Is there any relief for Grover’s disease?

@lisas893 yes, I completely understand trying any and all things to remedy the symptoms and suffering from these horrible skin issues. I also don’t know enough about the condition or the drug but felt compelled to alert users just in case. I hope you find relief in whatever you choose. Thank you.

I was diagnosed with GD in late summer of 2022. After trying all kinds of creams, steroids, antihistamines, etc., my dermatologist suggested Dupixant. I declined due to the side effects I had read about. In January 2023, she suggested using Adbry (off label). I agreed and it has been a godsend. I have had zero side effects.

It is as all biologics, very expensive. She was able to get me enrolled in the 2 year bridge program offered by the manufacturer which allowed me relief at no cost. It took almost 2 years to get my insurance to cover the medication as a diagnosis of severe eczema. I now pay $125 copay for my monthly shipment of meds which is well worth it.

For those looking for relief, definitely ask your doctor about Adbry. Good luck!

@ceolsonn thank you for sharing that! I am so happy you were able to get the help you needed. I take my second dose in two days and I’m so looking forward to it. Even after just the initial 600 mg dose I have been able to cut my nightly dose of 20 mg Cetirizine in half and sleep most of the night without being awakened by itching. It’s the little things like that that I miss!

I dealt with severe GD for 4-5 years. An itchy and painful rash that would cover my front and back torso from my neck to my bikini line. At that time Dupixent was new on the market and mainly a treatment for Atopic Exzema.
Read up on using cilantro. It seems to help about 30% of us, myself including. I learned on a Mayo GD site mid February 2019 by a blogger named Kimass1 about cilantro working as a heavy metal detox and for some cases arresting the GD. A group of us tried it and we documented our experiment on this Mayo site. As I mentioned it worked for some of us. I've been free of GD since mid 2019. Be advised that on the Facebook GD site it warned that too much cilantro can have negative side effects. I blended up 1/2 bunch daily for about 6 months, evidently that is too much and can harm kidneys, but my kidneys are in perfect shape. One half cup a day of stems and pieces is considered safe. You could be helped, so why not give it a try. In my 4-5 years of misery not one single expensive dermatolgist recommended topical I bought gave me any relief.

I too had that experience using everything under the sun. The last pill prescribed was Cetirizine (Zyrtec) at 40mg daily! Usual dose is 10mg in 24 hours. Life was not good. After suffering for 4 months I decided I wanted to try Dupixent. I am getting this very expensive medicine for zero dollars thanks to my Dermatologist applying for me for PAP (Patient Assistance Program). She gave a loading double dose at the office, sent me home with a month's worth and I received 3 months worth yesterday. I also took my first self administered dose yesterday. So two weeks into treatment and itching is gone, rash gone almost completely! FYI-She diagnosed me with a secondary condition Spontaneous Urticaria (Hives) which Dupixent is approved for as it is not approved for Grover's even though it works for my Grover's. God bless and good luck!

@lisas893 so happy for you! I just keep hoping every day, every week, that mine will just go away 🥺

@ag66 I’m praying that you get relief. I hate putting more chemicals in my body but it was a quality of life trade off. I’ll start a taper at some point and praaaay it doesn’t come back. Believe it or not I’ve tried Triamcinolone, Sarna, and different topicals but by far I’ve had the best results from just plain Calamine lotion. Totally contrary to everything I’ve read. Best of luck!

@lisas893 that’s so funny you said that, my husband suggested calamine lotion!
I’m on my third steroid topical; I don’t think they work that well.
They just end up irritating my skin.

Same for me. It seemed to keep everted and angry. I hashed calamine and within a day it began improving and over about 5 days it was almost completely dried up and mostly gone. It also acted like a barrier between my rash and clothing. Anyway I hope it helps you or anyone else.

You failed to mention trying cilantro. I suffered greatly for about 4 1/2 to 5 years. GD was incredibly itchy and in my case extremely painful. At least my sides were clear and I trained myself never to roll over in bed. My back was so painful I couldn't sit back in a chair or lay down on my back. I had to drive hunched over the steering wheel because I couldn't lean back in seat. Like you and most of us, none of the topicals the multiple dermatologists I saw over the years ever gave me any relief. If you haven't tried cilantro yet, let us know and many of us will tell you what we did. I've been free of GD now since mid 2019.