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

I was recently diagnosed with Grovers. I’m a 63 yo female and have suffered extremely itchy bump like lesions all over neck, core and sporadically on arms and legs for over a year. I was convinced they were flea bites as I have 5 cats. I’m getting some relief from prescription steroid creams and trying cilantro capsules. In the last day or so I see what looks like scratches that itch. Unsure if they are related to Grovers. My anxiety is at an all time high especially with this covid crisis. Does stress contribute to these eruptions? Thank you fellow sufferers for your edification and advice.

Make a cup of tea and schedule some time to read this entire blog starting Sept 2016. So many of us like you were floundering and searching for answers, if nothing else you will feel connected. You are not alone. No prescription helped me. Steroids did nothing. Derms simply figure since it is chronic we have to live with it but prescribe steroids at first just to give us hope.

MY BREAKTHROUGH. A post by kimass1 on Feb 27, 2019 was life changing for me. She is an angel to me.

Her recommendation of a cilantro treatment helped me and does almost 50% of those that try it. She will also refer to an earthclinic blog in one of her posts and I followed that link and read the entire GD blog they had going which certainly motivated me to drink cilantro and I believe fresh or fresh frozen is the only way it works. Good tips on freezing in this blog.

As far as stress goes, stress affects the entire body and can lead to auto-immune diseases like eczema, but once you have eczema you always have eczema- which can come on go at random.

Also go to dermnetnz.org, best skin site for all types of skin issues and look up GD, best group of photos I've ever seen. Also realize how little is known about GD compared to other types of skin diseases and you will realize there is no know effective medical treatment.

Since medical science is not helpful open your mind to "thinking outside the box" and keep searching for alternative treatments if cilantro doesn't work for you.

I no longer drink my cilantro smoothie (a heavy metal detox), gave it up after 10 months. I'm still GD free today and have been outside sweating and in the heat, yet must immediately shower and then lightly towel off and splash torso with witch hazel, another blogger tip. Witch Hazel is anti bacterial and even though my GD is not active I always have a dozen residual papuales on my lower back and going up my spine almost to bra line. Not a issues, but just a reminder my skin has changed and these tiny papuales are scabbed, and will sting a bit with the WH for a second. But they do not itch or cause pain.
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Also research heavy metals being tied to numerous diseases like Parkinson's and GD. Research how cilantro and also other herbs can help with detoxing- pulling the heavy metals which has accumulated in our senior bodies out.

We are all eczema warriors on this site. We have to personally fight to get our lives back. No magic pill or topical for us that doctor's can offer.

The cilantro capsules are of very limited help, if at all. Fresh or fresh frozen is the way to go.

@helpformeandu I truly agree with gardeningjunkie. Read this blog from the beginning. Even though others may have symptoms different from yours, you may eventually experience other symptoms and you will be prepared. Do not give up being patient with the cilantro. It takes longer for some than others. While it is doing it's detox work you can try topical creams. All are mentioned in the blog. I am also stressing the importance of having cotton next to your skin. Even your synthetic upholstery couch may affect your neck or scalp. Pillow cases, sheets, covers should all be cotton. I learned to place a cotton pillow case on the back of my favorite high-backed upholstered rocker to protect my back when watching TV. I am 16 months from initial outbreak. I was religious with the cilantro for over a year and just recently cut it down to once or twice a week, mostly for the benefit of the fruit and cilantro on my digestive tract. If I have an occasional area that begins to itch the bumps don't even show. The itch now comes from deep within. I simply apply triamcinolone for one or two applications. Then I increase cilantro shakes for a bit. I have a double whammy with leiomyomas associated with HLRCC which also itch and hurt. I have found that stress can be a major culprit. It definitely creates havoc with the immune system. During this time of Covid it is best to try to be as healthy as possible and keep your immune system in tip top shape. The good news is that you can always return to this site to brag, complain or question. We are all here for support and to support. Good luck.

Very good advice about cotton next to the skin. Also the cotton must be soft, some feel rough and scratchy next to my permanently sensitive skin then I never wear. Upholstery fabric is not only full of blended fibers which I am allergic to because blended fibers like poly/cotton, nylon, elastics and such are blended with substances derived from rubber, which many are allergic to like me, but all of us should avoid these fabrics as they often have Scotch Guard, wrinkle free chemical processing, fire retardant and other chemicals which contact us and also off gas though our skin raising up our histamine army. The previously mentioned substances you will react to if you have adhesive allergies, another common allergy. If your sofa is fabric and you don't know the materials or chemicals added cover with vinyl or plastic and then put a cotton quilt or blanket over it. The vinyl will be a barrier to off gassing. Our skin is not occlusive. All this junk is transferring through our skin into our blood stream and for some of us with time our bodies start rejecting it, thus raising up our histamines trying to attack what they perceive as toxic. Thus our inflammation is raised. Google it, all this info is out there. Yet the government allows an acceptable amount of these toxins, as most people don't develop these allergies. I am the 5-10 % that has a lower tolerance level, this site is full of us who have learned the hard way what damage all these substances and chemicals can do to our bodies.

Here's a 3 week update on my use of clove oil to treat GD which I believe in my case probably comes from Demodex mites. There are no 3 dimensional bumps anywhere on my body. Sometimes I can see red spots that look like they are below the surface of the skin and I address right away with full strength clove oil and they disappear. My routine is as follows. Full strength clove oil on areas of most recent outbreak (although no visible or palpable bumps) which for me are neck, right shoulder and across shoulder blade area in back, 3 times a day - after twice-a-day shower and then again just before bedtime. Sometimes the clove oil produces a burning sensation, and sometimes not. I have not itched at night at all with this regimen, but I wake up with a tickle feeling mostly on my back. I use more dilute clove oil (or tea tree oil in more sensitive areas of my body) over other areas if they are itchy. My back remains the most itchy area, and as I mentioned in a previous post, that itch has existed for several years and I now believe it's related to my GD outbreak. I agree that soft cotton is best against skin. I can also wear a soft rayon knit fabric. Tight works best for me, as loose "tickles" my skin. I also have found, as others have mentioned, that my synthetic couch fabric is extremely irritating and I put down a soft cotton towel to buffer. My itch now is more like a tickle.

I still use cilantro and chlorella in my smoothies every morning, because...why not? Who doesn't need heavy metal detox these days? I also continue with 4 grams histidine and 3 grams lysine in my smoothie as well. Neither the lysine or histidine had any effect on my GD, but the histidine is reported to help with eczema and the lysine, in my case, helps to balance out too much arginine in my diet which includes lots of nuts and seeds and no animal protein. The histidine seems to have done what it's meant to do - moisturize skin from the inside out. I don't need nearly as much moisturizer on my arms and legs which always used to look like snake skin, but now looks like baby skin 🙂 I'm pretty sure I will have to continue with clove oil for months to come, maybe forever, perhaps going to a more dilute preparation, or maybe alternating with tea tree oil. The only down side is I smell like cloves and people definitely notice, even after I have left a room. Now that we are socially distancing, it's probably the best time possible to be doing this. If I had to work in an office smelling like cloves, not sure how that would go. People don't find it objectionable, just distracting.

I was thinking about the statement in medical literature that GD is more common in immunocompromised people and the possible connection between GD and Shingrix vaccine, as quite a few of us have noted. My back itch may have been a subclinical expression of GD and then with the Shingrix vaccine (to which I had a reaction) and subsequent shingles, my immune system was certainly not happy. It's all conjecture, really. As always, I am grateful for all your sharing advice and support.

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.

Diagnosed through biopsy. Derm said to try this website as nothing he could do. So started cilantro smoothies. Every day for 7 months. Went away and came back once...started smoothies again. One week—all gone. I’m 73 year old mail. Run and work out in heat. Smoothies were great and improved my regularity. So stick out smoothies for 6–7 months. I used yogurt and orange juice. Came to finally enjoy them.

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.

Male. Not “mail” damn auto correct.