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

I trim about an inch off the bottom and then used the rest. I would wash and let dry, place ends in a glass and cover with a plastic bag with holes in the top in the refrigerator and it lasts for over 5 days, changing the water every few days. For frozen divide up and wrap in paper towels, then a plastic bag. For freezing, divide in bunches using 1/2 bunch portions. Making the smoothie with frozen, I would break the 1/2 bunch in half, by hand, it snaps and place in blender with other ingredients. I was one of the many that cilantro worked for. I first who learned about cilantro as a heavy metal detox on this site as I had been blogging here for about a year then in mid Feb 2019 Kimass1 shared her information about cilantro helping with GD and I am very grateful for her posting. I still follow this this blog occasionally and have never read where any other form of cilantro other then fresh or frozen benefited anyone. Some mention being too lazy to bother with it preferring capsules or drops, I figure they are the lucky ones because they must not have been suffering as much as I used to. Have I missed something, is there one testimonial on this site where the drops or capsules helped anyone?
Follow up now after being clear for over 1 1/2 years- I just was outside gardening in 90% degree weather, dripping with sweat when I came in and sure I was flushed and hot but my skin doesn't even sting from the sweat. I'm no longer concerned about triggering activity. Even after my visual symptom's abated it took over a year for my skin to become less sensitive to touch or sweat. I know we have lost the collagen connections in our torso skin cells damaged by GD so I have continued taking collagen protein in a smoothie without cilantro and also I take silica daily. If it comes back I will definitely go to the trouble of making the fresh or frozen cilantro smoothies to begin this heavy metal detox again. I do eat deep water fish every few weeks and shellfish- all loaded with heavy metals. For those questioning if it is worth the effort, it works for about 50% of us that do this. Within a month I began to believe I was starting to go into remission, it still took months for this to happen, so don't give up too soon. Sadly it doesn't work for all of us. We do have commonality's like sun exposure and other factors but GD must have different root causes because the same treatment doesn't work for us. Yet we have no other option. I have never read where anyone was ever put in remission by any other treatment. Most us, like me had similar break out patterns. The first outbreak the longest and most severe with itching and pain and for me it covered my entire upper front torso and back torso and then dormant period, then another active period with the front not as active. Still it was miserable. For me it was 1 year initially, then 6 months of activity and then 6 months of remission, yet always a hold over of inactive scabs and always sensitivity and the feeling that little tiny bumps were under my back torso skin if pressed upon during the dormant period.
Best wishes to all of us who are fighting this battle.

We all have to learn what works for us. I have read where Sarna helped some with itching and bought it, but it was a waste of money for me. No itching benefit at all.

Myself as well. Sarna did nothing for me. I have been doing daily smoothies for over a year now. My GD seemed to disappear a couple of months ago, but has recently returned. Very, very frustrating. What interests me, is how quickly some people respond to Cilantro. It took me a long time before it had any effect and now, despite drinking them for over a year, I'm itching again. They are now advertising the shingles shot on tv. Naturally there is no mention of the possibility of Grovers.

I am so glad to hear that you are still GD free. Best to you !!

I had GD for about 3-4 years before trying the cilantro. Most of us who were blogging on Inspire and tried cilantro had GD for a few years or more. I am now wondering if it works better on those of us that went through a few cycles of activity and remission. You were new to GD, so I want you to be hopeful. Perhaps give up the cilantro, suffer through an active cycle and wait until you go into your remission cycle and then wait until it becomes active again. Before trying it again. Most with GD have a regular pattern of dormancy and activity. As I mentioned my first outbreak lasted a year, then I had 6 months off and 6 months active. You don't know your pattern yet. None of us are exactly the same.
I'm very frustrated for you. I hear Facebook has an active GD site, perhaps some bogger has new information. Also earthclinic.com has a GD blogging site, that's the site on which Kimass1 learned about cilantro. Keep searching.

I just received my order of Sarna a few days ago and I too have found it to be a disappointment so far. It does help a little in some places, but the areas that are EXTREMELY itchy, where I need results from it the most, seem to easily shrug it off. Another substance that I saw others saying helped or stopped their itching was zinc oxide. That stuff did absolutely ZIP for me except make my skin feel oily and sticky. Yuk!
Also, thanks for the detailed info on your cilantro smoothies. When I mentioned being too lazy to go through all that trouble, I was partly serious and partly just employing self-deprecating humor. I decided to try the concentrated and organic drops first since as you say, the cilantro smoothies don't always work, and even if they do, some people have a relapse anyway. That would frustrate me to no end to have gone to all that fuss and bother to either achieve nothing or only a temporary fix. The cilantro drops are so easy, I decided to give them a shot just hoping I would get lucky. I haven't read but a handful of the pages on this forum yet, so I have only scraped the surface of what people have tried and found ineffective, but so far, I have seen that some found the cilantro capsules to be worthless, but I haven't yet seen anyone mentioning the concentrated drops of cilantro. Are you sure others have already tried that and failed?
Please understand that I am not questioning your honesty. I just want all the info I can gather and I want to be able to clearly interpret that info. Thanks so much for your input.

Humor often doesn't translate in our writing and I often get in trouble with my writings. Yet trust me I am not and never was upset by you, I simply wanted to save you time and and not waste it with an ineffective treatment. I Only post now trying to help others. At present I am eczema free of all 3 of my types but that has been a 20 year journey. I understand your misery right now. I understand wanting to get around the fresh or frozen cilantro bother. I couldn't accept that it had to be fresh. Only later did a blogger recommend freezing it for convenience because that worked for her. I did use frozen about half the time after that. I didn't like the taste of the smoothies at first, but one does get used to them and finds them refreshing. Like you I also tried to avoid doing that using tablets and who knows gel could work. Do your homework and go back to mid Feb 2019 on this site and follow the tales of real folks who are experimenting with cilantro, desperate and hoping. It seemed to helped about 50% of us. Go to the earthclinic forum Kimass1 learned about cilantro on this site. She posts the website page in mid Feb also. I read the stories of fellow GD bloggers on that site, wow, one man had it solid for 6 years without a remission period and it worked for him.
Search the internet and read up on cilantro as a heavy metal detox. There are other natural herbs which help too. You can have your blood chelated to remove heavy metals, but this is a medical treatment requiring doctors and would not be covered by insurance as heavy metals is not an accepted cause of GD. Cilantro, while it takes longer, is cheaper. I do not know how long I will stay in remission, yet it hasn't returned since I stopped with daily smoothies. I make one every few months now.

Thanks for all the info which I will definitely pursue when I have more time. Very helpful!
I've had GD with no remissions whatsoever for many years, so many that I really can't recall the number, but probably about 15-20. Recently it has gone totally out of control spreading to many parts of my body which were never effected before. Something must have triggered this radical result, but I have no idea what. I am willing to try almost anything, but I'm resigned to the fact that my odds of success are not good. Congrats on your remission!

Have you ever considered multiple forms of eczema. I have Allergic Contact Dermatitis, ACD, as well as GD. You can't test for ACD if your back is broken out. ACD can be all over your body. Research 5 Day Extended Patch Test for ACD if interested. They may be able to locate test patches on a clear area other then the back, but I don't know.

I have never looked into any other possibilities after being diagnosed with Grover's at a dermatologist's office years ago when I first broke out. Oddly enough, he said to me, "I know exactly what that is because I have it myself!"
Thanks for the suggestions. I have an appointment with my primary care doc in a few weeks and I will ask her for a referral to a dermatologist to see if further testing can be done. Stay well!