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

Posted most of this previously. There is an update at the end.

In 1992, at age 51, I had a large melanoma removed from my back. At that time I was getting a lot of seborrheic keratoses, and some actinic keratoses, and had a kind of rash of small red spots on my chest. I saw another dermatologist who biopsied the red spots which turned out to be Grover's Disease. Other then annual full body exams for a possible recurring meloma and a few basal cell carcinomas removed, I didn't have any more problems until January 2007. The Grover's was always there but didn't seem to bother me.

At the end of 2006, I retired and moved from a foggy climate to a more dry climate. By January 2007, I started having terrible itching on my chest and back. A new dermatologist again biopsied the red spots and they were still Grover's. He prescribed ointments, including a pretty expensive one (Dovenex), but none of them helped very much. The only thing that sort of worked, out of many tried, was Eucerin Itch Relief. Most of the time I was reading and posting on a website called Skincell. There were many people with many wild (IMO) theories as to what causes Grover's. Some attributed it to the mercury in their dental fillings and were having all their fillings removed and redone. In addition to the itching, the red spots often got a little crusty and would sting if I got sweaty.

I finally got an appointment with Dr. Jack Resneck at UCSF in June 2008. He prescribed Gabapentin (Neurontin), 300 mg every night and the itch went away. It was gone until about June 2021 when it started coming back slowly. I don't know if the Gabapentin really worked or the disease just went away for 13 years.

UCSF was across two bridges and about 35 miles away so I had found a dermatologist closer to home for my annual exams. As the itch bacame as bad as it's ever been, I've tried to get the new dermatologist and my PCP to prescribe something to help. The derm prescribed Triamcinolone Acetonide Cream, which can cause or worsen glaucoma. As my wife has some serious glaucoma, I couldn't risk it. I used the Eucerin Itch Relief for a few months then my PCP prescribed Hydroxyzine which gives me some relief as it makes me go to sleep. When it wears off after about six to seven hours, the itching comes back. To honest, I'm not sure if the widespread ketatoses don't also itch.
Apparently, the website Skincell is no longer what it used to be and this site is one where I can find other people discussing Grovers. I was hoping there had been some kind of breakthrough in the last 15 years. Apparently not. I'm now also on the Facebook Grover's page.
I'm curious about the Cilantro and Chlorella smoothie approace but I'm one of those people to whom Cilantro tastes like soap.
9/1/23 Update: I've been taking Cilantro and Chlorella capsules for 4 months today. No help. I've also been using Eucerin Calming Body Wash for about 5 months which seems to help on a sporadic basis. Still using Eucerin Itch Relief when it gets real bad which helps for sever hours and taking the Hydroxyzine.
Assuming the 13 years with no itch was due to the Gabapentin and not the "transient" part of this disease, I would have to recommend trying the Gabapentin to anyone new to this misery. Just remember, nothing seems to work for everybody.

I think I might ask my doctor to do a 5 day extended allergy test on me. I had the in office test with it all over my back and only came back allergic to dust mites, mold and cats. I live in Southwest Florida so dust mites and mold are a big issue. However, my skin has been hyper sensitive my entire life which runs in the family. Do you think this will be helpful or useless in treating my GD?

I can offer you is sympathy but wish I could do more as what you are describing is not like any GD conditon I have heard of I wish there was a hospital dedicated to skin diseases like MD Anderson in Huston. You have to keep trying and another biopsy could help. From my experience biopsies have to be taken at the right stage of a breakout. My GD biopsy was negative. I was almost at the end of my initial GD breakout which lasted 1 year about 5 years ago when I went to a new derm who took one look and listened to my symptoms and immediately told me I had GD. Others treated it like my Allergic Contact Dermatitis, so of course nothing helped previously because basically no meds help with GD. Yet when she took a biopsy it came back negative. She told me at the time of the biopsy that for the GD biopsy to identify GD it needed to be in the active stage. Yes I had the clusters of classic rashes all over front and back torso, upper and lower but they were scabbing at the time of biopsy. All I can think of is for them to accurately find the GD it has to be a fresh active area. Also what is your biopsy testing for? Is it limiting the test to GD? Can they biopsy for hives, shingles or other skin conditions with the same biopsy. You could have multiple skin diseases and your doctors are limiting their ideas to GD.
You are one to study. Have you gone to the New Zealand Derm site, dermnetnz.org, a site which helped me identify one of my 3 forms (once again incorrectly treated as my original form of eczema by derms. Start with a blank slate and search their skin site for your symptoms, not assuming it is GD. This site has the best batch of photos of actual patients with the skin condition. You will find various appearances with each type, even GD as we know has variations, but if you search though the pages you may find a photo of hive like rashes like yours.
I though my GD might be coming back as my lower back in the center was itching, yet confused because upon closer inspection the itchy area was just one wildly itchy non healing bump! Nothing remarkable in appearance but it would not heal for at least 3 months. I could scratch of the scab once crusted to only have it return and never heal. It never had puss and didn't bleed but a bit, like you mentioned. My back in that area is still not smooth as I can feel a few little bumps, but they do not itch. I believe GD permanently has changed my skin layers. This one bump was so itchy it felt like if was dozens of GD papuales. I changed my gardening clothes from loose 100% cotton jeans, held up with a 100% leather belt (I'm not allergic to the 100% or the leather) to 100% cotton bib overalls. The belt and the jeans but pressure right at this bump and rubbed it when bending over. The overalls have zero pressure. I also broke down and used a steroid on the papuale. Steroids never helped with GD. Yet after eliminating pressure and adding a steroid after 2 weeks it was 60% better. Stopped steroid and still better, but scab is still there and will leave it alone this time. I think the friction irritated my GD damaged skin and this papuale may not be GD but simply weak skin. Now just minor non-troubling itch, yet it's not gone. I still make my cilantro smoothie and plan to for life. Still this doesn't account for your random hives, mine seems to be triggered by pressure and it was not a hive.
Your situation really sounds like an allergy the way it moves around in areas not normally associated with GD. Does it happen more if you go outside? I have a friend my age that just this year started getting hive like welts on her arms, legs, scalp, face and even unexposed areas after she gardens. It sure seems like allergies, but when she gardens she never leaves her patio or sidewalk, just reaching into flower pots or little flower beds. No dietary changes. Maybe it's in the air as she lives in a wooded area.
You helped so many of us with your input about cilantro and hope others on this site have ideas for you.

I did go to an allergist after first dermatologist misdiagnosed me he told me to get a biopsy and that showed GD

Ice packs !!! I've had GD for about 5 years now and have tried every topical that gets mentioned on this site. None worked. I did Cilantro smoothies for about 2 years and the disease disappeared for quite a while. It came back in a limited way in that it migrates over my stomach area . It effects one area dies off but just moves to another area. The only thing that quells the itching for me is ice. I put a small ice pack one the area that itches for a couple of minutes and the itching subsides for fairly long periods of time. So far for me, it is the most effective way to deal with the misery. It was something I learned on this site, much the same as the Cilantro smoothies. I take Cilantro oil every day. I am not free of the disease at this point, but at least I have found a way to "manage" it.

My itch covers my entire back and often most of my chest. Icing all that down isn't appealing to me and is possibly dangerous. I've been taking 4 cilantro capsules and 1 chlorella capsule a day for a week over 4 months with no relief. 2 Hydroxyzine tablets get me through the night along with Eucerin Itch Relief.

It's awful that we have to suffer like this. I believe I was misdiagnosed with Miliaria (heat rash) rather than GD 20 years ago. This is when I lived in San Diego (originally from Boston area), which was a dry climate. I was getting a lot of seborrheic keratoses as well. I went to two separate dermatologist and neither did a biopsy, I was only given clobatasol . Clobatasol never worked so I suffered, but the heat rash was only on one side of my back. I moved to Southwest Florida 7 1/2 years ago, which is very hot and humid all year long. The dermatologist also diagnosed me with Miliaria and gave me more clobatasol. Every annual f/up she said it was Miliaria. I got COVID twice, the 2nd time was on Christmas of 2022 but stayed very sick all through January and February of 2023. Needless to say the Miliaria spread to my stomach and chest. I went to my dermatologist and saw the PA this time and she immediately said that looks like Grover's Disease. She did a couple biopsies and sure enough it was positive for GD. They tried to give me clobatasol again and I said no. The gave me Fluocinonide cream 0.05% which worked a little bit but came back once stopped. She then gave me Triamcinolone Cream which also works temporarily and came back once stopped. She prescribed Hydroxyzine but I had side effects. I tried Chlorella but my liver readings came back very high on my blood work. I don't like fresh cilantro smoothies so I take cilantro drops nightly which helps with my burning and stabbing (I don't itch). Someone mentioned on the Facebook group that they put deodorant on their chest and stomach where they have spots and sweat. I actually tried it for the last three days and it's helping. I was shocked. I believe the gentleman who runs the Facebook page says the deodorants that work have aluminum chlorohydrate in them. He explained early research for GD thought it was a sweat disease. Chlorohydrate Aluminum stops by blocking the sweat by binding with the proteins in the sweat to form a proactive membrane over the epidermis that blocks and seals off the sweat glands also shrinking them. I started to sweat where I have GD spots since COVID, I never did before. Hopefully the deodorant will continue to help along with the cilantro oil. I wish you the best!

I too have tried it all. All the prescriptions, all the cilantro smoothies but nothing helped. A chopped clove of garlic mixed with a table spoon of honey each morning has been the only thing to help with my grover's disease. I was eating the garlic and honey due to a gastrointestinal issue I was having but it also helped with my grover's. Amazingly. I can only assume that it has something to do with gut health and getting that balanced again which is what the garlic and honey does. Good luck.