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

to Cindytxrunner and Locutus: All very interesting. I happen to be crazy for cilantro so I will look at these older posts and give all suggestions consideration. I see my derm on 7/30 to report on the alternating Clobetasol and Eucrisa creams, which have tamed down the major GD flare-up quite a bit over the past month. Prednisone for 15 days did the best--but it was never a long-term solution. Besides, I gained 6 pounds; I was hungry the whole time. Thank you for all your help. GD is a curse. We know it's uncurable.

To all who are experimenting with cilantro and other products to try to find a cure for GD: I'm 73 and was diagnosed in my early 40's. Thus, I have had quite a few dermatologists over the year look at and treat my GD. They all agree from their training GD is uncurable. With that is out of the way, you have convinced me to try either the cilantro smoothies or the cilantro oil. I will talk to my doctor about it on Friday to see if he's heard anything about it. There may not be much current clinical interest in GD right now but he seems to be as up to date as he can be on it. To repeat an earlier post from me, six UVA light TX did not work for me. It made it worse. The GD spread to my legs and started to spread to my back. I've only had it on my chest and trunk previously. I'm unhappy I have more of it now to deal with. Prednisone for 15 days dried up the blisters and stopped the itching completely--but it is not a drug I can stay on long-term. I was happy at how the GD responded to it, however; it was really just an experiment by my dermatologist. I'm happy to be a part of the support group and very much appreciate the new information I've gotten from all of you.

Yes, @stpchair, I think most of us on here who have had the disease for quite awhile realize there is no cure for Grover's, but we have found a few ways to make the symptoms less severe, or in some cases, go away completely.

I have been taking this product https://www.herb-pharm.com/product/cilantro/ (which I get on Amazon) since early June and the number of my sore and itchy spots has been greatly reduced and most of the old sores have faded to a light pink in color as opposed to them being red before.By no means has my disease gone away completely, but it has dramatically improved.
@cindytxrunner is taking the exact same drops, but so far as I know, we two are the only ones on this forum to currently be trying the drops route instead of the cilantro smoothies. I am definitely NOT trying to influence you to try the drops instead of the smoothies, but if you do decide to go this route, it would be a little bit more like a tiny scientific study if you were to use the same drops as @cindytxrunner and me. Far more people have gone the smoothie route, and @gardeningjunkie estimates that about 50% of those people have found some level of success with them. She in particular has had her Grover's go into complete remission!
Best of luck and please keep us posted on your situation.

You have nothing to loose trying cilantro. I have a cabinet full of expensive and useless products which were recommended by multiple dermatologists but they never suggested they would put me into remission, only help perhaps. There is no recognized treatment to put GD into remission. Not once was a tie in to heavy metals suggested or the benefit of naturally chelating your blood of metals by ingesting cilantro.
I believe all of us on this site would appreciate your feedback after talking to your derm about cilantro as a treatment for GD. Also mention the information on the internet about heavy metals as a precursor for diseases like Parkinson's, Alzheimer's and GD.
When GD was active I tried natural light exposure as I have a private place to sunbathe and it just plain hurt. I did it for a week and it always hurt and seemed to make it worse. Heat, pressure, friction, sweat and sunlight always hurt or made it worse when active. I would think the sunlight would be anti-bacterial for the papules, yet in my case my papuales never became pustules. They never got infected yet an antibacterial watery topical was prescribed and I applied that after every shower.
You have a severe outbreak with it going to your legs, in my case it was limited to front and back torso from hairline to the waist, yet it never appeared on other places, still I have read from others that it can happen.
You have been dealing with this for 30 years. Does it go into remission like it does for many of us? My first outbreak was a full year and the most extreme and then my pattern was 6 months of dormancy and then 6 months of activity.
Take heart with the cilantro. Kimass1 first read about cilantro on the earthclinic GD site. One man who went into remission had been dealing with a continually outbreak, never going into remission for 30 years like you. The fresh cilantro smoothies put it into remission. If you check out that site you might feel more comfortable with the cilantro experiment.

I have noticed in the last few days my grovers located on my hands / fingers is more dry vs blisters, I can't say if it is cilantro drops, vitamin A one capsule a day, or some Cera Ve lotion that contains collioidal oatmeal and safflower oil, but I will keep up all of them going and let you all know ...Hope everyone is doing better!!

I recently ordered and received one of the CeraVe products, specifically, the "Itch Relief Moisturizing Cream" formula.
For me, it is vastly superior to the Sarna lotion for providing some help with the occasional itching I still sometimes experience, and as an added bonus, it has almost no odor. Sarna has a TERRIBLE odor! YUK!

I agree about Sarna odor. I can’t tolerate especially when trying to sleep. Sleep remains elusive with this disease unless I take Benadryl but PCP warned against taking it.
I’m trying cilantro capsules from Swansons and seems to help somewhat. Still get random eruptions in strange areas top foot, upper thigh by hip as well as typical torso. Such a befuddling disease that is affecting my mental health as well.

CeraVe products are awesome ,,,this is the Eczema Relief oil, which relieve itching....I will never put steroid creams on again, damaging my skin

I have also started making cilantro pesto which is very good, if you like cilantro....

If you want to try something to help you sleep that doesn't involve taking an antihistamine like the diphenhydramine hcl which is in Benadryl, you might want to check out the three ingredients in this guy's Healthy Sleep Formula:
https://www.grc.com/health/sleep/healthy_sleep_formula.htm
However, this is a remedy for insomnia, not itching, so if you are taking the Benadryl for itching, this formula would not help you with that. Also, if for some reason you have decided against making the daily cilantro smoothies and are instead taking capsules, you might want to consider joining @cindytxrunner and me in our "clinical trial" of the cilantro drops from Herb Pharm. The capsules seem to have been a flop for people on here who have tried them, but that's just my general impression. @gardeningjunkie would probably have more detailed info on this subject.