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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?
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.
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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.
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.
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.
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.
My blood test showed a true allergy to aluminum. I don't drink sodas or cook with aluminum, but I do drink 2 cups of black tea daily. Yes leave the bags in which contain a staple- aluminum probably. Worst of all black tea is toxic as it is only grown in one place, one rejoin of China that has coal burning factories and industrial wastes galore. I am going to cut back to 1 cup of tea daily and avoid my bags with staples. Once that tea is gone am going back to decaf coffee- but better check out the chemicals used to decaffeinate.
Still in spite of drinking black tea am still GD free and am able to go outside with the heat. My back doesn't even sting with sweat. Even rash free skin would still sting if hot or sweaty for 6 months after being rash free.
Thanks for doing the research for us, I know GD will return for me again someday.
I have water softening using salt, I had never heard of the citric conditoning. Will it be easy for your to switch to salt?
mnitchke- Hang tough- my first outbreak lasted a full year, then waned, cleared and came back in 6 months on and off for a few years. My point being you will have better days so be hopeful. Yet cilantro did the trick for me.
I must admit my symtoms were classicly limited to torso front and back. What concerns me is the extent the rash covers your body.
Was your heavy metal test a patch test or blood? My metal allergies showed up in my blood test but not in my patch test and I have have had 2 complete rounds of patch testing over the years. My aluminum scored almost to severe, then nickle a medium moderate and 3 others as mild. The ortho said even though not allergic to the bone cement or titanium traces of all the other metals are in the implant. I paid $600 out of pocket as Medicare doesn't cover allergy blood test before TKR, even with a history of being an allergic person. Because of that backed out of TKR.
I also have 2 other forms of eczema. Severe ACD to many common daily contacts. Like you developed eczema as an adult. Have you had the 5 Day Extended Patch Test for Allergic Contact Dermatitis, ACD? Yet you couldn't now if broken out on the back. I am wondering if the rash areas other than the torso are caused by ACD allergies and not GD at all. Doctors made the mistake of believing my GD was related to ACD issues for years. When you go into remission I would recommend the 5 Day Patch test for ACD.
Also do not get the adult shingles vaccine, Shingrex- big mistake for me as I got a case of shingles for the first time within a week after the first injection and derm said it was directly related to the vaccine.I am not getting the second injection. I had thought I was breaking out with GD again, even though the rash was different looking. People complain about shingles- in my case I can testify that it nothing compared to the itching and pain of GD! Plus it only lasted me about 2 months.
I have a water conditioner, not a softener. I wanted the minerals but not the destruction of my plumbing. That was my goal. The product I have is NuvoH2O. The cartridge is out of the unit so right now, no citrate (I'm not there for the summer, anyway.) I can just not add the cartridge when I return. I have a backup electronic unit, Scaleblaster from Home Depot. It actually works by taking the calcium out of suspension and turning into little flakes that don't stick to the plumbing. I know it's working because I have a glass electric tea kettle and I can see the little flakes. I can pour most of them out or I can add a bit of vinegar and turn on for one cycle. I am plumbed for a salt based water softener if I decide to go that route.
I ordered a silica supplement. Silica is also thought to be beneficial for reversing and slowing bone loss. I am osteoporotic but I won't take the medications, so it will be interesting to see if this helps me in that respect. People report their hair, skin and nails greatly improved. Who doesn't need that?Also I am looking at different mineral waters. Fuji water, which I just bought, has 92 mg/L of silica. San Pellegrino has less. I have been a guinea pig for so many supplements in my search for the cure, and although many have been dead ends for the GD, they have been beneficial in general. The clove oil took care of my rash and itch everywhere except across my shoulder blades on my back. The itch and rash persist. However, I had an itch there for a couple of years before my GD diagnosis, so it might be another problem (I'm still working on the mite hypothesis for everything else.) Maybe aluminum? I can only hope (lol) since silica seems effective chelator for aluminum. I also ordered a far IR sauna, again on the assumption that I have this Demodex mite problem. It heats deep to the skin. You can't get your skin hot enough to kill the buggers. If it doesn't do anything for my rash/itch, it seems to have many beneficial effects and I am hoping it will also help my husband with some of his health issues. It's actually been shown to benefit those with heart failure – how counterintuitive is that! I figure that since pretty close to 100% of people my age have Demodex mites, and it's only those who are particularly hospitable to them that are symptomatic, it will be a management situation and not a cure. Shoot, with all these supplements, I should live to 100 and die with fabulous skin. So far, I'm still ingesting the cilantro and chlorella, lysine, histidine, black seed oil, collagen, hyaluronic acid.
Just a quick comment about the clove oil – I still use 3 times a day full strength, although lightly on those areas showing no symptoms, and more concentrated on those areas that are symptomatic. It has the advantage over the other essential oils shown to be effective on Demodex mites because of the numbing effect. It also cleared up case of impetigo I had in my elbow crease. Peppermint oil didn't do much to my GD. Tea tree oil, even when diluted, dried out my skin terribly and made it itchy because of that. I would love to lay off the clove oil soon. It's not so bad when we are socially distancing, but I have to explain to people new to me.
I'll look into silica and appreciate you sharing your treatments.
I have had amazing results with collagen. Noticeable hair growth after 6 weeks for my fine hair, grows faster too. I have a healthy diet full of protein and take calcium supplements so surprised by this result. Hasn't helped my arthritis or fine lines on face. I do take lysine and chlorella, not sure they help, but don't seem to hurt. The cilantro did help me, but went off in Dec, no need and GD hasn't returned. I took so much started noticing dark spots on face, yes sun damage, but much darker and read on internet this is a side effect of high does of cilantro.
I still do the Witch Hazel splashes on torso after shower as I find it refreshing. It will sting if broken out, but the sting to me is preferable to the itch. The sting would stop the itch for a few minutes.
Like you Tea Tree oil did nothing beneficial and think I may have a contact allergy to it. At Christmas you will smell like a holiday cookie if wearing clove oil.
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 !!
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