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

I have read for some it is possible to have only one outbreak. So lets hope that is your case. My first outbreak was 1 year and this is not unusual. My pattern had been 6 months on and off after initial year, but cilantro stopped my last outbreak. I am hoping for you that your initial outbreak is finishing. For many, including me, the 1st outbreak is the most painful, itchy and extensive. So sorry you can't try the cilantro, but you can hope that if you do have a recurrence it will not be as violently severe affecting your every moment.
I image you have explored with your doctor increasing your dosage of blood thinner and with that perhaps ingesting a small amount, 1/2 a cup of cilantro and have your blood monitored. Most of us ingest more, but perhaps it is unnecessary to take in so much.

Metals- Heavy metal build up could have contributed to me acquiring GD, although if you read the New Zealand Derm site list of commonalities for GD, out of the 5 (metals never listed) I had 4. The fifth is that this is predominantly a males disease. I had recent blood testing for metal allergies concerning a possible knee replacement. I tested positive to 5 metals, so there is not a knee replacement with metal parts that my body wouldn't reject.
My True Test 5 Day Patch Test panel showed zero allergies to metals, yet my orthopedist said the blood test is more accurate. I can see the reaction I have to nickle because in the past wore cheap metals in jewelry containing nickle. That showed up in the blood test but not on the patch test, strange.
I had these blood and patch tests 2 months after I began the cilantro treatment. I don't know of others who have had this blood test for metals that have GD, so a metal allergy may not be related even though cilantro is a know heavy metal detox, could be something else in it, the vitamin K?
Healing time- I was only 1 month into new break out when I learned about cilantro from Kimass1. In a week I could see new papules weren't developing, stalling and the itching wasn't progressing. A first. Then it simply smoldered for weeks. It took over 2 months for scabs to begin to loosen, but by then no itching and never was painful. Pain being my normally worst symptom. Now 4 months later I still have a few scabs on the lower back that simply hang on. I can wash them off in shower but they will scab over again. Yet zero itching or pain and the constant feeling of a sunburned torso left after being on cilantro for a month. You may have nipped your breakout in the bud like I did. Even the little under the skin bumps that have always been with me even when dormant because of the cellular structure changes due to GD are hardly noticeable, still there but the size is teeny tiny.

Gardeningjunkie I think you are fabulous. And to all of you thank you so much for helping me get through this. Your knowledge gave me hope and power to keep trying new things and pushing my doctors to hear what I was saying. At the beginning of my Grovers story I received a biopsy report that said “probably” Grovers disease. Would a doctor tell you “you probably have cancer” That word probably did not sit well with me and then Frogger told me they have a definitive test for Grovers, next biopsy no probably, definitely Grover’s. I’m hoping this is the end to a very horrible time I’ve had in my life. I know I Have to continue a cooler way of life, but boy do I miss a nice hot shower!! Now, any helpful hints on getting rid of the dark spots that have been left behind. 🙏🏻

Good morning! I have both an update and a question to share today. My update is that my dermatologist agreed last week that mine is not presenting as a "normal" case of Grover's, though it was confirmed via biopsy. She is having me do a full blood workup and 24 hour urine analysis. Results expected by the end of this week. In the meantime (and this ties into my question), my symptoms on my trunk have subsided tremendously compared to a month ago, BUT my legs are more affected now and the palms of my hands. All the reading I've done on Grover's indicated that the palms are always spared. Have any of you ever had symptoms on your palms? This is both palms, going from my wrist up to the middle of the underside of my thumb.

Good morning april fool. My dermatologist said the same thing in my case and ordered blood work to rule out multiple myeloma and lupus. Thank God both were negative. I sometimes get itchy, red palms. My scalp has been itchy for 1 1/2 year. Back and chest are better after a horrible outbreak last November that led to my diagnosis by skin biopsy. Now I break out behind my knees, itchy ears, a little on my calfs and other random areas. I have tried a wide variety of creams, everything from Sarna to Butt Paste and only get temporary relief, at best. I won't take steroids because I had a terrible reaction and GD came back with a vengeance. I love cilantro smoothies but can't say they are making any difference. Same for AIP diet, detox fast and gluten, dairy free diet. If I get a scratch or bump into something, my skin starts to itch. Just bizarre. My doctor suggested buying Cere VE in a tub and mixing prescription liquid Corbetsol in it so I get "a whiff" of the steroid on my skin. It is nice, but again only temporary relief. My doctor keeps saying it will go away on its own. I'm still waiting. I have read on this site that although GD is usually confined to the trunk of the body, that is not always the case. Also, some say this is an autoimmune condition but my doctor just says they don't really understand that much about it. Any opinions? Sorry I don't have any great remedies to suggest. Good luck to you!

I assume you have had the 5 Day Extending Patch Test for Allergic Contact Dermatitis, ACD. My initial form ACD began just like you described, itchy red palms and scalp. I would pull my hair to stop the itch and my husband kept warning me I would go bald. Turns out that was ACD. Because of the patch test learned what contacts to eliminate from my environment and have that under control. Had to toss out 98% of grooming products, clothing, linens, change furniture, mattress, pillow, shoes, cleaning products and more. Zero hand eczema and scalp normal. After ACD I developed Grover's along with another form of eczema. Eczema is an auto immune disease and those of us with autoimmune diseases usually have several. Also although much improved eliminating contacts still had issues to a lesser extent and finally made the sacrifice of diet alteration. Basically no processed sugar and limited natural sugar for life. That turned the corner for me. Dr. William Crooks book, The Yeast Connection Handbook motivated me to try his plan which helps with eczema and chronic yeast issues. Simply, easy to read.

Many of us with eczema have multiple forms. This is common with autoimmune diseases. I have 3, Allergic Contact Dermatitis, ACD and Grover's Disease, GD and have also have had Perioral Eczema. My first form was ACD and began as hand eczema. Have you had the 5 Day Extended Patch Test to diagnosis any allergens? My grooming products and dish soap and other cleaning products triggered my hand eczema as well as adhesives. I had Scotch Guarded some chair pads which triggered my first outbreak, very bad chemicals in Scotch Guard. I can't even sit on it when dry.
Also GD biopsy must be taken at a specific stage to register. My biopsy for GD was at the end of my initial 1 year break out and was negative. I am a classic GD case and have no doubt I have this form. For me the cilantro works. In 4 years it's the only thing that worked. My derm offered to do another biopsy if I want it, but I I have no doubt I have GD.

@aprilfool As you may have read, I also have a rash that does not present like Grover's (those red itchy Grover's bumps have gone with the Cilantro) However, My initial rash started on my head and I did have what looked like a hive(ish) rash that accompanied the Grover's as it progressed. All of the rashes left me for about a month or two (with the exception of the itchy bumps on my head) after starting the cilantro. However, the hive like rash re- appeared. It started really small and gradually built up to where it bothers me quite a bit now. It travels. Some days on lower legs, others on upper thigh and buttocks, others on back and arms AND I would also get itching on my palms. I could see tiny little bumps on my palms (no color) that itched like crazy. My chest and neck also get red and it feels like it's on fire, and I get almost a blister like outbreak. It's weird! I have been trying to figure this rash out for a little while now. Derms have no idea, and say it does not present like Grover's, but since I was diagnosed with Grover's through a biopsy, some think it still may be just that. Others think it's another form of eczema others thought it was hives. So I have no REAL diagnosis for this issue. Just Doctors throwing Prednisone at me and shooing me away. I thought it was an allergic reaction to the yogurt I added to my smoothies because it got better (almost gone as soon as I stopped using the yogurt.) But the last two days it has come back strong! I have not done the 5 day extended patch test because my derms don't offer it and from what I am told it costs over $1000, so I have put it off. I have NEVER been allergic to anything prior to this and I never had issues with rashes before last September when this all started. (I will be 56 in October.) I am going to set up an appointment with the Mayo Clinic next. I have to drive about 5 hours to get there, so it may be a while before I can get in. Until then I am going to keep trying to figure this thing out.

I had a 3-day patch test as well as needles in the back. The only things that showed up as allergies are scallops and dust mites. Dr. said those are not likely causing my GD. They would more than likely cause asthma. Is the 5-day patch test more thorough? Dermatologist thinks I have something going on besides GD. Come to think of it, I did have personal dermatitis around five years ago.

Seems like you know for sure you have 2 forms of eczema and Contact Dermatitis, CD, is closely related to Allergic Contact Dermatitis, ACD, the symptoms are just are delayed. Also with ACD it travels thought the body. You could be sleeping on a memory foam pillow for example and memory foam is made with an element from rubber, unlike polyurethane foam which isn't, the memory foam off gasses though your skin and you could react internally throughout your body if you have a rubber or rubber element allergy. I know this happened to me. My new memory foam mattress turned out to be killing me. It sounds like your doctor ordered many tests, but I am still confused. Did you Google the 5 Day Extended Patch Test? What was the name of your test kit? How many test sites? Perhaps some kits test in fewer days than the TrueTest. Normally application is day one, then day 3 1st reading and day 5 2nd reading and removal. Many allergens don't show up until day 5 and for some folks it's left on even longer. The patch kit test for chemicals and natural elements like rubber, preservatives, adhesives, fragrance, and so on it doesn't test for scallops or dust mites. The environmental tests, test for dust mites, pollen, grasses, mold, pets and such and that is a simple 30 minutes skin prick test done in the allergist or dermatologists office while you wait. If you are not sure if you had an extensive patch test kit, like the True Test, call your doctors office and ask for copies of you test, even if results are negative. My original testing was for about 78 sites, but recently had a metals panel done, another patch system of the True Test which wasn't run before. I keep records of all my test results positive or negative.
From what I know your doctor is right thinking the scallop or dust mite allergy isn't effecting your skin. I also have environmental allergies, have had these since childhood and antihistamines help with my symptom which is hay fever.
When our histamine level is elevated in our bodies it's easy to test. My derm told my husband to watch as he took a retracted ball point pen and very lightly wrote my name on my back. I had a red welt with my name showing.There is actually a medical name for this happening. Sounds like it is happening to you. I am wondering if elevated histamines are the cause of your reaction to getting bumped (your bodies histamines are fighting to rid you of something upsetting them and they are over producing).
As I mentioned there are many types of eczema and so diagnosis is not that simple as some of us have multiple forms with overlapping symptoms.
The New Zealand Dermatology site is the most extensive I have found in my searches, it actually lists GD which even the NEA site doesn't. Go to this site and study all the photos of any type of eczema that seems related to your symptoms. Study the photos, very graphic and many rashes will be far more severe than you have, but keep looking. That is how I figured out I had Perioral Eczema. I was helped by a blogger who shared about Perioral (I had never heard of it). Originally derm told me I had Rosacea or perhaps ACD issues (I had eliminated all my allergic contacts). Anyway after searching pages of photos of Perioral, bingo I found a rash just like mine, same location and appearance. I copied all info and took into her and she looked at it and said "Oh yeah that's what you have". Still I forgave her treating it incorrectly as she is the only dermatologist that told me my torso rash was GD, others had been treating it assuming it was ACD.
Right now, if not using already, order Grandma's Bar soap for Face and Body, previously known as Grandma's Lye Soap. Only 2 ingredients: lard and lye. Lye is transformed into glycerin in the old fashioned soap making process so all you contact is lard (moisturizing) and glycerin (moisturizing). I don't know anyone allergic to it. I keep a bar at each sink and shower and when at my worst wash my hair with it (works best for hair with soft water). Once I got my scalp calmed down I searched with my CAMP list from my True Test kit and found a safe shampoo for me. Safe doesn't mean it will work for me, as 1/2 of the items recommended should work but don't. So there are more allergens I am unaware of that I haven't been tested for. Yet the VMV Clark Wash is safe for me.