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?
Working with old cars involves working with metals. You really should consider a heavy metal detox.
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RE: allergy to steroid
I listened to a Public radio broadcast about steroid addiction in which the steroid has less and less effect over time of use. Then I started poking around. RSS (red skin syndrome) can be caused by months use of steroid for months, not weeks. I have red hands that I thought was GD, But it has all the symptoms of RSS. Very interesting. Probably the "neuropathy" also.
I was curious why GD was diagnosed for hands as I have never heard of it on the hands and I have read and studied it for years. Their ca biopsy for GD but is unreliable. I tested negative as at the time my outbreak had just started going into the dormant stage, yet I am classic GD, except now because of cilantro am symptom free.
I was symptom free for over a year but recently 2 small patches have appeared on my back. Not bad like before but isolated in 2 spots. So I’m cilantro-ing again. Before it was on back, stomach and thighs. I’m okay if it remains isolated.
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I buy cilantro and freeze in freezer bags. Usually a half stalk in each. Take one bag, put in blender with a small carton of Yoplait yogurt, add orange juice and liquefy into a smoothie. Makes enough for 2 glasses. I take one glass per day. Was on the wagon for a year but it’s come back a little so I’m back to smoothies. The yogurt and OJ make for a good drink. And my Grovers goes away.
Bad news it 's returning, you and I have the similar profiles and results from cilantro smoothies. Like many others I guess I need to return to a having smoothies at least once a month to pull out the new heavy metals. I'm still symptom free. I did drink the smoothies longer than you once I went into remission after drinking them about a month, then it still took months for old break out to heal the old scabs for months. It took about 6 months for al l the scabs to fall off. I drank them from mid March 2019 until mid Dec 2019 daily. Thanks for the update and warning.
Yes, lead, zinc, etc… How does one brew cilantro? What would be schedule for taking it?
Next week I will plan allergy testing.
Dermatologist prescribed non-steroid for itching. Tacrolimus ointment 0.1% at $128 for 60g. After reading the the warning, too many doubts about using it. Plus the dermatologist is hard to assess.
Have you tried Flanax, it's capsacian (hot chili pepper). Sounds crazy, but the brief burn felt better then the itch. My derm recommended. It burns when first applied briefly for a few minutes, but then it suppresses the itch enough to fall asleep. The relief only lasts about 30 minutes, but it was a godsend for me when symptomatic. Wear gloves to apply, don't get into eyes or around your mouth. Yet I don't know if it helps with neuropathy, but it helped with itch with GD.
February to September of 2019 I had one smoothie per day. Then quit. The places had disappeared many months before but didn’t want to chance a recurrence. Started smoothies 2 weeks ago. Looking better.
Where do you buy it? And can I use it on my Tex-Mex food?😜
Sorry I wasn't specific. Flanax is capsacian and I buy the Flanax Linimento/Liniment, 2.3 fl oz small bottle on Amazon, it's around $7.00. This is a potent lotion. I use q-tips to get out of the bottle and wear protective plastic or vinyl gloves and apply to back torso with a long plastic spoon to my back or have your spouse apply with disposable gloves, Throw disposable gloves away. If you get this on your hands and then touch your nose, eyes or mouth the burning is awful. I see they also make an ointment. The bottle is small, but lasts a long time because it spreads easily. It doesn't irritate surrounding skin.
Don't panic when you feel the burn, it subsides quickly and I think it distracts the nerves so they don't itch as much temporarily. I do wear a cotton night gown and have never noticed residue on my linens.
I see they have tablets, but my derm recommended the topical.
I so hope the smoothies have the same benefit the second time around.
1)I bought 5 clumps of cilantro. Cut the excess stalks off. It then measured 52 grams. A measured 10 grams worth. Dropped in blender with 4 oz water. And drank it. Tasted ok. Should I use more. How much.
2)That aside, I had itch on belly. Not a show stopper. Nothing visible. Today more itchy. And I saw a small red dot. Because it was the friction that lit it up.Is that the normal manifestation? Just itchy, and then visible?
I used about half of a bunch, stems and all. Most use stems too. Adjusting amounts if bunches were small. I included plain whole milk yogurt, almond milk, stevia sweetener and frozen blueberries, banana or other fruit. Once daily. I could buy about 5 bunches if they looked good, wash, trim an inch off the stem, put in a jar or glass with a few inches of water, cover with a loose plastic bag with a few hole cut in it and change the water every other day and this would keep it fresh for a week. Once I learned that frozen worked just as well I could wash bunches, dry, wrap in paper towels then plastic bag and put in 1/2 bunch divisions in freezer so I wouldn't run out. Your issues are complicated with neuropathy and hand eczema which I doubt cilantro helps with. I was biopsied for GD and it came out negative, but I do have it, it just wasn't active when biopsied. While you have active and new outbreaks on torso it's a good time to be biopsied for GD.
Thanks for the heads up. Freezing 1/2 clumps sounds like the way to go. Biopsy now also.
1st 3 weeks this November when my initial GD was raging (chest looked like the internet pictures) and red dots all over. I worked outside in 60 degree weather with no shirt and no itches all day. Came in the house at 70 degrees all hell broke-loose. I put steroid cream front and back for 2-1/2 weeks. It was all gone. Unknowingly I used back of my left hand to get my back.. Hand skin got thin of back of left hand, and fingertips of my right hand. (steroid damage there) right hand finger tips split Fissures) and back of left-hand looks like 90 year old.
That aside; now I get itches in a few places but don't see any dots. Now, is that how it starts up? Plus when it does act up, how bad does it get?
Also, the neuropathy (noticeable) does not bother me.
With GD there are variations. Plus over the years the breakouts have some differences. Some with GD, very few, don't have the itching. My sister only has rash under her bra area and it doesn't bother her much. Yet her biopsy was positive for GD. I've told her about cilantro, but her itching is so minor she can't be bothered with drinking fresh or frozen cilantro.
I do know the cellular structure of our skin is changed. In GD areas the cells lose collagen and aren't tightly connected and no longer are an effective barrier.
You can look it up.
Each of us has various timetables. For me the initial outbreak was 1 year and then I had 6 months on and 6 months off. My first outbreak was the most extensive covering all of front and back torso and not only itchy but the most painful. Subsequent ones didn't cover upper front torso or up into my neckline on my back, I guess they felt better but the itching and pain was still awful. On the earthclinic GD site a man said his initial outbreak was going on for 6 years and then he did the cilantro smoothies and he went into remission. GD, aka, Transient Acantholytic Dermatitis has the word transient in it, meaning it comes and goes. Your initial outbreak was relatively short, if you do have a recurrence it may be short to. Some only have one initial outbreak.
During remission, after about 5 months I would feel it coming on as I would get a tingling sensation in GD areas that had previous activity. I would have a few scabs in breakout area that never changed even when inactive, in 6 months of dormancy they never would fall off and then the next recurrence would come and they would be lost mixed in with new. Same pre-breakout sensation was true with Allergic Contact Dermatitis, ACD on hands, I would get a tingly, not unpleasant feeling under my skin with no visible eruptions, but I knew it would be breaking out in a few days.
I'm still surprised at your side effects from using steroid for what I gather was a short period of time. I have heard of thinning and damage after years of use and I can see how the palms of my hands have thinner skin because I used steroids on and off for 10 years before I learned of the 5 Day Extended Patch test to diagnose allergens. Is it possible to get Dysidrotic Eczema, DE, on only one hand? What you are describing sounds like DE symptoms. Look that up on dermnetnz.com and look at photos. Your descriptions of the cracks and split finger tips is part of DE, one son has it but on both hands and his feet. He's lucky because with it only pain but not the itching. DE is a hard one in that it is not tied into allergic contacts, it's chronic and you know the side effects of long term steroid use used to control it. Also I have shared that I am allergic to one of the 5 classes of steroids and I wonder if you could have a steroid allergy and have ACD like many of us do with other types of eczema and yet with ACD, normally once you cease contact with an allergen the rash will heal within a month or two.
Last ditch resort I had to go to was an annual corticosteroid injection of Kenalog 40. Very potent and getting this injection too often can cause serious internal side effects on your organs. Annually was considered safe. It was supposed to help some with GD, in my case I didn't notice a change, yet with my ACD it dramatically helped my internal inflammation side effects of stinging, burning and itching inside my skin for my ACD.
However only 2 things have gotten me into my drug free state today.
1. Cilantro stopped my GD (for now)
2. Eliminate processed sugar free, limit natural sugar and initially give up all gluten. I've been on this anti-inflammation plan now for over 2 years and don't need steroids, topical or injections and am ACD symptom free. I had eliminated all the ACD contacts which is a must and I got no more ACD rashes, yet the internal inflammation was still present. Sugar feeds the yeast living in our intestines. They are alive and discharge waste though our intestinal membranes which thin with age. These pass though and into our bloodstream and our histamine army trying to protect us attracts these wastes thus raising our inflammation. You have to detox your body of yeast, starve it out. Yeast feeds on sugar and sends messages to your brain demanding it and that's why we crave sweets. Once starved out your craving for sugar ends. Great easy to year classic book written by a pioneer of tying in what we eat to many diseases helped me, The Yeast Connection Handbook, by William Crooke, MD. I will follow this plan for life. Living pain free is a tremendous motivator in having the will power to detox ourselves without any outside help. Rehab is not needed!
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@grovercleveland sorry to hear you have GD. I was diagnosed in summer 2018. I had a brutal outbreak. I had no prior medical conditions and did not take any medications, so I was convinced it was shingles or some other crazy infection. They were VERY painful and itchy ~ felt like neurological pain. I had it on most of my front and back torso as well as upper arms. I had rounds of steroids both oral and topical as well as antibiotics for suspected secondary bacterial infection. It was over 6 months before things settled down some but never went away completely. By early 2019, I joined @gardeningjunkie and @frogger as well as some others with the cilantro smoothies. I did them through early summer and had amazing results. I’m a nurse, so I was very curious as to why this was working. The only thing I could find was a connection to heavy metal detox. So perhaps there is some connection to GD and heavy metal build up?? Unfortunately, as you have likely discovered, this disease is not well researched, so the best information I’ve found is from others who are living this along with me.
Other things I have noted are similar to @gardeningjunkie ~ eating a diet high in inflammatory types foods (wheats, grains, pastas, rices, sugar, dextrose of any kind, and dairy) all seem to coincide with breakouts. Also the fabrics I wear can cause issues, so I try to stick to cotton and looser fit when I can. The last trigger for me is heat. I live in WI, so I do have seasons which is helpful. I love gardening, working in the yard, hiking and outdoor summer activities, so I have to be sure I take breaks to allow my skin to cool when it’s hot out, wear cotton and looser fit when I can, and stay hydrated. I only deal with very minimal outbreaks now as long as I follow my above advice. 🙂
Hopefully this is helpful to you. Best wishes on a recovery/remission.
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I have been symptom free now for months. I continue chlorella daily in my smoothie and add cilantro now, one month on, one month off. I have found that I am probably allergic to chocolate. I was eating extra dark chocolate chips as treat in evenings, my one indulgence. Had to stop that:( Also discovered I'm allergic to walnuts. I am thinking that any allergic / autoimmune reaction can be a trigger. What happens is that I get one spot that feels intensely itchy – like a bee sting. I use clove essential oil to get rid of it, but realize I have to find the trigger so I don't get a full blown reaction. My diet is entirely plant based now, except for non-fat dairy products, but that means I need some supplements, like vitamin K2, and some essential amino acids. I do use bovine based collagen/protein in my smoothie and Barlean's Omega 3 from fish oil, my concessions to the no animal rule, to get those essential nutrients. I avoid gluten, but do eat rolled oats in my home made granola, quinoa, and brown rice. It is absolutely impossible to avoid heavy metals – so periodic or consistent detox seems to be necessary, for me, at least. BTW, my plant based diet is really for my cardiovascular health and has nothing to do with GD. I was already on this diet when I developed GD, so I was already avoiding all processed foods.
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