XnCelt
I first went to U of Penn and had a horrible experience. The doctor wanted to use me as a case study and follow a less normal protocol of low doses of prednisone. I kept getting sicker and my eyesight was getting worse. After 6 months I went through the ER at Will's eye and found a great doctor and am with a team of Jefferson. The doctor at Will's saw the MRI report and that the sinuses were heavily involved. Within a month I had a major sinus surgery and they found a fungus in the sinuses up in the brain. They did biopsies but because I had already been on pred it came back inconclusive. The doctors put me on Rituxan right away. The insurance company kept denying it but the doctor did it anyway, saying that if it got denied he would pay for it. The Rituxin worked great but quickly I started going down hill again. I eventually had to have my left eye and all the muscle and tissue around it removed and a growth in my brain removed. The biopsy of that material showed Necrotizing granulomas. I also had elevated ANCAs and Sed rates. I suffered from chronic sinusitis and nose bleeds.
I'm now with a great rheumatologist Dr. Kiriackado. She takes a little to get used to but she listens very well and encourages me. She even asked if I would be willing to start a face to face support group. I have a background in social work and psychology.

I live out by valley forge and have two teenagers and a great lazy dog named Snickers.