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

Agree I will try that first

I looked Lysine and hair loss up and actually there is no association of Lysine excess with hair loss. Yet a deficiency of Lysine causes hair loss The only excess supplements to cause hair loss were: biotin, ribolavin, folate and B12. Guess I stay on my full dose.

Even with my GD remission I still only feel good in loose clothing. It might be the weight of the sheets and blankets trigger your itching going to bet, but our histamine levels are significantly higher in the evening for everyone. Google it. Also for me when I was symptomatic I was distracted with daily activities, but as soon as I lay down in my bed the itching skin was my full focus. I did use Flanax Liniment, a topical capsacian cream, it is hot chilies. It would burn going on and burn for a few minutes more. I used a long plastic cooking spoon to apply to middle of back. My pride kept me from asking my husband because my skin was so ugly all rashed up. Surprisingly the burn of the chilies felt better than the itch. The burn subsides and I could get about 30 minutes with enough itch reduction to fall asleep. Must wash hands after application so not to rub your eyes or they will burn.

I dont remember what I read about the lysine. It was enough to scare me. Which doesn’t take much with regards to supplements and medications. Daily I take biotin 5mg, omega 3 fatty acids 600 mg, of course calcium and vitamin d bc of my age and 200 mg of magnesium bc I get headaches. I use free and clear shampoo bc anything else gives my scalp a burning reaction. Once a month I use a dandruff shampoo with Pyrithione zinc bc of the dermatitis. Sometimes I get a reaction (Burning) sometimes I don’t. It might be bc sometimes the dermatitis might be extra sensitive all I know is I can’t use the steroid Fluocinonide topical solution bc either I have become sensitized to it or allergic but it’s what the Derm wants me to use which I don’t. Also prescribed is ketoconazole 2% shampoo (generic for nizol) which I haven’t used yet bc I’m afraid of a reaction. I never used to be afraid of anything I used until I became sensitive to things now it’s almost a phobia. That’s why I was nervous about the lysine bc of one article it was also related to the reading of getting too much vitamin A. (The cilantro) I was taking sumatriptan for migraines and that’s when I noticed the hair thinning. Now I only use that if the headache is so bad it makes me forget about the fear of hairloss but even that medication is ok as long as it is not excessive same for biotin and of course lysine and vitamin A. My hair sheds in the summer. It’s like clock work when it starts getting sunny. And again like clockwork when it’s fall it sheds less. It’s normal shedding and I’m assuming my age 51 it’s Normal for it to thin not in my 20’s anymore. But it does break easily around the hairline. I get frustrated dealing with all this. You would think I would be relieved it’s not Grover’s which I am but it’s the same things to deal with the itch and the bumps as Folliculitis.

My journey was thru Dermatologists usual road -Corticosteroid cream, Antihistamine - 25mg at night and 180 mg daytime etc.
Have you looked at a website http://www.groversdiseasetrearment.com where there is a sub-folder on the home page shown as "Invention" which purports to have a cream to cure GD.
I recently received a sample, unbranded and am dubious re using, reason being their address is Chicago and the U.S. customs certificate is stamped Miami and mailed to Australia from there. (???)

You are dealing with challenging health issues. Do doctors have any idea what causes your headaches. My father used to get migraines in his 40's (I do wonder how much this was caused by my mother) but he said after age 55 he didn't get them anymore. Maybe yours will wane. I think I am the only one that reacts to Free and Clear Shampoo, within a week my scalp is itching. As I mentioned there are 5 classes of steroids. I tested allergic to one. So you may have become allergic to Fluocinonide, but there are 4 other classes. If you want to use a steroid research what class Fluocinonide is in and avoid those and check out the other 4 classes and ask your derm which one of those you can substitute.

I have had Grovers disease for over four years, diagnosed for 1 1/2. None of the patent medicine was effective enough. Then I learned that the rash is triggered by eating foods containing SULFITES. They are naturally occurring in several commonly eaten foods ie. grapes (vinegar, wine etc,), peppers, onions, garlic, soy, peanuts, cabbage, brussel sprouts, molasses, mushrooms. Sulfites are added to many packaged foods and sprayed on much American produce for preserving a fresh look. SOLUTION: Buy organic produce and meats, grow your own, use rice vinegar. Knowing this has GREATLY REDUCED my occurances of the Grover's rash. Also a very effective topical cream is available on Amazon called "Eczur Cream" by Elimia. It costs $23 +/- for a very small plastic jar. But you don't need much and it works, especially after showering with a low chemical soap.Now I go weeks at a time with no itchy bumps!

Wow - I had no idea sulfites are naturally occurring in certain foods. I have been clear for awhile now, but am starting to feel itching and a single, crazy itchy bump on my midriff area. My diet is very high in mushrooms, brussel sprouts and asparagus. I will definitely start eliminating and see what happens. Thanks for that information!

This is my 1st day on this group. I developed Grover's 11/2/20 New unwashed Dark Green Tee Shirt sleeping under electric blanket. Treated with Steroid Cream. Five weeks later got fissures on finger tips right hand. (never told correct procedure. Back of hands itch if skin temperature hits 90F. Hands look like 90 year old man. Made the mistake of not going to U of Penn Dermatology Dept. Going this week to see what can be done. I and 77 and was in great health. Low blood pressure, Low sugar ride bike 5 miles each day. Work in my garage on 21 dodge and 38 pontiac. Was a happy camper till this dreaded disease got me. Thanks to feedback from fellow Grovies.

I read that post and almost commented but hoped others would know by now not to fall for these scams Those of us that have had eczema for years have seen these scams come and go. In fact about 6 years ago a man kept promoting his cream that cured eczema and many of us reported this and got him blocked. There is no cure for eczema. It can go into remission, but this autoimmune disease is incurable. When I first got eczema I didn't understand that.
I've had people requesting to be my friend, which I accepted at first even though they weren't regular posters and they talk you into sending them your email address and then hustle you to sign up for their miracle product which only can be sold with a monthly automatic payment from your bank account. Believe me they are convincing and when suffering we become desperate. They tell you stories about their child that was cured by their product. Now I never give my real name or addresses.
Only purchase grooming products from companies with a good reputation and all active and inactive ingredients are listed. If they say it is a secret formula those are warning flags- do not buy it. I would be afraid to even put on the free sample which is probably coming from China.
I've been targeted by sellers reporting their melaleuca oil, emu oil, secret cure formula and so on could cure me. If that was the case eczema would be a thing of the past.
If a group of regular bloggers reported success with a treatment and I could check out the ingredient list to see if it was safe for me I would try it and have tried many recommendations I felt were safe. But a stranger with no history selling an unknown product?