Thanks everyone for saying hello and offering some good advice. I called my GP today and will see him Monday to discuss how my appointment went, and the idea of getting a second opinion. Rochester has quite a few AIR practices, and the University of Rochester is a very good and reputable hospital. Perhaps I'll find a better fit there. Lag713's point about finding a doctor with expertise in Wegener's is a good one. I don't have any idea how many people my doc has seen with this particular AI. There must have been a good reason for my GP to recommend him, in fact he had to fight to get me in to see him as he wasn't seeing other patients. But the fact that I left the appointment underinformed and unprepared does not sit well. Not to mention, I feel the clock ticking and wonder about getting on immunosuppressants.
Some of you mentioned getting baselines. I do have the blood tests (positive ANCA) and urinalysis baselines (kidney was involved), but nothing yet on the lungs. I'm going to request that a CT is done. While we were trying to figure out what the heck was going on with my ears, my ENT sent me to an audiologist who said I had fluid in my middle ear. With the prednisone, the ear finally did clear and the next pressure test showed my hearing was normal again, but the eustachian tube still isn't functioning properly as it clicks and crackles still.
I'm sure there are other threads on this, but I've just begun to wonder about insurance and the costs of treatment. My mother-in-law asked me if the drugs were "off-label" and I didn't know what that meant. But I think that most of the drugs were in fact developed for other purposes, so I need to start asking questions about coverage I guess.
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