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

Sorry but I’ve been drinking cilantro smoothies since 2020 and have had Grover’s for the last two years. Cilantro smoothies do not work for everyone and it drives me crazy when people claim that it does or suggest that I still drink them. I still do drink them and no they do not help my GD

I found this site quite encouraging when I was in the GD battle trenches so I wanted to include my experience for others. Diagnosed by a dermatologist with GD about 15 years ago but it was very mild, just a couple spots on my torso. I could use Triamcinolone cream for a day or two and it would be gone for weeks. Early last summer (I'm male, late-50s) it flared up big time and became widespread. It had started on my torso but gradually spread to front and back of thighs, back, shoulders, arms, elbows, wrists, and eventually my neck and shins. Extremely itchy to the point that I was bleeding from the scratching. I was literally slathering Triamcinolone all over my body several times daily with limited relief. I tried some other steroid creams but nothing was effective. Thankfully, my itching seemed to lessen at night so I didn't have any issues sleeping. Long story short, I took to the internet and found some medical papers about Gabapentin for itching (pruritus) and also case studies on Isotretinoin for GD. I suggested these treatments to my dermatologist and he agreed to give them a try. I started on 300mg Gabapentin 3-times daily and 40mg Isotretinoin once daily and I've never looked back. It took 2-3 weeks for the Isotretinoin to start making a difference but in the meantime the Gabapentin REALLY reduced the itching. I took myself off the Gabapentin after 2 months because the Isotretinoin proved to be VERY effective by itself. Yes it makes your skin and lips dry but that's because of how it works, causing your skin cells to shed and renew more quickly. I'll gladly take that minor discomfort all day over the misery I was in previously. Now I'm "maintaining" with 40mg Isotretinoin daily but experimenting by skipping days here and there to find the minimum effective regimen. I've found that too many days off causes it to start coming back so I know this flare isn't "done". I'm encouraged by the experiences of several here who said their first flare was the worst but really, now that I have my silver bullet, I can manage it and life is good again. Hope my post helps some other folks our there.

Grover’s Disease
I guess I’m a newbie; My derm diagnosed Grover’s less than a month ago. I simply can’t imagine dealing with horrible itch for years. Mine stared with an annoying itch on my back. I thought it was the usual winter dry-skin. Fortunately, it was time for my annual derm checkup. By the time the day of my appointment arrived, I found myself scratching my arms and legs. I didn’t see spots and felt no bumps. My doctor must have seen something on my however, back because he decided to take a biopsy, and scheduled my return in three weeks. Nearly a week after the biopsy, his office called with the Grover’s results. He called in tub of Triamcinolone Acetonide Cream USP, 0.1%. I honestly can’t tell it does anything to relieve the itch. Since the first doctor’s visit, the itching is much worse. It attacks from the top of my head to the feet. Trying not to scratch seems impossible. My sleep bank is begging for attention, but how do you sleep with this ceaseless itch? If any of you seasoned Grover’s have a suggestion, I’d love to know them? I finally visit the doctor again next week. Is there anything special I should request or asked him?

Having had GD now for almost 10 years, I have found two things that work for me: ice where it itches for about 20-30 seconds, Cilantro smoothies. If you look back at the old posts on this and the FB site you will find a lot of ways of dealing with this miserable situation.

I was diagnosed with Grover's Disease last year after I had Covid. Received steroid injections every 2 weeks. My hair fell out, and my skin became very thin and bruised all the time. In other words, the treatment was worse than the disease. The outbreak subsided for about six months, and now it is back and it itches evermore. The best to help me during the outbreak and itch is to take a cold shower and apply Witch Hazel to the skin before bedtime. The latest discovery for me is drinking pure Matcha tea powder from Japan, mixed in hot water with no sweeteners added. Try to stay cool and stay away from stress if possible.

Also recommend the FB group. Around 3,000 people there with GD. Different things work for different people but very few are "cures" as there is no cure. Some people seem to be having success with Dupixent, which is hard to get and expensive.

Highly recommend Triderma Protect & Heal Non-Greasy Barrier cream - it's the only thing that has worked for me after 10+ years of on and off flare ups of GD. You can purchase on Amazon. Reasonbly priced and worth it. I use it after shower when I don't have a flare up and twice a day or more (before exercise when I'll be sweating) on a flare up.
Cheryl Lee MD has some barrier creams as well but they are a lot more expensive and don't work as well (athough they are second place). '

It is definitely worth a try and will buy it today, thanks much.

How do you think the Matcha Tea is helping you with GD?