I am Mal Brown a 63 yr old grandfather from Byron Bay Australia. Was diagnosed 10 years ago with GPA and/or Lupus.
It first went back to one eye and lost a fair bit of vision, has subsided until a year ago and has now gone to my lungs. Had definitive diagnosis of GPA with lung biopsy.
I had pretty standard treatment I think, high dose steroids, oral chemotherapy and antibiotics.
After 8 or so months symptoms settled down although increasingly breathless. Found I had had a pulmonary embolism. About 2 months ago had a flare up. The GPA had gone to my eyes and had increasingly damaged my lungs. My rheumatologist put me back on high dose steroids, 2 doses of MabThera Iv infusion, Immuran and a blood thinner.
I have just learnt about this forum, which I'm so thankful for. I don't know anyone with GPA have felt very isolated and uninformed.