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

I saw my dermatologist who was very interested in the cilantro treatment for Grover's that's helping many of us. Frogger, MarianneJ and Kim's history on cilantro I included with mine, along with copies of the earthclinic Grover's Miracle Cure blogging site and this site. She has only a few Grover's patients a year and seems interested in cluing them in to this treatment. I'm still symtom free and exposing myself to heat and sweat.

I’m having some rash symptoms after running, mowing lawn etc every week in Texas heat BUT no itching. Cilantro is a godsend. I’m not going to let the Grover’s win.

@grandturk67, I am a volunteer mentor, and I just came across your post about starting a new discussion. @gardeningjunkie, Thank you for being on top of sharing your how to begin a new discussion.
I would like to jump in here. I want to share the following link to Connect Pages > About Connect: Who, What & Why About Connect
You will find step by step instructions under How to Get Started.
https://connect.mayoclinic.org/page/about-connect/tab/aboutconnect/
Let me know if you need help.

Frogger I am bummed that your rash symptoms are beginning. Have you thought of adding the amount of cilantro you intake? I 'm pushing my luck and gardening until 11:00 and do get sweaty and heated. I am so loving my freedom from Grover's symptoms. Yet so far no issues and of course still drinking a giant cilantro smoothie, but may skip one day a week. Next season plan to add many plants to my herb garden as others say it does well here in the Ozarks.
I have made a point to give my skin a break every other day staying out of the heat hoping that gives my skin time to heal any damage I have inflicted.Have you been out in the heat daily? I know Texas heat; when first married and my husband was in the Air Force we lived in San Antonio and Lubbock. My son and grand-kids live in Dallas area, Argyle and have to say that summer heat and humidity can drive me inside even when skin is in remission.
My fear is that cilantro is just a temporary fix and can only hold off a new outbreak temporarily.

Thanks but rash symptoms do not bother me as before. I have no itching and it doesn’t appear as red as in January and February. I may up my cilantro intake and thanks for the concern!

At least with Grover's most of us can cover up our rash, so that's not the main problem: to be free of itching is a victory.

Exactly right. I cannot see the rash on my lower back but it would drive me crazy if it itches as it once did.

Group, I have just spent the better portion of my day reading this feed from beginning to end. This group seems to be, by far, the most supportive and well-documented of any I've found so far. After three months of intense full body itching and misery, I received my diagnosis of GD a couple of weeks ago via punch biopsy. My primary care doc kept saying "poison ivy" even as it spread from my torso to my arms and legs over several weeks. Two rounds of oral steroids and two creams (that didn't work) later, I landed in a derm office and she couldn't believe how bad it was (and all she looked at was my back). Her expectation based solely on observation was that it would be mastocytosis, so GD was a surprise to both of us. I am 44 and live a very active, healthy lifestyle. I have had to give up nearly all of my outdoor activities, especially running and cycling which I have competed at for nearly 20 years. Ugh...that's the toughest part for me. I have an indoor bike now, but it is not the same. Since diagnosis, I have been on the heavy steroid cream as well as zyrtec and hydroxyzine, which helped with my back, chest, and stomach, but not my arms and legs. I even have some itchy spots on my forehead and chin now. I just bought some cilantro tonight and wish I could fast forward a month to see if it works for me. I also have my follow up from the biopsy tomorrow. I think I may have her look at my arms and legs while I'm there since she focused on my back last time. Should I push for a biopsy of that, too? Also, has anyone experimented with a collagen supplement? I'm seeing a lot of that advertised at Whole Foods and Sprouts as "great for skin." I'm wondering if over time it could help it heal?

I too have found most doctors have never heard of Grover’s. However my dermatologist was quick to run 2 biopsies and give me the diagnosis. But this group is most educated on subject. I told my dermatologist about cilantro and he was surprised at how it worked. But Grover’s has kept me from training and competing (running-Masters Track) since January. I have just resumed running. It was longest hiatus in 43 years. Still taking cilantro and maybe someday may get off the daily routine.

On this site we totally understand your misery and search for treatments or lifestyle changes to help.
As you have read cilantro, which I learned about on this site from a fellow blogger, thanks to Kimass1 and her Wed Feb 27th post, has not only helped me, but cleared me of 99% of my symptoms and the only treatment that helped. It sounds like you are experiencing your initial breakout. Normally the first breakout is the most severe and the longest lasting. I have read from one person who was dealing with a 6 year initial breakout, but I followed a more normal course of a 1 year break out. I was beginning year 4 with Grover's and a new breakout period so my rash symptoms were in the early stage when I started the daily cilantro smoothie. I noticed my breakout stalled in less than 2 weeks and I never got the extreme pain or any pain and only a mild initial itching that was gone within a month. Still the scabs held on for months. It began in the lower back and never advanced to the upper back and only had a few on my belly. I have never had it on my arms or legs, as this advanced form seems to be less common. Since you are severely broken out and in the initial outbreak stage it make take longer to notice any improvement, so don't despair and keep this cilantro smoothie going for at least 3 months. Now 5 months later since drinking my daily smoothie I still have a handful of scabs that fall off only to return, but no pain or itching. Most scab scars have faded. You read that most of use fresh, but frozen also has helped some. Tips on how to keep it a week are in our blogs.
You mentioned collagen, ours has separated and no longer holds our skin cells together in our Grover's regions. I believe this cellular restructuring is permanent and we no longer have our skin protecting us like it used to. Cilantro will be a temporary fix I believe, as our skin structural damage is permanent. That's why I plan to drink this daily for life. Right now you are trying any treatment you can, so it will be hard to tell if the collagen treatment is helping versus other treatments like cilantro, but you are doing what I have done and others desperately grasping for any help trying to get our normal lifestyle back and most importantly be pain and itch free. While your doctors were treating it incorrectly as heat rash, mine considered it a symptom of my initial form of eczema Allergic Contact Dermatitis, ACD. I would suggest the 5 Day Extended Patch Test for ACD, because I have both forms of eczema and they can have overlapping symptoms and you could too, but you can't have this 5 day test until your back is clear as the patches cover your entire back torso and need clear skin for a reading.
Most of us with Grover's were leading active outdoor lives like you. Have you gone to the dermnetnz.org site I have recommended and looked at Grover's site? It has a good simple list of supposed causes, for Grover's sun exposure is one, and also this site has very good photos. Even though my GD case is classic, my only biopsy came out negative, the derm said it is because the GD must be active to show up positive on the biopsy and when biopsied my breakout was beginning to clear up. They say it is not genetic, but my sister who was always told she had heat rash got a biopsy after I told her that I finally got a name for my torso rash other than ACD, she got biopsied and it was positive. Her symptoms have always been minor and only around her lower bra area. Even her itching is mild and never painful. My symptoms have been severe and like you restricted my outdoor activities and sleep.
Others like myself are sharing info about our cilantro treatment trying to help others. My next step will be to go to dermnetnz.org, contact them into looking into adding this information to their website.
I'm hoping cilantro helps you, seems it helps about 50% of us.