Hey All,

Christmas Day 2017 (60 years old at the time) came down with what I thought was a bad cold. Lots of sneezing, runny nose. Fever. Controlled with OTC drugs but it was a longer than usual slog. Then as the more messy symptoms subsided the saddle nose appeared. Then a few months of quiet, no symptoms. In all this time I had one bloody nose, a real gusher, but none since. As a result of the saddle nose, I had self-diagnosed Wegener's but dismissed it as "too rare". Then over the summer my ears started to plug up, which was especially bothersome as I am a musician. One ear eventually cleared up, the other got worse.

I finally went to my PCP, very agitated and upset. BP and pulse were through the roof. I told her I thought I had GPA. She ran blood panel, it came back pos C ANCA (just one titer over neg) she referred me to an ENT and Rheumatologist and I was on my way. Lungs and kidneys are and have been clear, got a tube in one ear, which cleared up that issue. ENT now has me on biannual checkups, Rheumy has me on 3 month check ups. The initial prednisone did nothing, but nearly a year of MTX, folic acid and Bactrim seem to be doing the trick (we talked about doing nothing at all but finally agreed that "soft care" pro-active meds were a prudent course.) At any rate, I am doing OK, eustachian tube in the "good ear" is a little wonky and noisy and I may get that ear tubed too next ENT visit. PR 3 is still high but lower than it was before I started therapy, P and C ANCA are neg. CRP is low too. Hanging in there. I exercise a bit and eat a keto/animal product diet and watch my weight. I am a strength coach by trade, but play music as an avocation/hobby. (And my BP is now about 120/70 and resting pulse now in the low 60s...both of which I take as positive signs.)

Preamble to above: I have a friend and coach colleague who is a pro runner, GPA sufferer and spokesperson for the Vasculitis Foundation. I sent in a donation to his Victory Over Vasculitis team the summer of 2017 and received a team T shirt in the mail. When I opened the package I remember thinking, "vasculitis sounds horrible, I hope I never get it. glad it's rare." And then a few months later...thanks Santa.

I hope this wasn't TMI. Glad I found this group!

-Randy