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

Skin Health | Last Active: Mar 17 1:04pm | Replies (1921)

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@ghschirtzinger

My usual dermatologist told me to use cortisone lotion, blowing off the symptoms as an allergy to the Shingrix vaccine. This did not work and things spread down my legs and arms from my torso. Fortunately, the week I decided to have a serious discussion with him, he was unavailable and I met with another doctor in the group. She looked at me and in minutes determined I had Grovers, not an allergy.

The protocol she put me on is a body wash, Selenium Sulfide Topical Suspension 2.5% to use daily in the shower, and a lotion, Triamcinolone Acetonide Cream 0.1%, to be applied daily as needed to the "hot spots". At that point, I was hot all over, pretty much, so I was going through the meds quickly.

As things have gone along, I have added collagen complex (Type I, II, III, IV, V and X, 1000 mg/day) and selenium (200mcg/day) to the multiple vitamins and supplements I already take. They can't hurt me in those doses and the problem is inside the body, so why not attack from both sides?

I have found some relief also through antihistamine allergy medicine and a gram of acetaminophen (Tylenol) taken at the same time. Tylenol does not thin the blood or reduce its tendency to clot, so I prefer that.

I would also take a look at the thread on this site that links Grovers and the Shingrix shingles vaccine. I did that on a whim on an internet search and found that there is a group of people who anecdotally have had my experience in acquiring the disease. I guess it was wise getting the shot if it prevents shingles, although Grovers, as you know, can be damned uncomfortable. Some people there find relief by making a smoothie with a bunch of fresh cilantro, in addition to whatever else you put in. I have not read everything there so I dunno why cilantro has a positive effect but some there say it suppresses symptoms for most of a week, a few months and one close to a year. Obviously, I will have to try it.

The regimen I am on usually gives me 12-14 hours of peace and then I sleep. I am much better off for it, but Grovers is a daily presence. Today was a good one. Others not so good. Sleep is usually unaffected, but that is not a sure bet. Sometimes I don't have much itch but I feel wrong, tired and snippy, without anything else to explain it.

I hope this is useful. Hang in there.
Best,
George

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Replies to "My usual dermatologist told me to use cortisone lotion, blowing off the symptoms as an allergy..."

I, as others on this site, believe that it was the Shingrix vaccine that caused my GD. I still suffer from it after 3 years. I took cilantro smoothies religiously for at least two years. They did help immensely. Due to laziness and the lessened effects of GD, I stopped a couple of months ago and am starting too pay the price. The capsules are pretty much useless. However, I went thru a bottle of the cilantro extract, and just ordered another. It seemed to help, as it did another contributor on this site. Available on Amazon, Natures Path. Every body suffers in different ways from this miserable disease, and the only way to deal with it, is to read what others have had success with and experiment. Doctors have little knowledge or understanding and big pharma could care less. Good luck, and try the smoothies.

Thanks for the very helpful, detailed info. I have read about the cilantro smoothies but not planning to do that right now, as the taste of cilantro comes close to making me gag. I think I failed to mention that the derm prescribed an antihistamine to be taken at bedtime (which makes me feel edgy) and also the same cream you were prescribed and it works well. All that being said, at night I have the feeling of “movement” in my nose, eyes face and scalp which keeps me awake all night. It is my firm belief that I have demodex mites, but all doctors I have seen do not agree. Hence, the reason I posted my info on this website. Also, my eye doctor determined that I have blepharitis which, I believe is caused by the demodex infestation. Again, thank you for the info and I will continue reading this website and doing research on demodex mites because, to me, GD is not the main culprit.