For me the most distressing symptom of Wageners has been losing my hearing and getting tinnitus so loud I've had a lot of trouble coping. When I was diagnosed I was given steroid injections and started on prednisone and the hearing loss and tinnitus got significantly better. However, last week after my first infusion the tinnitus started to get significantly worse. It was slow, but over the last week it has risen to a crazy level. I looked it up and it looks like it is a side effect for 1 to 10% people. My rheumy never told me about this. I am debating not getting my next infusion because it's so bad.

Has anyone else experienced this?