Hey Everyone! My name is Jane and I'm from Prince Edward Island, Canada.
I was diagnosed with GPA at the end of September. It started in August with what seemed like an exceptionally awful and painful ear infection with gradually worsening hearing loss, eventually ending up with near total loss. I was referred to an ENT, who decided to do surgery on my ears to drain the fluid and put in tubes - but when he tried to do the surgery, he found it was "like nothing he'd seen in 30 years of practice" and ended up taking a biopsy which led to my diagnosis. I met with a Respirologist, and I'm a little more than 2 weeks into treatment now (Methotrexate and Prednisone) and I've had improvement with my hearing in my left ear, and my ENT is confident that the other will get better once the fluid drains, which I'm very happy about.
Since my diagnosis, I am finding that I honestly have no idea what to expect. The doctor explained a bit about what GPA is, and what the medication is supposed to do - but I am at a loss as to what to expect in day to day life as someone living with it. I suppose that all I can do is carry on like I'm normal, and deal with things as they come. But are there things that I should be preparing for? Are there things that I need to know about that may not have been brought to my attention? I'm feeling really in the dark!