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

Interesting about the salt. I imagine it would be antibacterial and possibly drying? Glad it got yoru mind off the GD itch. I have never heard of a salt cave or this treatment, sounds pretty wild! But why not? I would try it.
Peanuts contain mold, so I am not allowed because of yeast issues which raise inflammation. Also antibiotics raise yeast levels and raise inflammation, so when my derm wanted me to go on doxy for rosacea I avoided it and stuck with topicals that did the trick. Internal antibiotics never helped with GD, but I have used Clindamycin, a topical antibiotic. I never did show infection. Many nuts are heavy in metals and on this site there was an interesting article about mercury (a liquid metal) being a cause of GD and of Parkinson's. I have so tried to give up nuts (I had the hair test showing nut allergies and I had blood test which showed 6 metal allergies) and gave up my almonds for a week but am breaking down again and snacked on them yesterday and today. Maybe this is also part of the reason I improved this week?
I have resisted the Facebook group as I blog on this site and the Inspire site and only so many hours in the day for free time, but like you others praise it. If my improvement stalls or fails I will consider blogging on it because I am always searching for inspiration and ideas. This Mayo site has been amazingly helpful, yes the cilantro stopped working, but it stopped my last outbreak so I had 14 months free of GD. I really forgot what the itching and pain felt like.

Hello again, I just read the post about the salt cave and your response. I am writing you because you seem to be extremely knowledgeable about these issues. I think I noticed that at some point you stopped doing the cilantro because it stopped working. I have been drinking cilantro smoothies for about a month now with no real effects that I can point to. I drink them with the hope that over time they will have a cumulative effect. To your knowledge is there a point at which you should notice a difference or does one just continue to hope that eventually they will work their magic ? Very little other than Motrin and cortisone creams has very much success with me. I do the light room and witch hazel as well. As I'm sure you know it is unbelievably frustrating. I do have some days better than others but on the whole I just scratch and suffer through it. I am going to Bali for a month in March and hopr that the sun and salt water give me some relief. I realize that any real cure is more complicated than just getting rid of the itch. Just praying for a cure. Many thanks.

So sorry the cilantro isn't helping. From my reading only about 50% were helped and for me it worked magically for 8 months. Salt water is anti bacterial so could help with scabs, but when broken out sun is painful on my skin and I avoid it. Also heat is painful. Plus sitting or laying leaning on my back is extremely painful, so an airplane ride would be miserable leaning forward or trying to lay on my side. I found I preferred to stand instead of sitting if possible. Fortunately my sides have been clear to lay down on my sides. I never scratch, even when itching or else the result is extreme itching afterwards, plus broken skin that won't heal.
I am allergic to cortisone.
I mentioned the amazing relief I was getting with the px Hydroxyzine HCL 25 mg. Best itching relief I have found, yet my 1 month old recurring breakout is waning already I believe from the WH. Yet WH is not helping you. I also think the histamine in the Hydroxyzine is helping calm my inflammation.
I wonder if nothing is helping because you are having your initial breakout. My initial breakout lasted 1 year. It covered a larger area, all of the upper front and back torso compared to subsequent ones. Sides clear.
I am hoping for your sake once you tough this initial breakout your subsequent recurrences will have less severe symptoms.

I was a little in to my 2nd month before I noticed any change. a few more before it was completely gone! Try to stick with it. I am hopeful you will find relief.

I asked my dermatologist yesterday about the shingles vaccine triggering GD. His answer was, "Yes it can initiate of activate GD". After you mentioned getting GD after a shingles vaccine I thought and figured out that my latest break out happened 3 days after I got my first Shinglix, the adult shingles, vaccine. Since this rash was limited to my back torso, an area not as common for Shingles and also the rash was not at the injection site I hadn't made that correlation. I also mentioned that my outbreak was rapid and severe, I even had plaques of grouped papuales about 1 1/2 inch clustering on my back within 2 weeks. Very itching. These plaques were not typical of my previous GD outbreaks. My dermatologist is Johathan Bellew, D.O. who is a physician for the Mohave Skin and Cancer Center of excellence in Arizona.

Not surprised at all to find out about the Shingrix vaccine. I'm no doctor, but there was no doubt in my mind that my GD was triggered by it. Presently, very little is really effective, as I have mentioned. I have some days better than others, but boy, when it hits hard, its brutal. I will continue the cilantro, just to err on the side of hope that it will eventually work. Thanks so much for your input.

Thanks for your response. Yes, I will continue the cilantro, if for no other reason than I mix it in with a lot of fruit, yogurt, and honey. How bad can that be ?

I was diagnosed with GD after biopsy last Feb 1. In April, with full approval from my dermatologist, I got first of Shingrix shots. Later I got second shot. Neither affected my GD. Just kept taking my cilantro smoothies.

I took my first Shingrix injection the day I started cilantro and noticed no regressive effect. I wish we could offer more clarity and a more clear cause-effect relationship. Perhaps correlation resides in the subtypes of Grovers. Hard to know.

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.