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

Skin Health | Last Active: Mar 17 1:04pm | Replies (1921)

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@kimass1

Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell me it's not part of Grover's but it started around the same time. I have been to allergists and had every test imaginable and am not allergic to ANYTHING. I have gone on the Auto Immune Solution Diet which is a REALLY restrictive elimination diet for a month..Basically just meat, veggies and fruit. No dairy, no sugar, no legumes, no alcohol, no caffeine, etc. It was awful and it did not change a thing! I have now been itching for over a year almost non stop. The red bumps and SEVERE itching went away after Cilantro in March, but the hives-like rash has remained (with the exception of the first month after cilantro kicked in) Now when I say hives-like, what I mean is that they look like hives (red patches with pale raised bumps) The difference for me is that there is ONE bump in each area that his WAY more itchy than the rest and causes the whole area to itch. If I scratch off the top layer of that one bump, it seems to help it go away faster. The top layer of that bump usually comes off pretty easily and no bleeding. It's weird and I only realized this could happen by accident. I was SO itchy one evening I scratched a little harder than normal and this happened. So now I do it almost every time a rash pops up. These hives travel. I could have them on my breast, armpit and stomach one hour, then they go away and pop up on my butt and back, or on my head and chest. There is no rhyme or reason. although it travels, it's constant. Some days better than the others, but it still would be nice to have an itch free day. Obviously I have found ways to "manage" it. But I am over it! I believe it's part of Grover's, but can't be sure because all my Doctors say it does not present like Grover's. I personally don't think they know MUCH about Grover's other than what is written in the literature. Which simply states it's "transient" and "goes away in 6 months to a year" I know this is not the case for almost everyone I have spoken to that has the disease. It lingers or keeps coming back. I think I have tried almost all prescription drugs offered for hives and GD and have asked for others not offered! None have worked. I am thinking of having another biopsy. Any suggestions?

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Replies to "Hi all! Just another follow up. I am Still having issues with "hives". The Doctors tell..."

@kimass1 Have you had any new stress in your life, things that you are suppressing? I was actually in the derm's office this week for 6 month check up and he noticed some Grover remnants, which were not bothering me. In the meantime, I went through a very stressful hour involving a med alert call I received and which I could not do anything about. Within a few hours I had a new cluster of Grovers in an area not before covered. It began after I left the derm's office. This is my first outbreak since the initial one last January. I never stopped cilantro all this time. I just KNOW that the stress precipitated this outbreak because I was all hot and perspiring and quite upset. All worked out fine as far as the med alert was concerned. I applied triamcinolone cream to the area to control the itching and it seems to be working. I am only on day 3 but I thought this was the weirdest thing I had ever experienced since that particular area was clean as could be prior to the stressful event. My stress caused me to get very hot (possible blood pressure rise?) and my scalp was even wet. Rarely do i have such a reaction, but then again, I thought my husband was being transported to a hospital by paramedics and I was an hour away not knowing which hospital. It was a false alert and for that I am grateful. That is why I am asking about stress. Sometimes the stress can be more subtle.

I can offer you is sympathy but wish I could do more as what you are describing is not like any GD conditon I have heard of I wish there was a hospital dedicated to skin diseases like MD Anderson in Huston. You have to keep trying and another biopsy could help. From my experience biopsies have to be taken at the right stage of a breakout. My GD biopsy was negative. I was almost at the end of my initial GD breakout which lasted 1 year about 5 years ago when I went to a new derm who took one look and listened to my symptoms and immediately told me I had GD. Others treated it like my Allergic Contact Dermatitis, so of course nothing helped previously because basically no meds help with GD. Yet when she took a biopsy it came back negative. She told me at the time of the biopsy that for the GD biopsy to identify GD it needed to be in the active stage. Yes I had the clusters of classic rashes all over front and back torso, upper and lower but they were scabbing at the time of biopsy. All I can think of is for them to accurately find the GD it has to be a fresh active area. Also what is your biopsy testing for? Is it limiting the test to GD? Can they biopsy for hives, shingles or other skin conditions with the same biopsy. You could have multiple skin diseases and your doctors are limiting their ideas to GD.
You are one to study. Have you gone to the New Zealand Derm site, dermnetnz.org, a site which helped me identify one of my 3 forms (once again incorrectly treated as my original form of eczema by derms. Start with a blank slate and search their skin site for your symptoms, not assuming it is GD. This site has the best batch of photos of actual patients with the skin condition. You will find various appearances with each type, even GD as we know has variations, but if you search though the pages you may find a photo of hive like rashes like yours.
I though my GD might be coming back as my lower back in the center was itching, yet confused because upon closer inspection the itchy area was just one wildly itchy non healing bump! Nothing remarkable in appearance but it would not heal for at least 3 months. I could scratch of the scab once crusted to only have it return and never heal. It never had puss and didn't bleed but a bit, like you mentioned. My back in that area is still not smooth as I can feel a few little bumps, but they do not itch. I believe GD permanently has changed my skin layers. This one bump was so itchy it felt like if was dozens of GD papuales. I changed my gardening clothes from loose 100% cotton jeans, held up with a 100% leather belt (I'm not allergic to the 100% or the leather) to 100% cotton bib overalls. The belt and the jeans but pressure right at this bump and rubbed it when bending over. The overalls have zero pressure. I also broke down and used a steroid on the papuale. Steroids never helped with GD. Yet after eliminating pressure and adding a steroid after 2 weeks it was 60% better. Stopped steroid and still better, but scab is still there and will leave it alone this time. I think the friction irritated my GD damaged skin and this papuale may not be GD but simply weak skin. Now just minor non-troubling itch, yet it's not gone. I still make my cilantro smoothie and plan to for life. Still this doesn't account for your random hives, mine seems to be triggered by pressure and it was not a hive.
Your situation really sounds like an allergy the way it moves around in areas not normally associated with GD. Does it happen more if you go outside? I have a friend my age that just this year started getting hive like welts on her arms, legs, scalp, face and even unexposed areas after she gardens. It sure seems like allergies, but when she gardens she never leaves her patio or sidewalk, just reaching into flower pots or little flower beds. No dietary changes. Maybe it's in the air as she lives in a wooded area.
You helped so many of us with your input about cilantro and hope others on this site have ideas for you.