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Cryoglobulinemia Vasculitis Question

Posted by roxanablue @roxanablue, Jul 20, 2022

I've been diagnosed with Cryo Vasc..(for short). Along with Sjogrens and Reynauds, both oc which are laying low right now..im on Methotrexate and tapering off Prednisone..my symptoms that got me here were flare ups on my legs..havent had a flare up in weeks which I attribute to a few things. They have ruled out Multiple Myeloma and I'm going to Standford for a second opinion since this is a blood disease..and trying to find my triggers for flare ups.. but this is my question....has anyone had a bone marrow biopsy to eliminate blood cancer?..my Cryo surfaced due to Hep C years ago which was eliminated thru treatment...thank you in advance.

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blt054 | @blt054 | Jul 29 10:09am
In reply to @1kerrilyn "Does anyone have cryoglobulinemia vasculitis (severe attack coming w in 6 hrs of having both lower..." + (show)
@1kerrilyn

Does anyone have cryoglobulinemia vasculitis (severe attack coming w in 6 hrs of having both lower legs and fingers amputated) CIDP/CIPD ?

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No & I'm sorry I can't be more helpful to you. I don't have a doctor anymore that I even see as there aren't any in my area trained in this. I had Hep C & did the treatment for it & am clear of that virus but still deal with the Cry Vas. It disrupts my life terribly pain wise & not being able to stay warm.
My gosh, is the loss of your limbs caused by this terrible disease? I'm sorry, that isn't my business...
But hey, if you'd like to talk anytime I extend my hand in friendship..
Be well!
Bonnie

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