Vasculitis Community Group

A support group for people with all types of vasculitis, including: Behcet's Disease, Buergers Disease, Central Nervous System, Churg Strauss Syndrome Cryoglobulinemia, Giant Cell Arteritis (Temporal Arteritis), Henoch-Schonlein Purpura, Hypersensitivity Vasculitis, Kawasaki Disease, Microscopic Polyangiitis, Polyarteritis Nodosa, Polymyalgia rheumatica, Rheumatoid...

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Heart, Blood & Circulation
/ Vasculitis Support Group

cryoglobulinemia

deleted_user
deleted_user
I have been dealing with type 2 cryoglobulinemia for quire a while. I am about to start Orencia to help control rheumatoid arthritis flares I had been taking Enbrel for over 3 years but it has become less effective controlling my arthritis, however as an off label result my vasculitis symptoms have been well controlled during that time. Does anyone have experience with Orencia?
deleted_user
deleted_user
No, sorry. I've been taking prednisone for my cryo. It's taken a toll on my body, especially with weight gain, but I am no longer stuck in bed for days and weeks at a time. I could barely move before I started the prednisone, so for now at least, it's worth it. I've been on it for 2 yrs. Usually I take 20 mgs a day but I'm having a lupus flare up and am taking 60 for a week, then 30, then back to 20.

I've gained about 55 lbs. in two years. I was told this would probably happen but what I didn't expect is to become so obsessed with food. It's always on my mind and I'm having trouble controlling the amount of food I eat even though I can't stand to look in a mirror. I also have moon face and a wicked fat neck. At least I don't have to worry about being ogled. lol
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