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

I'm in month 6 of Grover's. My son is a competitive swimmer and has a lot of travel meets in extreme heat so no surprise where it started. I have been using a tub of steroid cream but told I need to take a break so it doesn't thin my skin. I've checked holistic options and using Witch Hazel now which seems to help but burns a little. I also read vitamin C helps so trying that as well but have to say reading that some of you have had this for 3-4 years is really disheartening. Any other suggestions? My son is senior in highschool and will be swimming in college (Cal - Go Bears!) so avoiding heat and sun is a little tough, especially in California.

It seems like a lot of reading, but a highly recommend reading all the posts on this list. Take notes as you go. Now you will have a compendium of many experiences with this disease. Consider that many people who have stumbled upon what works have posted it here, then gone on with their lives. They aren't hanging out to re-post their success story each time someone new asks for help. Others have posted what worked for them multiple times and gotten tired of doing so. Those who remain active are wonderful supports, but your answer may be buried in the archives. For me, it is occlusion that triggers it. Think 3 hours in a vinyl dentist chair. High menthol lotions (Ben-gay) help a lot for temporary relief. Sleeping in a hammock (because your skin can breathe) was amazing. Claritin finished in off. I'm in remission now. Others have been helped through many methods.

I was diagnosed with Transient Acantholitic Dermatosis (Grover’s) in 1976. As the name implies, it has been “transient” in that it has come and gone throughout the years.

No dietary changes have ever proven helpful in my case. Photo Therapy has been very beneficial, however. OTC remedies that have been effective are menthol lotions, such as Gold Bond anti-itch (I use Walmart's brand).

It’d also advise keeping a spray bottle of equal parts water and Witch Hazel in the fridge for instant relief from irritation.

Thank you - the bottle in the fridge is a great idea!

73 year old man, GD for 6 months. I have found something that provides me with relief. I qualify this claim because GD is "transient" and I could just be going through a temporary reprieve.

Disruption of sleep at night due to itching has been my primary issue. Like many others the itching seemingly intensifies at night. Cold showers, a myriad of ointments and antihistamines only provides limited relief. Lying on a mattress causes heat to build up and that heat sets off my GD causing the familiar rash, red bumps and crazy itching.

A month ago I started using a cooling mat on my mattress. It's a thin mat which has a cooling unit attached that circulates cool water through the mat. It's about as noisy as a room humidifier. The itching on my back, sides and legs stopped right away and the red bumps and inflation has gradually subsided. Unfortunately, I can't sleep on my stomach, but a large ice pack over my chest and stomach helps. I'm getting better sleep! Finding ways to keep my skin cool has worked better than anything else. Good luck, all!

Has anyone in this group actually gone to Mayo for treatment for their Grover's disease? If so, were they at all helpful since there doesn't seem to be a definitive treatment....just try this....try that. At this point I believe I've tried every known treatment to no avail and I'm getting desperate.

The medical community knows very little about Grover’s. In the 40-plus years I’ve had this malady, only two things have worked for me: Photo Therapy and Prednisone. Each has cleared it up, but it eventually returns.

Obviously nobody famous suffers from this, or there would be more research in progress. Once Rock Hudson contracted AIDS, the entertainment industry organized and a worldwide campaign began. Grover’s is not deadly, so I believe we have to endure as best we can.

Yes. I went to Mayo dermatology for a second opinion and it was there that they confirmed it by biopsy. The dermatologist recommended steroid creams and that's it. To be fair, he knew I was under the care of a local dermatologist.

I’ve been to 19 different dermatologists since 1975., including an intern study in 1976, wherein I was examined by six different dermatology interns. Through this time it became obvious that some of these doctors were quite hesitant to offer a diagnosis…even experienced practitioners. One long-established dermatologist actually told me, “I can’t tell you what it is, but I can tell you what it isn’t. It’s not dangerous, it’s not contagious, and it’s not cancer.”

The only “expert” that was confident of his immediate diagnosis was the one who brought in the six interns in 1976. He identified it as Darier's Disease and then biopsed. The biopsy came back from NYU pronouncing it as most likely Grover’s, since Darier's is hereditary, and there was no history in my family. And Darier’s is progressive, whereas Grover’s is transient.

I’ve put up with this most of my life, and the one thing I will not do is put a lot of faith in a doctor that seems cock-sure of what this is or how to treat it. Although I do not put myself in the same category as a medical professional, I believe my 47 years experience with Grover’s give me some credibility, especially since most doctors I’ve consulted have nowhere near my experience with this disease.

You have my sincerest sympathies. Anyone who has put up with this miserable condition for 47 years deserves a medal. Not that you, or I for that matter, have any choice, amazingly, you seem to have maintained your sanity.