Mayo Clinic Connect
I have been diagnosed with Grover’s disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?
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.
Liked by MariannJ, nodgabnoj
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.
Liked by babbs
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.
Liked by gardeningjunkie, MariannJ, nodgabnoj, babbs ... see all
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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.
Liked by MariannJ, babbs, justmemyself
Male. Not “mail” damn auto correct.
Liked by MariannJ, babbs
Thanks, everyone! I’m going to stick with the cilantro for quite a while. I always made morning smoothies anyway so adding in cilantro is not an imposition. While I would love if it worked as dramatically and quickly as for some, everyone’s physiology is different so I’m not throwing in the towel yet.
I am, however, thinking of stopping everything but that and the diet. I’m just adding too many variables to really know if anything is working.
With that in mind, what are some good moisturizers to use? I’ve seen Vanicream and Cerave mentioned. I have always used moisturizer, mostly on arms and legs in the winter, but now I’m hesitant to use anything.
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.
Can you please post a link to the back applicator product you recommend.
If you use a thick cream it gets caught up in the roll on applicator and wasted.
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.
Liked by MariannJ
I like the idea of a long plastic spoon. I have use a long wooden paint stirrer and a silicon spatula with a long handle. Not ideal but beter than nothing. I am going to try the plastic spoon next. It seems like it would have the best surface material.
Because I am applying essential oil to my back, I need something absorbent, or it will just drip off :(. I did see an absorbent lotion spreader with two handles on Amazon which would probably work.
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.
Liked by gardeningjunkie
I am so distressed to hear about your suffering (which we all share or have shared.) I am medical researched obsessed and since I am still suffering from GD, albeit on a reduced level from before, I am interested in all possible causes as it might be multifactorial in each of us. What makes you worse could be making me worse. What helps you might help me. My research has led me to many health issues, causes and solution and we all have to be concerned with metal toxicity. The fact that cilantro has helped so many in this group points to heavy metals as a possible cause. So I directed my attention to aluminum toxicity.
Have you identified the source of your aluminum overload? Some common sources of aluminum are chronic use of antacids, buffered aspirins, drinks from aluminum cans ( acid in drinks frees up the aluminum in the can,) teas – all varieties: black, green, white. Aluminum is present in many processed foods. Aluminum can be present in your water. Citrate can increase the amount of aluminum you absorb. (Citrate is the mechanism of water conditioning I have been using. End of that for me. I have been drinking black tea – at least a quart a day with the teabags left in the hot water the entire time – since I was 8 and I am 72. End of that for me.)
Silica (present in some mineral waters, but not all) is a good detox vehicle for aluminum. Silica is also present in certain foods: cucumbers, oats, brown rice, wheat, strawberries, onions, avocados, and root vegetables. Some bottled waters have more silica than others. San Pellegrino has silica, Perrier does not. There are silica supplements. Not sure about safety, purity or amounts one should (or should not) take. Here's an article about aluminum toxicity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782734/ Here's an article about use of silica to reduce aluminum load and effect on Alzheimer's disease https://pubmed.ncbi.nlm.nih.gov/17435954/ Here's an article about silicon supplementation and effect on reducing aluminum. https://pubmed.ncbi.nlm.nih.gov/21198634/
When I am researching something, I type in the key words and write NIH after the phrase I am researching. This brings up NIH (National Institute of Health) a government agency that sponsors research on various topics and many of the articles also summarize research of others. This keeps me mostly away from questionable sites and businesses that are selling stuff.
Hope some of this helps. Itching is a cruel kind of suffering.
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