Hi, everyone
I've been lurking here for a while and was finally able to get signed up. I am a 37 yo with a several years long history of "fever of unknown origin." My doctors have been trying to find a cause off and on since 2007.
I first had a daily fever (up to 101.4 or so) for seven months in 2007. After tons and tons of tests, no cause was found and the fever did eventually go away.
The fever resumed (or so it seems) about 19 months ago. It averages about 100 degrees in the afternoon each day. In that time, I have had about 15 major sinus infections, several major ear infections, transient joint pain, itchy, tingly skin, extremely painful red eyes... Just as the doctors were about to agree that I had seronegative rheumatoid arthritis, someone ran an ANCA test which came back with slightly elevated c-ANCA titers.
I found a rheumatologist who started to talk about treatment right away. The interesting part about my case (or so he says) is that my titer was never all that high and is negative right now. My CT scans show major disease in my sinuses, but so far nothing in my lungs. Kidney tests all look good, too, as do all other inflammation markers.
I'm going to schedule a sinus biopsy today, even though I'm told it might not be conclusive (yet the rheumatologist wants it done) in case it can give us very conclusive proof that I should start MTX. I have already started prednisone and Bactrim. At this point, every doctor seems to be in agreement that I have Wegener's, but that perhaps I am a "lucky" one with mild and/or limited disease.
Any thoughts on a pattern like this? I certainly haven't willingly embraced this diagnosis, but it's soooo frustrating, as you know, to not have answers.
Thanks for reading this. I have learned so much from all of you already and am glad to be able to be a part of the conversation.
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