I'm glad I found this website. I had never heard of Wegener's until I was diagnosed with it at the end of August. I had breast cancer and chemo from February until April, 2012. Can't help but wonder if the chemo had anything with me getting this disease, anyone have an opinion? Anyway, after running a fever for a few days and feeling a sharp pain in my lung when I breathed, I went to the doctor. The xray showed my lungs were bad (they had be perfect in December of 2011, before my mastectomy), nodules and masses. So I had a CT scan, then needle biopsy in each lung, and was sent home with antibiotics to wait for the results. It was not cancer, thank goodness, but they didn't know what was causing it. Kept running a fever after the antibiotics ran out, so they prescribed another round. About 2 weeks into this, on a Sunday of course, I felt like I couldn't breathe so ended up in the emergency room and admitted for 5 days. My blood count had dropped to 6.9 so had 2 blood transfusions, plus a broncoscopy (?), and they sent me home to wait for the results again, not cancer but didn't know what. Five days later at my regular doctors office, I was still running a fever and an xray showed I had fluid in my lungs that had increased from the time I was in the hospital (I didn't know I had fluid in my lungs at all!) so they wanted me back in the hospital, stayed 10 days this time. They drew out 1 and 1/2 liters fluid from my left lung, then 2 days later did an open lung biopsy. The surgeon thought I had a fungal infection so they started me on an antifungal medicine, 2-3 days later they were getting results back and said it looked like I had Wegen's. So, was released from the hospital on August 24, and a week later had 3 IV infusions of prednisone, 3 days in a row, 600 mg each. Then started 50 mg pred. daily, plus an antibiotic 3 days a week. About a week later I had my first Ritoxin infusion, the first of 4, one week apart. My followup ct about 2 weeks after my last infusion showed my lungs were improving, and my bloodwork indicated my anca titer(?) had dropped to 130 from somewhere above 150. My pulmonary doctor said that was good. My oncologist (from my breast cancer) seemed confused about the numbers and I am scheduled for another Ritoxin infusion 2 months from the last one I had, that will make it the first week in December. I am feeling good, no more fever, and have finally regained most of my strength and weight, plus a couple pounds! I know the pred. can make you gain weight. I have terrible hot flashes, does anyone else have them from the pred? I am weening down, taking 30 mg now, going to 20 mg in a couple days. I also take tamoxifen which can make you have hot flashes, double whammy! I am concerned that I am getting the right kind of treatment, would like to hear what the treatment has been for others. Any advice would be appreciated!