Hello everyone 
so saw my rheumatologist aging today (i go every 3-6 weeks) and she said i have a huge blood vessel and serious inflammation up the left sinuse. I wasn’t surprised because my brain MRI shoes mastoiditis in my air cell and after that had camera put up my sinuse down my throat show severe chronic mucosal inflammation just like my stomach and esophagus lining and lung tissue thus confirming small vessel vasculits. … the rheumy put in an order for a CT of left sinuse and facial structure and a intenal referral to a different ENT that she knows deals with autoimmune related/ relapsing polycondritus sinuse issues. The polycondritus is destroying my cartilage systemically so this is way more painful and uncomfortable than the typical sinuse inflammation because the cartilage of my nose if affect too. . The top of my left ear started thinning, re absorbing a year ago. .It’s very painful 
anywho in the meantime I’ve been back on a higher dose of cellcept a bit and while it helps my lung function enough to stay of the oxygen tank a keep my brain clear it’s not enough to help my joints, cartilage and vasculits so my rhuemy is starting the process to get approved for Rituxan. I’ve already done cytoxin at the highest dose so at this point im not afraid of side effects and i have a port that makes my life much easier to be on infusions drugs. … i guess im just scared be I’ve almost run out of options so i want to be positive the Rituxan will slow down the progression but at this point im burnt out on getting excited the every drug will be “the one” … so anybody out there had any success with Rituxan for at least helping their small vessel vasculits? ? I’ll also be on it in hopes to slowdown my polycondritus and i know this is mainly a lupus support group ( i do have overlapping lupus ) but i do remember some a while ago saying they were diagnosed with it too. .bummer i can’t remember who:/ its a rare disease and unfortunately I’ve had little to no success locating anyone /support groups that are recent to talk to. There is a current face book page but no real patient interactions but just more information about the disease.
Maybe rituxan is the one- this drug is used extensively in Canada for lupus with some success so fingers crossed for you
I've heard some good things about this drug in treating lupus, hope it helps you.