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

I have had GD for 5 years now and for whatever reason the severity's lessening. I'm not saying it is not itchy and painful when it reoccurs, just less; take heart and have hope. The first year was a 24 hour challenge for a full year. Like most know I couldn't even lay on my back in bed or lean back in chair or car. I not only had itching but extreme sensitivity and pain. I know it will return and then really go for it when symptom free,
For me the only negative side effect of the 1/2 bunch of cilantro in a smoothly daily for about 9 months was darkening of age showing up on related sun spots on my face. I had been drinking my smoothie even symptom free and then when blasting recurrence in Dec which derm decided was a reaction to my adult shingles vaccines. I gave it up. Just about the time I noticed the darkening this plaque like rash appeared so figured the cilantro had stopped helping. Google it- excess cilantro can cause skin darkening. I chose the smoothie as a way to ingest it as it was easy to mix that with fruit and yogurt in a blender and take in such a large volume, no way could I eat that much on a salad or straight. Cilantro doesn't' work for all. I was improved after a few weeks of drinking it, it may not be helping you, but unless you get the skin darkening it may have no negative side effects.
We are also boaters and yes have had to opt out many times. Not only the heat is an issue, but the bouncing putting pressure and friction on my back is painful and aggravating, I am much worse off afterwards. Friction seems as much of a trigger as any of the others.
I'm hoping you stay encouraged and believe that time will be on your side. I am not believing a cure will be found, but you will have better days ahead as the symptoms die down for a period of time and you will treasure those times.

Thanks very much for the detailed and prompt reply - Most appreciated.

Excessive vitamin A (the cilantro) “could” cause many side effects. One I’m concerned with is hairloss which is another side effect of too much L-lysine as well. Do you know of any of these side effects of this in this site?

My research shows lysine is used to treat hair loss, not that it causes hair loss.

We are all experimenting with ourselves and wanted to share something new for me. I started taking collagen power a few weeks ago. With GD we have lost the collagen with holds our cells together and I am curious if others have tried it. It is also suppose to help with joints,skin, hair and nails. Two kinds- bovine and marine, each with a few differences in the benefits. The bovine is cheap and the marine is fairly expensive. Some say best to take both. I hope this also hopes me with my joints (the bovine has this benefit not the marine). I have noticed no negative side effects or change yet. I always have my normal less than a dozen random papuales, small scabs, not itchy, on my lower back even in remission.

Thank you for sharing your experiences. It’s the best info I’ve gotten since being diagnosed. You said it perfectly about experimenting with ourselves. It definitely makes sense with the protein. I’m just a little scaredy-cat with the supplements and I’m even more scared of prescribed medication. I’ve been doing the cilantro, keeping to my diet to keep inflammation at bay. I’ll look into the types of L-lysine supplements. Thank you again.

Need to correct error, I mentioned collagen power, correct to collagen powder.

I was just diagnosed with Grovers disease after suffering for a couple of years with painful itchy eruptions. I have 5 cats and was convinced it was a flea infestation. I have had exterminator spray 3 times, treated cats, trashed rugs and sofa and diligently washing bedding and clothing frequently. Yet still have itchy rash and bite like bumps all over. Feeling desperate and now using strong steroid creams. I have tried aloe gel, calamine lotion, take Benadryl every night or I can’t sleep. What causes this? Can stress trigger? I am losing weight and hair. Of course the current Coronavirus epidemic isn’t helping. Thank you for any advice you can share.

to treat the itching try Sarna lotion. Available at drug stores and some supermarkets, What worked for me to lessen the grovers effect was photo light therapy. Ask your Dermo for a referral. Its a small room where your 're exposed to the special light for 30 seconds up to 3 or 4 minutes . It worked for me after 6 months of 2 to 3 times a week.

I have had GD now for about 9 months and this site is the best place to learn how to manage it. I read it every day. Many of the suggestions posted here have really helped me. No one is sure what triggers the disease. I thought the shingles vaccine prompted mine, but there is no way of knowing. If you scroll back to some of the earlier posts you will see that a number of people find relief with smoothies made with a handful of frozen cilantro. Wiping down the affected areas with Witch Hazel is also helpful. The most effective treatment for me was oral steroids. You can take them for 7 days only, in decreasing numbers, as they can affect your kidneys. The other post today mentioned the light room. I did it for a number of weeks with no real results, but I can't continue for obvious reasons, so maybe it will help after I go back to it. Somebody mentioned the value of Lysine. I just received my bottle. I strongly advise you scroll back to the beginning of these blogs and read them. You will gain a wealth of knowledge. One thing you must understand is, what works for one person may not work for another and, that they all take time to work at all. It is a very frustrating disease and you must be patient, if you can, in attempting to deal with it. Stay hopeful.