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

I have multiple allergic contact allergies, Aquaphor Healing Ointment Advanced Therapy has worked for me for years. Ointments are not delightful like a cream, but even hypoallergenic creams contain some sort of preservative (I'm allergic to most) for the water base or alcohols. Creams actually end up drying your skin even if not allergic. I shower, towel off, douse torso with Witch Hazel and after air drying or taking a hair blower for a quicker dry off I slather my entire body except face with the Aquaphor. In order not to bother my husband I use a long handled spoon to make sure my entire back torso is covered, my spine skin really needs it. Wrap in a towel for about 15 minutes or put on a cotton robe. Surprisingly it does permeate some because of the lanolin. No more flaky leg skin where I shave and even if I didn't coat myself after showering I can still go days and my skin still looks and feels healthy. I use on my hands which suffered from hand eczema for 10 years before testing. I reapply after hand washing or dishes, etc. My 10 year old grandson commented a few years ago saying, "Grandma your hands are so soft!" and yes that is true. Test first inside of your elbow for a full week, reapply several times a day and before bed to check for reaction. I use it when broken out with GD or in remission. With GD we have lost our collagen keeping our skin cells tightly bound and this provides a barrier.

Just to let you know, Walgreens sells a back applicator with two handles and applicator heads. One is a soft luffa type and the second is a head that you fill with your desired medication and just roll it all over your back/self. It has two long handles, is very effective and is very inexpensive.

Just to let you know, Walgreens sells a back applicator with two handles and applicator heads. One is a soft luffa type and the second is a head that you fill with your desired medication and just roll it all over your back/self. It has two long handles, is very effective and is very inexpensive.

A long kitchen plastic spoon or unvarnished wooded spoon works fine for me as I am not allergic to plastic and unfinished wood it fine. For wood you can drill a hole in the handle and my plastic spoon has a hole in the handle, I run a cord though it and have added a plastic stick-on hook in the shower to keep it handy. It's always greasy and don't want it contacting other surfaces. I can reach most of my back with my hands. It's just right in the middle between shoulder blades which is impossible to reach. I used to love the way luffa felt and used to treat myself to a massage once a month when working, but GD has changed how my skin feels. I don't enjoy being messaged on back, upper or lower, even when in remission. If I used a luffa it would feel like cat scratches. Fine elsewhere, like on feet.

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.

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.