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

Hi there.....I will certainly stay in touch with you. Suffering is all I can say about the "itch". I will get some CeraVe....and give it a try. Do you also have an itchy scalp? I use a different product for my head and have made myself wash my hair more infrequently. Yikes....this is tough stuff.

May you be free, safe, and protected from inner and outer harm.
Chris

No, not an itchy scalp. I have something called Grover's Disease which involves itchy patches of red skin eruptions, usually on the front or back of the upper torso. No known cause or cure. Thanks for the encouraging words. Right back at you!

Hello all, I'm new to this community but wanted to join because my mom suffered from this disease about two years ago. There were times when the itching and pain were so excruciating, she felt as though she may not live another year. It was a traumatizing time for her, and for me as I worried so much for the health of my mom. After a harrowing many months spent seeking medical support and finding no doctors who had any answers, she finally found Dr. Brook Brouha (San Diego) who ordered Xeljanz for her. She has been taking it ever since, twice a day. She is in doing so much better, living her life, happy and healthy. Every single day I thank God for that, so I thought I'd share it here and anywhere else that it might be of help to others who are suffering! Please message me if you have any questions about it. Sending you my best wishes and support.

Thanks for the info. Glad your mom is doing better. Just a note to all the sufferers out there. I have had GD for over three years now. I did the Cilantro smoothies for about 2 1/2 years with pretty good results. About 6 months ago, I switched over to the liquid extract. During that time my itching stopped almost completely. I continued to do the liquid 2 times a day. Well, guess what? About a week ago, a new outbreak. Not terrible but no fun. I guess my point is, it ain't over 'till it's over, but it's never over. I can only hope remission for all, and that at some point, big pharma will take this insidious condition seriously.

Nodgabnoj- like you after after 2 1/2 years without any new GD activity I started up again several months ago. I was beginning to think GD was a thing of the past for me. Yet beginning under beasts and front torso, then my lower back torso I couldn't escape the reality that GD is truely transcient and chronic for me too. It has not been as overwhelming as my outbreaks were years ago which covered all upper and lower front and back torso including the back of my neck with intense itching and pain I began the cilantro smoothies in earnest, after being off them for 2 years with only occasional smoothies, about every 3 or 4 months. It's taken about a month to notice any reduction in papuale creation and itching, fortunetly this week I've seen and felt a dramatic improvement and just hoping it is not a temporary pause.

All of us search for products to relieve the itching and pain, my pain was as great as the itching. I have tried it all, prescription and over the counter product recommended or suggested and the only thing that worked for me was capsician. I did go ahead and order capsaician, a chile pepper topical 2 weeks ago because of itching. My original brand of capsaician, Flanax changed the formula and now contains Phenoxyethanol, one of the least allergic preservatives, yet because of my allergies to all preservaties I can't use this brand now. I did find a new brand, Rugby, Capsaicin Cream, 0.025% which is free of preservatives and much less expense. I have bought other Rugby products and was satisfied. Yet since my itch began lessoning recently I haven't had the need to try it. Capsaician was the only topical that worked to give me temporary relief from the itching, lasting about 20-30 minutes. I would apply before bed, it does burn/sting upon application of the rashed up skin for about 15 seconds and surprisingly the burn is a comfort from the 24/7 itch and tissue pain. Then after those few seconds the burn is gone, and the skin nerves are confused and the pain is blocked about 20 minutes which is long enought to get comfortable in bed and fall asleep.

When I say I;m back on the cilantro smoothie- I've changed and no longer put into my daily smoothie with wild blueberries, banana, bovine collagen powder, raw egg and almond milk. Now, after I make my delicious smoothie, then while the blender is empty and still dirty I put in my 1/2 bunch of fresh or frozen cilantro stems and leaves and about 1/3 cup of water and blend/liquify. I chug this green liquid, get it over with and then proceed to enjoy my delicious breakfast smoothie.

I never tried the cilantro smoothies, but I did use the liquid cilantro drops from Herb Pharm very faithfully for several months. My GD never went completely away, but it did calm down to a large extent. I thought to myself, this cilantro stuff is WORKING, so I kept it up for several more months, but I got no further improvement. I finally stopped taking cilantro altogether and my GD has not flared up with any massive new outbreaks, but I just get single sores occasionally popping up here and there and they could be anywhere on my body from my toes to my neck. I have a lot of science classes in my background, but that was long ago, and I am certainly no scientist now, but my best guess is that how much the cilantro helps each particular person is dependent on what caused the Grover's to emerge in the first place, and that cause could vary from person to person. In my case, I think it might have been way too much sun exposure of many years. For others it could have been exposure to certain chemicals, the Shingrix vaccine, or any number of other things.
At any rate, I'm very sorry to hear about @nodgabnoj and @gardeningjunkie suffering setbacks. I'm still using the CeraVe Itch Relief Moisturizing Cream for my own itching, but I will eventually give that capsaicin cream by Rugby a shot. Thanks and good luck to all!

Thanks. Both the liquid and herb itself seem to work for most people. I do continue to use it even if my GD is calm. Better safe than sorry. Good luck to you as well.

Greetings all. It's been a while since I posted so here's a recap. I've had Grover's Disease for 2+ years and I've been trying a lot of diet and gastrointestinal remedies without much luck. I previously tried daily cilantro smoothies and didn't see a major change but I decided to give it another try and for a few months longer than my last try. I'm 10 days in and my Grover's looks worse. Has anyone seen something similar or is the commonly observed process a gradual progression to clearer skin?

Many have experienced frustration with lotions and concerns about side effects from steroid creams. My dermatologist prescribed a steroid for breakthroughs and recommended Sarna (2% menthol) for daily management. They didn't help. I've found that lotions with a high percentage of menthol can be very helpful. I started using Biofreeze (4%). Currently I'm using a generic "Ben Gay" knock off. It has 10% menthol and 30% salicylic acid. Smells horrible and stings a bit but it stops the itch quickly for 6 to 10 hours. Some may be concerned about the icy hot sensation, worrying that heat might make things worse. But menthol does not lower or raise the temperature of the body. It only sends messages to the brain of cold and hot sensations, fooling it and distracting it from the itch sensation. Works for me.

This cream works well for me, and very importantly, it doesn't STINK like Sarna. It is made by CeraVe, but they have many lotions and creams. Make sure you order the CeraVe "Itch Relief Moisturizing Cream". if you want to give it a try. No steroids and no menthol. Here's a link to their website describing this particular CeraVe product, but I buy mine on Amazon.
https://www.cerave.com/skincare/moisturizers/itch-relief-moisturizing-cream