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43219876x (@43219876x)

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

Skin Health | Last Active: May 14 7:33am | Replies (1483)

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@gardeningjunkie

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.

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Replies to "Thanks for the info about the hydro. I see my cardiologist next week and need a..."

@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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