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

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!

@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.

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.

Good Morning,

I'm curious about your plant-based diet. Would you mind telling me what an average day's menu consist of? Do you mainly eat vegetables?

Thanks,
bjbednarz

I'm glad you asked babbs this question. I can't imagine a plant based diet since I find that I can tolerate carbs, but only a limited amount. Legumes are a good source of protein but dried bean and soy I can't digest. I think without a diet heavy in meat, poultry and fish I would starve to death.

Breakfast: (All amounts are approx)smoothie with 1+cup non-fat Greek yogurt, approx ¾ cup kale (I buy organic chopped or organic whole and cut up myself and freeze for convenience.) Hand full cilantro (which I also freeze for convenience,) frozen organic mixed berries, frozen organic mango or pineapple if I can get it, splash of pomegranate juice, 2 scoops of collagen protein powder, a teaspoon each of histidine, lysine and chlorella, one capsule of vitamin C and once capsule of hesperidin (I can't swallow anything but the tiniest pills.) Some water. It makes a quart or more. Yes, it's a lot but it has to last me until 2 pm when I get back from the barn where I keep my horse. I'm out there 7 days a week. Lunch is 1 12-oz glass of non-fat milk, about 1+ cup of my homemade granola which consists of rolled oats, pumpkin seeds, sunflower seeds, and when I could eat them, walnuts. I use almond butter instead of expressed oil, and add honey and maple syrup, cinnamon (a lot,) vanilla and lemon extract. Dinner is usually steamed vegetables with rice or roasted sweet potatoes. Or I make a curried lentil soup with wilted spinach. Or I do something with tofu and vegetables. Or I make a salad with a whole avocado. My brother uses zero oil to sauté vegetables, but I use either canola oil or camellia oil to coat my carbon steel pan, wipe out any standing oil. It works like a non-stick pan. I like my mushrooms sautéed, or occasionally, I want a crispy outside to my tofu, or I sauté mirepoix for soup. This is not just a plant based diet, but also a very low fat diet. Vitamin K2, vitamin D, and of course, essential fatty acids 3 and 6 need to be supplemented because they are oil soluble. My snacks are bananas, apples or pears, and Larabars (cherry pie my favorite and no walnuts.) I did love my dark chocolate treat, but, oh well.

With your active lifestyle I am amazed that you get the stamina you need from your diet. I am sure it took years of trial and error to tweak what works for you. Can you tell us again if this is based on a vegetarian philosophy or if your inflammation was raised eating animals. I see you tolerate dairy, but do you eat eggs? My uncle was a vegetarian and allowed himself dairy, cheese and eggs, as he put it, he didn't feel bad stealing from the animals he just couldn't justify their killing.

This is probably TMI, but it was not philosophy, but evolution that brought me here. I'm 73 and when I was young we had meat at least 6 nights a week and fish once a week. As I got older, I noticed that meat and chicken didn't taste or smell the same as it used to. I think by the end of the 70's or early 80's I noticed I couldn't stand the smell of either. When I was young, all meat was grass fed or "free range." Maybe that was the reason for the change, but it just was a sensory thing, not a philosophical thing. I still loved fish. Then fish was farmed and the taste also changed. I still eat wild caught salmon in the summer when it is available, but I can't stand the texture of previously frozen fish. At that point, I was still eating eggs and cheese.

Then, a few years ago, my younger brother was diagnosed with coronary artery disease. He had never had a single symptom of CAD, but his doctor did a scan for calcium in his arteries, only because his cholesterol was a bit high (not alarmingly high.) If you have a calcium value over 100, they put you on statins. His was 4000!

I told him about Nathan Pritikin who, in 1957 was diagnosed with CAD and they ultimately wanted to do bypass surgery on him, when that procedure became available. He refused went on a (virtually) no-fat, vegetarian diet. In 1984, he had a recurrence of leukemia (which had first been diagnosed in 1958) and when he was in the hospital, he committed suicide, choosing to go out on his own terms, and an autopsy showed he had completely clear arteries. In that way, he served as his own control. My brother decided to go on that diet, but added wild caught salmon. He eats egg whites, but not yolks, and no extracted oils, only those inherent in nuts, seed, avocados, etc. He also eats gluten. When he told his doctor what his plan was, the doctor said that won't work. My brother ask why not. He said because nobody actually does it. My brother said, "But I will," and he did!. When he went on this diet, I decided to decrease the fats I was consuming: no egg yolks, no extracted oils (except to coat my steel pan) and no cheese. I spend a lot of time doing dietary and medical research and have determined that this diet is missing some important elements, such as the fat soluble vitamins I mentioned in the previous posts, and essential oils. I am supplementing as needed. My husband does not adhere to this diet but he is on a restricted salt diet - I find that a lot harder.

Regarding your question about inflammation, by inflammation marker was <0.1mg/dL - low, even before I stopped eating eggs and cheese. These numbers were from 2 years ago. My HDL was 82 and my LDL was 92. My triglyceride was 128 (should be under 100). I should be tested again since I made dietary changes but I won't go into the clinic needlessly during the pandemic.

As an aside, if you look at the Pritikin Center website, they have softened their own guidance to include small amounts of animal protein. But they warn of the dangers of olive oil consumption which surprises a lot of people. I follow the old school diet.

There's a lot of research demonstrating the "health" of high fat or even moderate fat diets. Cardiologists consider it bogus propaganda drummed up by the egg and beef industries. None of the research demonstrates the end result of my diet, because, as my brother's doctor said, it would be nigh impossible to get compliance. Instead they look at various polyunsaturated vegetable oils as substitutes for saturated oils.

I'm not recommending other people do this. It's not very much fun.I don't drink, don't smoke, and now...no chocolate. Physical activity is an important pleasure. At the barn - I'm in a covered, but still outdoor location (open on 4 sides.) Besides caring for my horse, I also feed lunch and water all 17 horses in the barn. This has helped me stay active during the pandemic. I come home and usually go on a 3.5 mile hike including some steep hills. When weather doesn't permit my walk, I do a workout on a Bosu (like a step aerobics workout but on an inflated half dome instead of a step.) I have no lack of energy.

I think we all spend a lifetime finding what works for us. I don't think there's a one size fits all when it comes to diet. True confession: when I travel with my daughter (which I haven't done since pandemic) I am lenient. When in Capri, how could I not eat torta caprese! I also cheat when I have company for Jewish holidays: Rosh Hashanah and Passover (also cancelled during the pandemic) when my friends insist on having my brisket (and then I make torta caprese for dessert - I had to share that pleasure with my friends!) Told you - TMI