Hi, Tricia,
I can't add much to the above, but just found your post and wanted to welcome you to the forum. My WG/GPA started out like yours, with ear infections and sinus infections, which in my case were attributed to allergies, which I do have, but have never manifested quite that way before. But I didn't know any better and it took until 2.5 years later, when it went into my lungs, for me to get a correct diagnosis and treatment. Though I did get prednisone with the antibiotics previously, which helped, I'm sure. Since I had lung involvement along with the sinus and ear stuff, I was started on cyclophosphamide (Cytoxan, CTX), a stronger drug than methotrexate (MTX). The other very strong drug, and largely preferred today is rituximab (Rituxan, RTX), but at that time in 2011 had just been approved, or was in that process, for use as a first line treatment for WG. Besides, it is very expensive, and I doubt my very basic insurance would have paid for it, and certainly would have insisted I try CTX first. The CTX worked, along with high to medium doses of prednisone, and I was eventually switched to MTX, which has kept my symptoms under control along with a lower dose of pred. I don't know what would happen if I tried to taper off of both meds. For now, I'm OK with things as they are. The rheumatologist I'm now seeing has seen about 20 cases of WG before me, which is still not considered a lot. There are more experienced docs about an hour and a half from me, considering traffic, but I choose to stay close to home unless things become a lot more serious. You might check the Vasculitis Foundation website for lists of preferred docs which you might be able to see or have your doc consult with, if she is willing. Examples of highly thought of centers for WG treatment in the US include Mayo, the Cleveland Clinic, Johns Hopkins, and some places in Boston. I'm sure there are others. Be sure to keep us posted and ask any questions. You can find a lot of helpful old posts and threads in the archives, too. Best wishes for making progress in controlling this wacky disease!

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