Hello, I recently joined your group and have been reading a lot of your info. It’s been very helpful and encouraging. I was diagnosed with GPA April 2020, just before my 52nd birthday, after seeking medical help for various health changes for 3 months. Started with my nose congestion and bleeds, then my ears with pain and hearing loss, then fingers became discoloured and cold, and last symptom was chest pain with difficulty breathing. A medical internist in emergency dept ordered bloodwork which showed a very high level of inflammatory markers and positive ANCA. Had a spot on one lung show on CT. My kidney was also involved but they found a stone too so nephrologist wasn’t convinced. I have been on tapering doses of prednisone, had cyclophosphamide 5/6 doses and stopped early July due to reactions. Just had first Ruxience infusion yesterday (bio-similar to Rituximab which recently ended patent). Originally it was planned for mid August but for various reasons (medical f’ups) was delayed. It’s been a scary ride for myself, family and friends. Now that the big drugs are done I’m hoping to taper off prednisone and find my “new normal”. I played and coached competitive soccer until 2 years ago and we ski every winter. I work in community as a nurse and haven’t been back since March when symptoms got bad and COVID joined the world!
Big questions are (1) when to return to work and (2) when will I know I’m normal?? Thanks for listening