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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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@justmemyself

Well, I guess I get to join this crappy club. I'm a 44-year old man in good physical shape and health, otherwise. Here is a (possibly overlong) summary of my history.

I started seeing a small rash -- very few -- on my stomach. They were not raised and did not itch. This was in early November of 2019. I happened to have a standard check-up but my PCP didn't think anything of it, especially as it was not bothering me, and suggested I just try gently exfoliating the skin. As that didn't do anything, I decided to make an appointment with a dermatologist. Of course, that takes forever so I had a two month wait.

Over the course of the two months, it got a little worse but nothing terrible. Just some relatively flat (maybe slightly elevated but not particularly bumpy) spots on my stomach, right around the creases. I thought it might have been folliculitis --- something my old derm had guessed at as I have had a few instances of isolated red bumps on my chest between my pectoral muscles but they never lasted long and were gone by the time I actually got in -- so I tried the Clindamycin solution I had available. It did nothing.

I get into the derm in late February of this year and they also thought it might be folliculitis. I am given an oral antibiotic -- the name of which escapes me -- but all it did was make everything worse. I stopped taking the antibiotic and things improved but not to where they were before. I went back to the derm but saw a different one as mine was out for the day. He took a punch biopsy and told me they were testing for a number of things including Grover's Disease. I think that is what he suspected.

Sure enough, the biopsy came back as Grover's. By that point, I had already read up on it, gotten depressed, and stumbled upon the cilantro smoothie. I figured there was no reason not to try it. I also used a 20% zinc oxide cream and have cut dairy, sugar, gluten (which I hadn't touched for 13 years), and processed meat out of my diet. Shortly thereafter, everything started improving. While the spots did not disappear completely, they were both darker and paler -- basically, they looked like freckles. All of them were tiny pinpoints -- I did not have any large spots.

I had one month before my follow-up and noticed I had one single spot on my shoulder, close to my collar bone. It was larger and would get a little crusty. I just put some zinc oxide on it and kept drinking the smoothies. The derm offered a topical steroid but I declined as I thought what I was doing was helping.

Since Covid-19 kicked in, my follow-up was a tele-appointment. I mentioned that things were improved -- the residual tiny spots on my stomach were pale but still hanging around, and the one on my shoulder just wasn't changing much and a few small friends would pop up but disappear fairly quickly -- but not resolved. They offered either the steroid or Calcipotriene. This time I opted for the Calcipotriene lotion.

So 7 days ago, I started using the Calcipotriene lotion. At first, I thought it might have been a positive change as my skin just, generally, felt really nice and the spot on my shoulder seemed to get smaller. But then, out of the blue, I started to get constipated. Given that my diet was clean and extraordinarily consistent, I was getting plenty of fiber, and had had NO problems prior using the lotion, I looked it up and saw that it might be a complication from too much calcium. I also noticed that my shoulder seemed to be getting a little worse. I was supposed to put it on in the morning and evening. I put it on in the morning but things weren't looking good in the afternoon, after a run and a quick shower. Side note: I was running and quickly showering during much of this time without much change, negative or positive. I used some new zinc oxide cream that was 40%. Went to bed ,shoulder was not looking great.

Well, this morning, I got up and it looks terrible. My right shoulder, around the collar bone, exploded. Again, nothing itchy, but some new friends popped up and everything is red.

At this point, I'm just frustrated. I'm 2.5 months into cilantro smoothies and, at least for me, it is not a miracle cure. I thought they were working and I'm perfectly willing to be patient but the existence of this new outbreak has me incredibly down. I'm not sure if it is the Calcipotriene lotion, the new zinc oxide lotion (other than strength, the only potentially significant factor is it has balsam of peru in it), or just random happenstance.

I should focus on the fact that I'm lucky that I don't really feel anything -- it does not physically bother me. But that doesn't mean I want to live with it. I'm the type that is perfectly happy to do what I need to do to address something systemically. Unfortunately, my derm said "we don't know what causes it, we can't cure it, so we treat symptoms". I'll compliment their candor but the lack of curiosity or creativity doesn't do me any good, either. My functional medicine doc tested my heavy metals via urine analysis and I came back high in a few things (cesium, copper, manganese, and vanadium). My mercury was nil.

At this point, other than keeping up the diet and cilantro, I don't know what to put on it for moisturizer, or to help. I might go back to my old zinc oxide but I really have no clue if, or what, is actually doing anything.

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Replies to "Well, I guess I get to join this crappy club. I'm a 44-year old man in..."

We're all feeling your frustration and you did make me laugh describing us as a "crappy club". Yep, none of us want to be a member. I know it's hard to feel grateful but most of us envy you because for us the itching and pain is the worst part.
Usually those of us that benefit from cilantro see positive results starting within the first few weeks, so as you are realizing cilantro may not be helping you.
Your diet is a classic anti-inflammation diet; couldn't be better. Cutting out processed sugar, limiting natural sugar and limiting gluten made a dramatic difference in my internal inflammation for ACD and although cilantro turned the corner for me I had also been on an anti-inflammation diet similar to yours for about 4 months when I started the cilantro so perhaps cutting out these foods also helped put me in remission.
Right now I am on my longest GD free period ever and the only thing I do is to splash Witch Hazel on torso, front and back after showering and toweling off.
I'm back to all my outdoor sweating activities.
Will it return for me, no doubt about it, just as for you- you will have better days ahead. Keep researching and sharing with us.
Unless you have had the 5 Day Extended Patch Test to determine if you have Allergic Contact Dermatitis, ACD, (which I developed at age 50) you should especially avoid B of P as it is the most common fragrance allergen.

At my insistence, I was tested for heavy metal since my GD started approx. 15-18 months post-op for a Total Knee replacement. No Chromium, Copper, or Nickel BUT I tested +ve for Aluminum! Very High! About 4-5 X the norm. Then 3 months later in a follow-up test the numbers went up again! By 15%. My Grover's is also still a major concern as it has now continued to spread through my whole body-hands, arms, back, legs, even the tops of my feet. I am miserable. My clothes are blood stained as are my sheets, & pillow cases. Nothing quells the itch. So to me there is a close connection to metal in the blood and GD. As I write this my skin in some areas is burning.

Not sure whether or not you are itching. If you have GD and don't itch, that's surprising, but count yourself as fortunate. At any rate, I have found that Cera Ve itch relief cream is pretty effective for temporarily dealing with GD's symptoms. Welcome to the club !!