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Grover's Disease: What works to help find relief?
Skin Health | Last Active: 17 hours ago | Replies (1949)Comment receiving replies
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.
Replies to "Posted most of this previously. There is an update at the end. In 1992, at age..."
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!
Gabapentin is the only thing that seems to work for me, too.
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.
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First of all I’m sorry, I too have GD and have tried everything. Unfortunately gabapentin and hydroxizin are horrible drugs and cause memory impairment. Antihistamines do too!! Because it is considered a rare disease no one has taken the time to study it and no cure is possible. All the treatments are temporary relief and I do understand how you get to that point, it really wears you down mentally. It seems to cycle and flare at times. I’m still searching for the best natural treatment. I’d like to keep my memory intact.
Cilantro did nothing for me either . I use aveeno restorative body was and cream. Anti itch creams make mine worse.😩