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

The light therapy works for some, not for others, as is the case for all these GD remedies. It did nothing for me. Again, the same with the smoothies. It varies with the individual but generally worth the wait, if need be.

I'm also interested in people who have tried light therapy. My Doc wants me to try it. I'm reluctant only because of the daily commitment for many months. My guess is that those for whom it was successful are no longer reading this forum but if you are, please let us know.

Did anyone try an hyperbaric chamber or ice cold tub ??
I know the hyperbaric is expensive but the heck with the money at this point

I have had GD almost three years. Purchase a 6' high UV light fixture for home use ( approx. $250.00 copay from Kaiser. Tried treatments last year with no relief. Started again the first of the year. Three sessions a week; not up to one minute exposure.
No relief yet. It seems to increase symptoms. Will continue thru May and will keep you posted.

I have shared this earlier but I want to underscore that I have found significant relief sleeping in a hammock and using an open chair to watch tv. As I thought hard about my symptoms I realized that they got worse in the evening after I had been in a leather armchair and in the morning after I got up from bed. I also noticed that when I was out on my boat using a mesh type outdoor chair to watch TV and sleeping in a hammock I always feel better after at least two nights. For the past two weeks I have been sleeping in my hammock on the boat, which I am blessed to have in the water by my house. I have recently purchased a Mayan hammock which uses very fine mesh cotton chord and will soon install it in a bedroom. I would say that the improvement is approximately 50%. It is significant, but doesn't eliminate the symptoms. My doctor agrees that this is a sound solution and said I was the first patient he knew who was willing to try it. There is a lot to learn about sleeping in a hammock and if anyone is interested I can give you advice and point you to countless resources on youtube. I will give only one tip, right now, and that is you do not want a hammock with spreader bars. The key to sleeping in a hammock is to lie diagonally. When I install it in my bedroom I will send a picture.

I have tried the dried cilantro as tea. It was not effective.

hilly and others on the subject of light therapy- I didn't try light therapy per se, but I had privacy on my deck where I could lay out in the nude and sunbathed.
The direct sunlight didn't feel good. I used to love the feeling. It hurt and burned immediately. I tried to tolerate it adding more time, up to 10 minutes. After a week I simply gave up. The sunlight activated the papuales causing pain. I saw no improvement, the reverse actually.
I think the sunlight may be good to kill bacteria, but my papuales were never infected. I used to splash with Witch Hazel after showering and Witch Hazel is a reportedly anti-bacterial.

I would like your input on my situation. As you know, I have been taking the Cilantro oil twice a day for the last year or so and it appeared to keep my GD at bay. About three weeks ago, I had a new outbreak, my first in a long time. I was talking with my gf about the re occurrence and she suggested, just as an experiment, to stop taking the oil and see what happens. I did, and nothing changed. The itching didn't get any worse, and no new outbreaks either. So now what? Forget the oil all together or start taking it again just as a precaution? I know there is no harm in taking it, but why put something else in my body that doesn't seem to have any effect. I understand that there is no clear answer, but I trust your judgement. Many thanks.

There are so many variables.
I drank the blended fresh or frozen cilantro for about 6 months. It only took about 3 months to know for sure it was dormant, but it took months for the masses of scabs to fall off, at that time the scabs were not active, painful or itchy. If I scratched them off, the scab would return. They simply wouldn't heal. Yet the itching and pain was gone. Just sensitivity was present.
Other then the rash I got after the Shingrex vaccinne my skin was inactive for about 2 years then around mid Dec 21 I knew it was starting. I got the thousand of tiny, tiny non irrupted bumps under my upper back torso skin and a strange familiar sensation, but not yet itchy or painful, just a tingling. I did get a few random active GD papuales which stung around my lower torsos, only about 5 or 6.
I started up on the fresh or frozen cilantro again for about a month, daily. After the month all traces gone. So I this was not a full blown activation of the GD.
Like all of us our reaction to cilantro varies. Perhaps you should do as the doctor suggests and go off the oil monitoring your symtoms?
I do want to point out, at first I tried the capsule and oil form for a few weeks before I decided to try the fresh or frozen. I noticed no improvement until I took the fresh and after about 3 months of fresh also added the convenience of fresh frozen a few days a week.
You do have my sympathies, I'm so sorry that it's becoming active again for you. After a few clear years I thought I had beat it, now I accept there is no cure. That's why the Transcient Acantholytic Dermatosis- transcient meaning it comes and goes.
I did find splashing with Witch Hazel to be refreshing, even though it stung the broken papuales. It's supposed to be anti-bacterial, but I can't say it made a difference helping it go into remission. No prescription ever made any difference. I do know from blood testing I have multiple metal allergies, so perhaps with cilantro chelating my blood thus reducing the metals in my body my system is less inflamed.
Heavy metals are also related to Alzheimer's and Parkinson's diseases. Google it, many sites also consider heavy metals tied into GD. So using herbs to remove these heavy metals can have added benefits other then just for GD.

Thanks for your input. I did the fresh-frozen smoothies for about two years, every day. The thought of going back to them makes me gag. Not something I look forward to.