Hi there, I have the post asking about my rare blood disorder called cryoglobulenemia which causes vasculitis, an autoimmune reaction to platelets sticking together in the small capillaries. Inflamed, vasculitis spots called purpura on lower legs, damaged kidneys,(possibly contributed to stroke). Not an easy thing to treat. Not much knowledge about it either.

Prednisone got me out of hospital after a major crises. Finally figured out on my own needed to see a hematologist. Went to Stanford to head of department- suggestion- try four infusions of Ritumimab, normally used for non-hodgkins lymphoma, fairly experimental and moderately easy to tolerate.

Only the hematologist knew about this option (my second thread requesting updated info on rituximab.) Worked well to suppress worst symptoms for five years. Now moving into inflammation cycle again. Doctors suggest repeating tx to preserve kidney function. Big bummer. Not wanting to do it again.

One thing very different from your situation is my low CRP. Hope you do check into plasmapharesis and other specialists suggestions just in case they know something in another field and alternate "toolbox".

Vasculitis is a huge umbrella hiding numerous conditions which are very challenging for doctors, who do not do well with complexity. Sure wish they were like the doctor on the TV program 'House'. He loves a challenge but even he gets stumped by these cases fairly often. They are based on real diagnostic mysteries.

I wish you good fortune in finding someone who can point you in the right direction soon. I wish I had this great recourse here way back in 2004!! Best to you...TT