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

You are doing everything I can think of to help. Just don't give up on your anti inflammation diet for at least 3 months. As seniors we all should have mercury in our systems so that's not unusual. I think of it like cigarettes, all smokers have side effects from smoking but only some get lung cancer. Some of us with GD are more sensitive to heavy metals. Even a small amount of mercury could be our cause.
I never had my amalgam filling removed. I read that old fillings, mine are 45 years old or more, have release all the exposed metals and that removal actually releases the trapped mercury into us, so backed off on that procedure. I occasionally had sushi. I have all my life and still do eat large ocean fish but have back and eat more fresh water fish. I love mussels, which are supposed to be the highest in mercury, yet only eat a few times a year now. I've cut out most shellfish except shrimp. I hope my occasional cilantro smoothie helps with that.

Re- vaccines, my own experience, fwiw: I started having itchy skin problems on my face about 3 years ago (diagnosed as rosacea), before I got the Shingrix vaccine. The problems gradually progressed downward after I got the vaccine, down my neck and onto my shoulders, manifesting differently on different types of skin – I can't be sure whether there was a connection among the different kinds of itchy disorders, or with the vaccine. Once it reached my shoulders, it was there diagnosed as GD and confirmed with a punch biopsy.

I have to note that most people seem to develop GD after they've gotten older, which happens to be when the vaccine is recommended; so although I'm open to the possibility that there's a connection, it also seems to me that the timing of the two could be coincidental.

That said... I had the chickenpox vaccine when I was an infant and have the scar in my left shoulder, and I too eventually noticed that the scar itched just like a GD bump – in fact, for quite I while, I felt an itchy, small bump there and assumed it WAS a GD bump, until finally I actually looked at it and realized there was no perceptible GD bump there or near it. So that got me wondering about some kind of viral connection, and I asked about it here; but you're the first one I've seen so far to also mention an itchy vaccine scar.

Also fwiw, I have not been able to confirm any cilantro-based benefit in my case.

I've still got the GD – it progressed slowly down my body and my efforts to control it now cover my arms as well as my chest and back– but it's not as bad. Seems to be slightly helped by cortisone cream, antibiotic cream, and/or adalpene gel. At the moment I'm suffering more from what I believe to be atopic dermatitis, mainly in my armpits and inner elbows – again, however, this seemed to be part of the gradual progression down my body.

Fwiw, my thought would be that it might make as much or more sense to write the FDA. (I tend not to be very optimistic about asking megacorps to investigate potential negative effects of their own products.)

You are making a good point about writing the FDA, but we should contact Shingrix makers and tell them we are writing the FDA to get them to pay attention to the problem.

It's interesting you mention your scarred areas becoming sensitive, I have notice that with my eczema compromised areas even though not symptomatic with eczema my skin is not normal and more sensitive.
My husband's derm recommended using Niacin to help his skin heal faster after a procedure. Niacin does cause redness and tingling and must be started up in small doses and increased. This redness is called a Niacin flush which usually is from the neck up.
I tried a quarter dose and was miserable for over an hour. This flush should last under 30 minutes. It also covered my entire body, head to foot, yet never flushed in areas that a bathing suit would have covered. My dormant GD areas burned and itched for over an hour. Other areas of my body where I used to get my ACD issues were on fire. I was concerned. I tried again a few more times yet I never adjusted to it and was miserable, It was like being in a massive GD ourbreak all over again. I quit. I though it might trigger my GD.
I know we have permanent skin changes with eczema which the eczema flushing causes our skin to over react

Anyone you write to will refer you to the website: https://vaers.hhs.gov which is designed for that very purpose. I have reported my Shingrix - GD symptoms there.

Yes, we should, absolutely. I think if we did it as a group it would be more effective.

@fairlypatient37 @jiffy890 @dkdarcik I'd like to extend my welcome to Mayo Clinic Connect, a place to give and get support.

You all have information to share and questions that the group may be able to answer.

I'm happy to see you received responses from members.

@fairlypatient37 I'm sorry to hear about your reaction. It's probably a smart move to notify the manufacturer of your reaction. @dkdarcik You may want to do the same, if you think the vaccine caused a reaction/flareup.

@jiffy890 Goof for you on the anti-inflammation diet. Do you have a resource that you use regarding the diet. I know gut health is important for so many reasons and with our current processed diets out gut health really suffers.

P.S. Welcome back @help4meandu

@erikas I have several naturopaths that are helping me with my diet while I'm simultaneously heavily researching on my own, reading peer reviewed publications, and doing some experimenting with n=1. I have benefitted tremendously from the "at home" testing market and used services from several providers to identify my gut issues and developed protocols with experts to hopefully address them. I am hopeful that this leads to some success treating my Grover's Disease.

Others besides myself I'm sure would like to know what products you have used from the "at home" testing market. I do know 1 have 3 types of eczema and have learned what contacts to avoid and ways to treat if symptomatic. I have had different types of professional allergy testing for eczema skin symptom's, but no professional gut testing.
I did try an inexpensive home "hair follicle" gut test in which you send off a few strands of hair and the report is mailed back , basically I would be left with nothing to eat other than pears, a few vegetables, hormone free chicken (not even turkey) and white rice- even brown rice showed an allergy. It listed pages and pages of allergic food for me. I found the results hard to believe, especially since, even when free of eczema symptom's, like I have have been for over a year, I eat foods that I showed an allergy to and have no skin issues or gut issues other than constipation which I need to treat with daily with fiber supplements.
So a reputable home gut testing company recommendation would be appreciated.