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

@pitch25 , I've had these rashes since 2013...they range from severe and just about all over my body, to just spotty at times. Thankfully the widespread happens occasionally, last was 1 1/2 yrs ago. I had to go on hydroxyzine and doxipen. I use and like the same cream you use, triamcinolone. I mostly get pop up rashes on my torso, and neck, and this cream helps after a few consecutive days. I've been prescribed several different topicals, of no real help. My dermatologists from Mayo also suggested after applying this cream to use wet wraps by taking a cotton t-shirt and soaking it in cool water...ring it out well and put it on over the cream. Stay in it about 1 hour. Its soooo soothing, but sounds yucky. I then wear a terry robe so I don't get cold.

I meant to add, no real hot showers, just warm, and I was told to use Vanicream bar soap, and body cream. I also watch my sweating, I live in Florida and spend alot of time outdoors...so I immediately shower, apply Vanicream, and I like Ammens medicated powder. I honestly can't say what triggers these rashes...been 6 yrs, and believe me, I've tried just about everything and the list goes on. Its horrible, and maddening and the second I feel an itchy rash, I just about freak out with the anticipation of severity. Mostly they are spotty, but when I get them widespread, like measles, I get sick with fatigue and chills.
@gardeningjunkie , I had not heard GD may be associated with the shingles vac...I'm supposed to get mine...yikes!!

I was told this by one of my dermatologists.I plan to check with my other derm in a few months. If I were you I would check with your derm and get an opinion and please share what you are told.
I figure it must have been a shingles reaction since the outbreak only lasted 1 month, with anther month of healing.Normally an outbreak of GD lasts at least 6 months. I'm fine now and have not resumed cilantro, yet do splash the area with witch hazel at showers end, plus Aquaphor Healing Ointment to coat my entire body, but it contains lanolin which some are allergic to.
Like you I stress about it also, the fear of a recurrence must aggravate our entire body.
I was prescribed Hydroxyzine HCl 25 mg up to 3 daily for stress relief from my cardiologist to help with my hypertension.about 2 weeks after this latest GD/Shingles vaccine breakout. I didn't realize it was simply a strong anti-histamine. Now 3 months later I am still taking 2 daily and love it. More relaxed, but it doesn't make me tired during the day as some report. I told my derm about this added px an he was surprised by the high dose as he normally prescribes 5-10 mg. I wonder if this high does helped outbreak calm quicker. I have discontinues all my other anti-histamines and I was taking 3, 24 hr over the counter pill daily.

@gardeningjunkie ...as for the hydroxyzine...when I had the full body outbreak, I needed to double dose. I dont think my local dr could grasp my severity of 24 hour stinging scabby itchy papules and the the effects of not sleeping for weeks. Allow me to share, that when I went for a refill, my pharmacist at publix called me and said they were declined refill because my attending nurse(same drs office) said it's inappropriate. WHAT!! So now I'm considered an addict. I've posted pics about 1 1/2 yrs ago , of some areas of rash, asking everywhere for advice.
I finally got back in with Mayo, already an existing patient there from 2013 for skin rashes. My dr there had retired, so I was pushed ahead for 3 months. How could i wait 3 months in this condition?? But when my oncology nurse saw me, she insisted I get seen, which I did. So getting back to hydroxyzine, no problem, prescriptions ordered along with doxipen, hydroxyzine, and daily allergy pills...and you know, the soap,prescription cream, wet wraps, etc. Several skin biopsies. Thankfully, I have not touched a pill since. Like you, when I was in full blown rash, hydroxyzine didn't have much effect as to drowsiness. When I was tapering off, then I did feel sluggish and very down.

Thanks for the info about the hydro. I see my cardiologist next week and need a refill and will ask for more info on this drug. Surprising information about effects of tapering off. I didn't realize this was addictive like opium. I read the literature and wasn't alarmed by the warnings. The cardio also tried prescribing me Xanax and I tried one pill and hated it. It made me feel spacey-weird. I really resisted asking for something to help with stress as my mother was into Valium and Vodka so I have always been fearful of addictive drugs.
You mentioned seeing an oncologist, they are much better at filling prescriptions we request as I learned. I survived Leukemia, do you have an active cancer? Forgive me if you already told us, but with so many bloggers I loose track.
I have had GD for about 6 years with my 1st, 1 year outbreak the most debilitating. It sounds like you go into remission at times like many do , myself included. Even when not symptomatic my torso skin is hypersensitive, but the pain and itching are so minor; not an issue. I will always have a few scabs from papules even when not in an outbreak.
Hoping we stay in remission, but I am realistic and know that's not realistic.

@gardeningjunkie , as for the Hydroxyzine, idk whether its addictive...my guess is that it makes people sleepy/drowsy like any strong antihistamine, so there may be regulations on dispensing. I was told to double up, so that's why I needed a refill...then nurse said, not appropriate to my pharmacy. Meanwhile she was the one who upped the dose...crazy. But as I said, when I was in full blown rash, hydroxyzine didn't give me those side effects. I think I was so distraught and uncomfortable it would have taken alot to help me...idk. My dermatologist at Mayo then prescribed plenty of hydroxyzine with refills for 1 year after seeing me and taking 3 biopsies...no problem at the pharmacy or insurance...go figure .
Yes, I see oncologists at Mayo clinic every 4-6 months to monitor my MGUS.
I also truly hope we get through this spring and summer, rash free!! I'm a little worried I'll admit, because I've been getting pop up rashes, and feeling itchy already. I can deal with that, but not all over my body with those papules, UGHHHH!!

I just joined as I believe I may have Grovers. Went to Urgent Care yesterday and doc couldn't figure it out... didn't think to ask of Grover's at the time. Going to my dermatologist on Thursday this week. No itching at all... no pain, no other symptoms... but red spots on my chest that look like bites. Can you have Grover's with no itch? It flared after I did a home sauna session... however, I've been doing my sauna (and other sweaty sports) for over 20+ years. Is this something that can happen so suddenly?

I checked out MGUS and read about it forming in the bone marrow, it's related to lymphoma and lymphoma is related to leukemia. Something going on with our immune systems. Many with Chronic Lymphocytic Leukemia, CLL the type of leukemia I had have the disease mutate into Lymphoma.
Yes summer is a season to dread, especially since I am obsessed with outdoor landscaping. I have had to discipline myself to get up at dawn and be back inside no later than 11 in the summer. Shower immediately. I prefer to do house chores first then garden, but must reverse that order. When in a hard breakout any heat causing any sweat hurts so any outdoor activity with exertion is off limits.
All my subsequent outbreaks have been somewhat less severe in rashed areas and duration than my initial one year complete wrap around torso rash. Yet itching is itching. One mosquito bite can be maddening and a lesser outbreak of GD is just about as miserable. At least my sides have always been clear so at night I can lay on them and have trained myself not to move. My last 2 relapses did not cause the severe pain of previous ones.
Did you try the cilantro and witch hazel for control. I know the cilantro stopped one outbreak and the witch hazel used on the few papuales I still get on lower back at waist and across abdomen seems to help heal and control.

I always had rash with itch. First visit with PCP and wanted me on strong oral steroids which I turned down.Dermatologist simply observed and diagnosed Grover's, but no cure available.

@gardeningjunkie ....I remember well we spoke in length about all our symptoms and remedies. I just dont post here very often, but I do check in from time to time...so I remember you very well. You've been helpful. As for MGUS related to lymphoma, I have no idea. I did specifically ask my oncologist last year, and he said I have IGG KAPPA, with very low IGM'S which are the healthy main white cells to fight infection. One thing I believe, my rashes started 1st, then I was diagnosed with MGUS. I'm sure drs aren't connecting the dots on the two, but I feel something is wrong. There's really not much more they could do for me, except monitor my bloodwork, and see derm for skin issues.
I did take photos of my body when I broke out badly, and scabbed, because by the time I get an appt I'm almost healed, so I don't think they believe how sick I felt. I dont have pain, but, I had severe fatigue, and chills...I think the papules may hurt. I'm so done with witch hazel and every topical, yes, I've eaten cilantro...not doing that every day. I even shaved the papules and applied peroxide, out desperation, or maybe I was losing my mind(no sleep)...I slept with a brush so I could scratch after hours of resisting...(mental torment). One night back in 2013, after a day the beach, I thought maybe the sun and salt water would draw out the rash. The complete opposite happened that night, so, so, bad, covered in red itchy hot bumps. I literally sat on the bathroom floor and cried...I took my shaving razor and shaved off the rash...then drenched myself in peroxide. The stinging burn was actually a relief. Looking back, I feel so bad I resorted to desperation, and did that. Thankfully, now, if that happens I've got meds and prescription cream.
Nice of you to look up MGUS, and informing me. I'm not ruling out lymphoma, because I've had enlarged lymph nodes , one surgically removed in 2014, but tested benign...all so very strange.