour if I didn't start taking trazedone. For years, I mistakenly drank wine and bourbon to sedate me, and I actually slept very well. About 4 years ago I stopped the alcohol. Best decision ever, BUT, I couldn't fall asleep. I tried everything, but nothing worked until the trazedone. For awhile I would take it with CD oil. Boy did I sleep deeply. I realize that what works for one person may not work for another, and I understand that many people out there are resistant to taking more drugs, for good reason. For myself, as someone who loves his sleep, the benefits of trazedone far out weigh the minor risks involved. Now with GD, I don't think I would ever fall asleep without it.

Trazodone is certainly the doctor's choice. Not addictive.Try taking it an hour, before bedtime. Initially, I felt knocked out, in the A.M., but then my body adjusted.