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

Just be aware that your GD must be in the active stage for the diagnosis to be correct. It took over a year for a derm to finally guess that I might have GD and by then my 1 year outbreak was calming down. My papuales, front and back of torso, upper and lower torso with only the sides clear were crusted and falling off at that time. My diagnosis was negative, but there was no doubt in my derms mind or mine after doing research that is was GD. I had 6 months of calm and then it came back and both derm and I decided not to bother with biopsy. To give any of you hope, each recurrance only lasted 6 months, giving me 6 months off and each time it was slightly less severe.
Because of cilanto I'm still free of GD doing all my regular outdoor activities!

What I do: I buy several bunches of cilantro, cut off the bottoms where the dirt is, clean thoroughly, divide in half, put in freezer bags and freeze. The smoothie is honey, flavored yogurt, a bit of juice, some diced up fruit, and the frozen cilantro, sometimes an ice cube. Bananas are great to help negate the cilantro flavor as well. The pills are useless. Your recipe is up to you. I blend it on high until the drink is really smooth and their are no big hunks of cilantro in it. Actually can taste pretty good once you get it right.

How are you taking cilantro, pill form or smoothies?

A lot of folks, myself included, are doing cilantro smoothies. The recipes vary. Mine is:
Unsweetened coconut milk
Vegan protein powder
Collagen powder
Tablespoon of almond butter
1 bunch of cilantro
A cup of spinach
1/2 cup of blueberries
1/2 cup of raspberries

I’m not saying this will be for everyone but I also just finished a 30-day detox guided by my functional medicine doctor, including 3-days of a fasting-mimicking diet. I had to drop gluten years ago but have also eliminated all refined sugar, dairy, and grains. It’s not purely paleo but skews 75% vegetables with generous servings of protein, oils/fats (avocado, olive, coconut), protein (I avoid beef but not bison), legumes, and some nuts/seeds and fruit.

Generally, this takes will power. But I feel good, my athletic performance hasn’t dipped, and it certainly isn’t making things worse. I only have fading brownish, flat pigmented spots and a few tiny brownish crusty ones. Is it just fading on its own or is the cilantro and my diet working? Only time will tell.

Oh yeah — and Grover’s itches. Except when it doesn’t. Mine does not. It seems to be a personally-specific problem and everyone needs to find what works best for them.

Best of luck to everyone!

How are you taking cilantro, pill form or smoothies?

Question: Has anyone here tried Metal Magic, which has cilantro and chlorella? The "fresh" cilantro I can buy here is usually shot through with rotten leaves as well as dirt, and takes forever to clean – I tried consuming at least 1/2 to 1 whole bunch every day for a week, but it was taking up too much time.

Fwiw, I've been suffering from GD more or less steadily for 2 years. My case is biopsy-confirmed, and blood and patch skin tests revealed no significant allergies. My GD manifests differently on different types of skin (assuming it's all the same thing). It started with itchy eyes and eyebrows and has worked it's way down: first rosacia on my face, then itchy neck with redness in the horizontal creases of the neck, then itchy bumps that tend to scab up on my shoulders and back, then bumps on my chest, then the same itchy redness in my armpits, then bumps spreading down my arms, with more of the itchy redness on the insides of my elbows. The armpits and elbows quickly become much more itchy if my arms are in a position that closes those areas off from the air – honestly, I've wondered if it were something fungal; they're better if they stay dry. On drier but tender areas on my arms like my inside wrists, fine, short little scabbed lines will appear in the fine creases of the skin.

Sometimes the itchiness wakes me up in the night. The areas colonized earliest remain bumpy and itchy, but tend to be less so. As an outbreak starts to resolve, I seem to be left with a few new little tiny warts or skin tags that remain very itchy.

Heat and clean hot water don't seem to bother it, but sun and sweat do.

The only things that have really seemed to help are witch hazel, prescription strength cortisone; they usually tame the severity a bit and temporarily ease the itching, but they don't eliminate it. I do use a bunch of other stuff but am not sure they make much difference; and some things docs prescribed seemed to make it worse. I have not tried the light therapy, and my doc has never mentioned it (he is the 2nd derm doc I've seen; the first refused to even look at the rash).

It seems clear the docs have no idea what's really going on; and I'm not convinced this is really a singular disease, or rather some kind of deterioration in the skin's defenses or ecology that makes it vulnerable to more than one type of breakdown or attack.

Great recipe. Mine was similar.

unsweetened almond milk
probiotic whole milk yogurt
collegen powder
1 packet stevia (only sweetener allowed on my plan)
1/2 bunch fresh or frozen cilantro
1/2 cup fresh fruit or frozen banana slices (I would like to add more fruit but my anti inflamation diet even limits natural sugar)

What grains besides wheat do you avoid?

Itching is the worst part of GD as one can cover up our torso. I know you count yourself lucky. Do you get the pain from pressure of any kind. I could not lay on my back, even to lean back driving a car because of the pain. To lay down I could only do it on my side.

I agree with you, you have more going on than GD. I have 3 forms of eczema including GD. Seems like you have had many tests. You mentioned patch testing. Was that the 5 Day Extended Patch Test and if so how many substances were checked? What type of blood test? What did it check for. My Medicare wouldn't cover my blood test (they did the Patch Test) so had to pay out of pocket $600 and that test showed allergies to 5 or 6 metals with the most severe aluminum and nickle. It didn't even test for mercury.

Has anyone suggested you have Atopic Dermatitis, so many of your symtoms sound like others with Atopic have. I have or had 3 forms of eczema and Atopic is not one. Maybe you could start a discussion asking for those with Atopic to share there symtoms with you. Dupixent seems to be the miracle drug for them.

I have been to many derms and an allegist over the years and I learn nothing from some, but have learned much from others. My suggestion is to keep searching for a good doctor. Perhaps you can mention your area in a discussion and ask others if they know of a dermatologist who is knowledgeable about eczema. So many today just want to sell face rejuvination where the big money is.

I'm glad your reaching out on this site, keep it up as I know first had blogging has provided me insight I never got from doctors.