I am back from Mayo Clinic. Yesterday, I had breathing test, urinalysis, blood work, ENT visit, and then my pulmonologist. Everything is good except sinuses, breathing test even improved. They think I have active wegeners in the sinuses still and they are thinking I am feeling great because of the steroids I was put on in the hospital last week.
So, my pulmonologist wants to put me on Rituximab. She said I would do one infusion a week for 4 weeks and then that would be all I should have to do. She said since I haven't been able to come down from 20 mg of prednisone, that the methotrexate and pred are not doing the job. She is writing a letter to insurance - she said it takes about a month for them to approve it. So she said stay on the methotrexate and pred until then.

Any thoughts, opinions, questions, concerns from anyone???

I am worried because I feel great now, and the only major thing is the sinuses. I didn't realize they put you on that med for sinuses. I thought maybe if the lungs were really bad or kidneys but as of right now it looks as if it is just my sinues.

Even my blood work has been good, never had a positive anca or anything. The only thing that diagnosed my Wegener's was the looks of the biopsy from my nose - was so inflamed.