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

I have been taking trazodone 50 mg for more than 10 years. It gets me to sleep, but doesn’t keep me asleep. I’ve been taking chlorphaneramine, an antihistamine, since GD outbreak, which helps me stay asleep, but when my GD got more aggressive, it wasn’t enough. Since taking lysine, rash continues to fade. Itching less, but not gone, but sleep through night with one application of Bengay at bedtime. To reiterate, since GD can wax and wane naturally, I’ll know more in about a week.

Some are born with a form of eczema, called Atopic. Like you I didn't get eczema until later in life at age 50. I now have multiple forms,GD being just one of them. Those with eczema are prone to getting multiple forms. You mentioned Seborrhea Dermatitis. Have you been tested for Allergic Contact Dermatitis, ACD which can cause itching all over the body and may or may not show a physical rash. That happened to me but the 5 Day Extended Patch Test identified my allergens so now know what to avoid
Do go see multiple dermatologists, I have been to over 7 in the 20 years since I started up with eczema and do learn from each. Also consider an allergist as they also can administer the 5 Day Extended Patch Test, the True Test Kit is popular and yes this test takes 5 days it is not the 30 minute environmental prick test. Google it.
Right now in remission with all 3 forms of eczema. Yet I always have a few papuales and scabs on my lower back torso even in remission, but not an issue. Our cellular structure has changed with GD.
Study so you know to ask the right questions to ask doctors. Always get second opinions but do not share what previous doctors tell you. I had a good derm who was treating me correctly for 2 forms of eczema and incorrectly assumed one new type I got was simply one of my previous forms.. Treatment all wrong. These derms treat hundreds of skin diseases and are more knowledgeable about certain type. I went to a new derm who took one look and identified it correctly.
Go to dermnetnz.org, their skin site is the most complete I have ever found, better than the NEA by far. Great photos.
I am definitely better with all eczema since I now follow (as mentioned dozens of times) the William Crook, MD The Yeast Connection Handbook diet. Please suffer though the detox period and then follow the maintenance plan, you will know within 3 months if diet makes a difference. So much easier to pop a pill or put on a topical- this diet is brutal! Yet for me the rewards have been great. I am leading a normal, controlled yes, but productive and happy life again.

I have been scared to go to an allergist thinking I will have to get off antihistamine in order to take allergy tests. Antihistamine has been the only help with the all over itch. I’ll look into the 5 day test. I did look into the book you recommend. Although, I don’t seem to have any symptoms of yeast over growth. The diet might not be too hard for me. I have cut out sugar and processed foods for almost 4 years now and only splurge minimally. Try to mostly do gluten free. I was tested for gluten and test was normal. I did take a blood test for common food allergies and everything came back normal. Doctors say it’s in my environment. I used to garden all the time but I now get itchy when exposed. Never used to be sensitive besides seasonal allergies.

You are following a sensible diet plan. Your eating plan now is basically the maintenance plan I follow. I also had no external physical yeast symptoms when I began but was desperate to help lower my inflammation.
Heat, sweat and friction are said to be triggers but for me my relapses would come about anytime of year and last for 5-6 months, often during the winter months. As a classic GD case my first outbreak was the most severe and lasted one entire year. I can only believe it is the cilantro that helped me. I thought I was getting my 6 month breakout after having 6 months off last March and the cilantro stalled it and then in several months with mild symptoms it was gone. My 5 Day Extended Patch test was negative for metals, but a $600.00 blood test not covered by my Medicare revealed allergies to 6 metals, so perhaps the cilantro working as a metal detox cleaned out the residual metals.
I did get the adult shingles vaccine mid Dec. Huge mistake, I thought I was getting a severe GD attack because although the rash was more plaque like than my typical individual papuales it was in the same area. I saw my derm who told me the shingles vaccine I got 3 days before this rash appeared was 100% connected to this outbreak which was probably shingles. It only lasted about 6 weeks and was advised to not get second shot of this 2 part vaccine. I am an active gardener, Master Gardener and am compelled to be outside daily. I have had to adjust my day long gardening fun in the summer and get inside by noon or earlier. If symptomatic with GD once I got hot and start to sweat the rashed area stings and burns and I am sure aggravates it.
If you believe your allergies are environmental (most of us have environmental allergies) see an allergist and at the very least get the 30 minute, immediate result environmental allergy test. Most of us have allergies to pollen, grasses, yes I have those and after testing learned why my uncovered wrists would rash up after gardening near cedar or juniper.
Our bodies change over time- although I have always had environmental allergies I never had the severe contact allergies until middle age; I now have allergies to rubber, adhesives, blended fibers, fragrance, cortisone, cinnamon and a host of other contacts. Once you identify your allergies you can control your environment.

I really appreciate the time you are giving in response to my replies. Its the most encouragement and treatments I heard since I was diagnosed. Thank you. I will consider seeing a allergist once this corona virus is under control here in California. As for as the cilantro goes does it have to be in a smoothie? I’ve been just adding fresh to salads or whatever I’m eating. I want to try Lysine. Seems not much in the side effects and seems safe. Since I’ve been so sensitive to everything I’m a little reluctant are you aware of any adverse reactions? Also try not to be in the heat like you said about gardening(I don’t even garden anymore 😩) GD has changed my way of life. Along with my love of gardening also enjoyed the outdoors in our pool and boat. I do less of it all now. Have you heard of success with GD using uv protection clothing? I used to get high anxiety when one erupted out of no where. Now yes I do get discouraged but try not to let it affect me unless it’s one of those crazy itchy ones then it’s more challenging. Recently also trying the witch hazel. I also wanted to mention that since its been spring like conditions here even just the sunlight is triggering the bumps. Makes me want to just stay inside but know that’s not healthy physically or mentally.

I researched safety. Here is an article specific to safety: https://pubmed.ncbi.nlm.nih.gov/30661148/

6 grams (6000mg) produced GI symptoms, but no serious or concerning symptoms. I’m taking 3 grams/day. I’m a tiny person -4’11” and 96 lb. I haven’t had any side effects, except suppression of GD. 🤞still. I mix in plain yogurt or smoothie. No strong taste. I can’t swallow pills.

After 2 months of the smoothies with no response, I stopped. However, after rereading two of your posts, I am going back to taking them as it really may take many months before they become effective. I mentioned above that two rounds of oral steroids did help, but the itching is back, although, not to the degree it was before. With respect to the smoothies I put a lot of fruit in them as well as apple cider vinegar and turmeric. Even if the cilantro doesn't work they're really healthy. Thanks for all your incredible insight and hopefulness.

I also have trouble with pills. If they are powdered capsules I just open them into a spoon and swallow with liquid. I also have a pill grinder. It reduces pills to powder. Available at any pharmacy. If the capsules are liquid inside, I just pop them in my mouth and hold my breath ! Good luck.

Re oral steroids – I was prescribed a "Burst" dose of Prednisone for a joint inflammation problem and found that eased my GD itching temporarily. May I ask if you could advise the medication name and dosage that you used.

I'll have to get the name for you on Monday as I generally don't keep the containers after I finish them. I can tell you that it was a week supply. On the first day, I took 7 pills interspersed over the day, the second day was 6, the third day was 5 and so on until the last day was one pill. I took two rounds of them about one month apart. The second round was more effective than the first for some reason. I stopped taking them about a week ago and the itching has resumed, at least not to the degree before I took the pills. I'm sure you know that oral steroids are only a temporary fix and can't be taken for any length of time due to the possibility serious side effects. I do use a topical steroid called Fluocinolone Acetonide. It has a limited effectiveness for me, but if there is one thing I have learned about this disease, it is that everybody reacts differently to different solutions. So, it maybe very effective for you. I have found that when the itching gets extreme, Witch Hazel, followed by Hydrocortisone cream, can be helpful. Gold Bond Ultimate Eczema Relief cream can also be calming. The reason that this site is so helpful, is that you learn about so many different options. Just keep trying ! Hope this was helpful.