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43219876x (@43219876x)

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

Skin Health | Last Active: 1 day ago | Replies (1483)

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@dazlin

@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!!

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Replies to "@gardeningjunkie , as for the Hydroxyzine, idk whether its addictive...my guess is that it makes people..."

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.

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