Hi all!

I hoping you can provide some insight and direction. I was diagnosed with Wegener's a year ago. Not a classical presentation but I am C-Anka and P3 positive. I have so far opted not to take Rituxan or methotrexate -- and am trying to manage my symptoms with prednisone alone. This may be incredibly naive and stupid, as I have osteopenia. I have been doing a lot of reading and research and well I still cannot seem to get to a place where killing all my b-cells many times makes sense to me and I am very worried about getting a serious respiratory or other infection being immune compromised for such a long period. Needless to say, my rheumatologist (a vasculitis specialist) and internist (who has never seen a Wegener's patient) are seriously advising that my course of action is dangerous, etc. I have even started to see a therapist as I thought perhaps I am experiencing the five stages of grieve and I am just in denial.

I am looking for a second opinion. I am willing to go anywhere. Ideally I am looking for someone with significant experience treating many Wegener's patients -- as each of us are unique and may require tailored treatment options -- someone familiar with current research, etc.

Any advice or recommendations would be greatly appreciated.

Anyone going to the Vasculitis conf in Minn in July?