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

This is cynical, but I believe the dermatologists I go to are uninterested in our home remedy treatments which for some of us have worked because these are not prescriptions and because no scientist has studied them. I wrote up a record of my success with cilantro: dosing, describing the length of time it took to go into remission. I also included others success stories from this site as well as the Earth Clinic site. Even though she tells me she only sees a few cases of GD a year I thought she would be excited and would share this information with other doctors.
I went back in 6 months for a non GD issues and saw her husband (both are dermatologists). I asked him if he had heard of others having success using cilantro to treat GD. He had no idea what I was talking about. Evidently his wife had never even discussed it with him or had him read what I wrote up. You might question why I still use her, but to her credit she was the first doctor out of several others that I had seen that figured out that I had GD. She took one look and recognized it, others were treating is as Allergic Contact Dermatitis. Not that any of her classic GD treatments helped but at least now I had a name for this rash and could research it.

My GD was diagnosed remotely by dermatologist. My GP is always interested in my solutions to any problems which I or my husband have. She always writes down to look up. I haven't solved my GD yet, but to date, clove oil has kept it at bay and kept me functional. I still have to use 3 x day which is discouraging. I tried the Gold Bond Extra Strength powder today and was quite miserable in short order. I use extra strength Bengay for extreme itch relief. (Only need once in awhile now.) It has 10% menthol, 4% camphor and 30% methyl salicylate (relative of aspirin) the Gold Bond powder lists .8% menthol as well as zinc oxide, acacia Senegal gum and Eucalyptol, as well as methyl salicylate (doesn't say how much of the latter ingredients.) The Bengay gives me excellent temporary (hours) itch relief, but no effect on the rash. I prefer an MD who admits he/she doesn't know as opposed to giving advice that it misguided and throwing medication at a condition like throwing spaghetti on the ceiling to see if it sticks. Still waiting for my Far Infrared Sauna to arrive. I was impressed by the derm who referred his patient to this site. You are all life savers. Having worked as a physical therapist for most of my life, I have found that many doctors don't diagnose problems they can't fix, so it's a help to have a diagnosis of Grover's Disease if only to get to this site.

I will now add Bengay to my endless list of creams and ointments. My out breaks have changed strangely. They used to be pretty much on my back and shoulders. Eventually they would disappear, only to move around to different areas. Now they have localized on my stomach, two very distinct rashes, and the itching is really intense, far worse than before. The discomfort is worst in the morning and just before I go to bed. Gardeningjunkie explained the reason for this several months ago. Also any contact with clothing, cotton or otherwise, seems to initiate and prolong it. I tried the Goldbond as well. Very temporary fix for me. Still do my smoothies once a day, religiously read this site, and pray that someday, someone will come up with a miracle, so we can all go back to normality. Lol. I thank everyone on this site for their input. We really are in this one together.

Unfortunately, many doctors in this country, have taken on the persona of gods and are often arrogant about issues that don't concern them, or diseases they are somewhat unfamiliar with. I was seeing another derm for a separate issue. After several prescriptions that didn't work, he prescribed Restelin (?) at $300 a pop. When that didn't work, he said I just needed more of it. That's when I went to a third derm who took one look at it and gave me creams that immediately eliminated the problem. My pcp Knows nothing about GD, but at least he listens to me and did suggest that I see an allergist to cover all bases. The allergst was fascinated by the cilantro smoothies. In the end, we appear to face this thing on our own to a great degree, hoping that someday someone in the medical field is empathetic enough to take the disease seriously.

It's nice to learn from others with their experiences--- appears that the symptoms and effective treatments vary much. My rash is confined to the torso all around and the intensity of itching changes frequently. Have been encouraged with the Witch Hazel, but it does not always eliminate the worst spells. One night I could not sleep for the itching and applied light coating of a generic 1% hydrocortisone cream which got me through the night. The dermatologists here in AZ seem mainly devoted to skin cancers and GD "is a rare disease w/ no cure"

I was initially diagnosed with a rash & itching characterized as GD 2 years ago, however was inconsistent with other symptoms such as itching with no rash, and from head to feet. The itching was maddening, and nothing worked to sufficiently reduce the pain & itching sufficiently to sleep more than an hour at a time. The rash, where it did occur, seemed to morph into Eczema-type characteristics, and my Dermotologist suggested I try Dupixent. I can tell you this was a game changer, after 5 weeks of being on it, the rash and itching was 80-90% abated, and feel normal again. I’ve been on it for 3 months now with no side effects. My Derm told me there would be several other new biologics coming to market and hopefully might offer others the same type of miraculous results Dupixent gave me.

jameswb- did your derm tell you that you have several eczema types? I have had/have 3 types including GD, all i 3 n remission right now. I have not heard that GD was helped by Dupixent. If and when you go off Dupixent because of side effects or other reasons don't discount dietary changes. Giving up processed sugar and limiting natural sugar and gluten have made a dramatic difference in eliminating my internal burning, itching and stinging that I had which sounds similar to the no rash with itching from head to toe you had.It's been gone now for over a year. Before I gave up these foods I required cortico steroid shots to control it and they are not a solution, they just treat symptoms.

I now have 6-7 tubes of generic hydrocortisone ready to go, one in the car. I don't even think about using it when the itching starts. It does work, but only for short spells.

I’m having trouble wearing most of my clothing and undies, bras as they contain some Lycra or spandex and seem to trigger itchy rashes and outbreaks. Very frustrating and hard to find all cotton. Keep applying steroid cream betamethasone.

I used to think I got heat rash under my bra, but turns out I had rubber allergies and then developed GD. Steroids never helped me in this area. Even if steroids help temporarily you are only treating the condition and not stopping the cause. Yet, steroids had been a life saver for my ACD before I learned about testing. Many of us have multiple types of eczema, if you have GD don't assume your rash is only from GD, it may be from Allergic Contact Dermatitis, ACD. Get the 5 day extended Patch Test, google True Test.
Cottonique has some 100% cotton undies and bras along with latex free elastic undies and bra and other very soft 100% cotton items. Well made but no glamour and if you are large breasted the elastic free bras offer limited support. Some I know has success with their bra liner, it has a small band of latex free elastic in a casing at the bottom. Women wear these under their bras, yet even that doesn't help me as the elastics off-gas. I not only have GD but ACD and tested positive to an element in rubber with is used to synthesize blended materials like elastic. What I do is remove the elastic at the bottom of the bra liner and expand the casing with a soft 100% cotton knit and run one of their draw strings though the bottom and can wear this as a bra because I am small breasted and support is not an issue. Also their front tie 100% cotton bra has some support because of the shaping, but as it is seamed and a bit lumpy it works if worn with front button or snap shirts which are loosely fitted. Camp type shirts which are 100% cotton or polyester with 2 pockets are the best for camouflage. Columbia makes a few 100% polyester 2 pocket camp shirts which are more tailored and feminine. Really great for my casual lifestyle now retired. Just always read the fabric information as Columbia also makes blended fabric clothing. I wear lots of these camp shirts. I used to think I got heat rash, wrong. I have zero rash in bra area now from ACD and my GD has gone into remission because of the cilantro smoothie detox we have been talking about since the end of March 2019.