Hello everyone,

I am a 69 year old male recently diagnosed.

I recently found this group and have been scanning posts on the forum for information to better understand what this whole GPA thing is all about. I'm still struggling with the idea that I have a chronic, likely life long, disease (but I'm getting there)

My own GPA diagnosis is focused in my orbits where inflammation has affected my vision but has not spread to other organs. My journey started about three years ago with chronic sinus infections and multiple sinus surgeries. Early last year I began having vision problems. ENT and ophthalmologists could find nothing. My personal doctor sent me for an MRI of the orbits where enlarged tissue growth was seen. Surgical biopsy removed some of the tissue and after an agonizing month, all doctors came to agreement it was GPA and that the sinus issues were probably caused by GPA, not the other way around.

My new rheumatologist recommended treatment with rituximab infusions every 6 months and put me on 40 mg per day of prednisone with eventual tapering.

The problem I am having is with tapering off the prednisone. In July and again in October, once the daily prednisone was reduced to around 20 mg, the inflammation in the orbits flared up and vision was impacted, Another MRI and pulse infusions of 1000 mg per day for 3 days restored vison in both cases. Same again in October.

I am now at a key point. I had my second 6 month rituximab infusions about 2 weeks ago and am starting to taper off prednisone and down to 25 mg per day right now. We'll see if going lower again causes a flare up and there appears to no way to know if it will happen. The rheumatologist says that if GPA was in kidneys or lungs, blood work would tell us a lot more but the orbits are different and more difficult to see how things are progressing.

I post this tale of woe to see if anyone has had an similar experiences, I searched the forum for problems in the orbit but like most things with this disease, it seems everyone's experience is different.

Thanks for listening and I hope to both learn from and contribute to this forum