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

Be careful with the Prednisone. You don't want to take it over a period of time. If the itching returns when you stop the steroid, try Cilantro smoothies or the liquid. I've had great success with Them.

I want to weigh in on the Prednisone. I have been on it for 19 months now for GCA. It is AWFUL and my Grover's came back for the second time while on it. I have had every side effect possible except for diabetes. The latest is neuropathy in my feet. I am post hip replacement 5 weeks today and all healing is taking slower because of the prednisone. Interestingly enough, the Grover's itching went away for a few weeks post surgery. I attribute it to the loading dose of dexamethasone they gave me before surgery as a precaution. It's back, and just starting to get worse. I have more cilantro in me than the farm, and use Sarna constantly so I will next try the tea tree lotion since I have some in my cabinet. Who know? It might work!!!!!!

I find Icy Hot or Ben Gay are better that Sarna, with many times more menthol. They sting for a minute, then supress the itch for 4 to 6 hours

Mariann, I am so sorry to hear about your situation. Life just isn't fair. After months of dormancy, I just got a new outbreak, although not terribly serious at this point. I still take the cilantro oil every day and will probably continue forever. I truly hope something starts to work for you. No body deserves that kind of torture.

Is any body get the itchy red dots on their neck , arms and leg too??
I was diagnosed with grover via biopsy, I tried everything but I'm starting to think
Maybe I picked some parasite on my trip to panama

Many have recommendations for GD, we all must experiment since their is no known cure or a treatment with a high success rate to put it into remission. Not one prescription or injection given by a doctor helped me. I tried them all.
Back in Feb. of 2019 a small group of us experimented with fresh cilantro on this Mayo site. Those of us that tried cilantro pills or oils noticed no improvement, although in the last year some new bloggers say the pills or oils helped put them into remission.
About 50% of us benefited from the fresh cilantro. After 3 months of daily 1/2 bunch fresh cilantro blended my itching/pain ceased and no new papuales were created, although it took over 6-8 months for the scabs to fall off. I used to get severe symptom's which covered both sides of upper and lower torso.
I did relapse in Oct of 2021 and started up with GD again after such a nice long remission, so I went back on fresh and frozen cilantro . My symptom's were mild, nothing like they used to be, yet drinking the smoothies from Nov to Jan knocked it out. I'm clear today,
I offer this testimonial because I do want you to try cilantro, it has helped me and others. Clearly it is no cure. Yet before cilantro and my first outbreak of GD lasting a full year I would have 6 months of activity and 6 months of dormancy for years. With cilantro I had almost 2 years of dormancy and my recent outbreak was more psychologically painful, then physically painful, I was fearing what was coming. When I mentioned I previously had severe symptoms' I wasn't exaggerating.

I get them on my arms and legs too, but this happened to me only after I had the disease for about 10-15 years. At first it was as most people describe, only on the front and back of my upper torso. Arms and legs are uncommon, but certainly not unheard of.

I had it on my arms and legs too. It only recently cleared up when I started an anti-inflammatory food diet.

Wow! That's a big no-no on taking prednisone for that long. The normal regimen is 12-18 days. I can't believe your dermatologist would prescribe it for 19 months! That's really dangerous. Try the antibiotics.

Hi
Anyone have Grover’s and use light therapy. My GD Is a burning sensation vs itching. Is this a normal situation?
I’m having an out break for the first time around and under my breasts. I think a little eczema as well. Biopsy confirmed. Used to be contained only on torso.
Extreme burning at times. Lots of drugs prescribed to no avail. Also how long does the cilantro take to work.
Thanks