Hi Patty, Thank you for sharing....I find our beginnings with Wegeners very similar....I was diagnosed in 1990, I was 25yrs old and had been sick with ear, eye, sinus infections for a year, then landed in the hospital and diagnosed within a week. My beginning meds were prednisone, oral Cytoxan and eventually Bactrim. The oral Cytoxan did make a lot of my hair fall out, but it came back in eventually and it also affected my ovaries, so I chose to get my tubes tied. My wegeners simmered, I always had to stay on a small dose of prednisone to keep it away, and I was VERY physically active, pushing through each flare, all the pain, but I did take the meds when I flared. So the disease has changed SO much over time!! Things that would clue me into knowing I was having a flare changed, so I depend more on lab results now for inflammation. Also, I just finished up a flare, and now am left with trying to decide what to work on next, my ears? My lungs? Both are in desperate need of study....and also now, I am staying very hoarse and raspy...so maybe the beginning of the return of my throat problems. Its just a crazy ride. I totally admire you for actually choosing to get off meds that were making you feel bad and sick, and deal with this monster of uncertainty!! I have also wondered if my kidneys will ever get worse. I don't dwell on it, but I try to stay focused enough on my body so I can tell if I need to contact a doctor about something serious. Anyway, at this point, like I said, I am dealing with the damage the disease has caused, mostly my sinuses. I am researching info about what is going on with my ears. I feel they may be permanently damaged, as my eyes tear ducts are. But now that my lungs are acting up, its worrisome become I battled MRSA 2 years ago, and it was tough. But all the ct scans of my lungs are a mystery to my doctors, so we shall see. Just living day by day, some days are fantastic....some not so much. But I am here, alive, and happy. I hope all goes well with your infusions, and will be thinking and praying for you....Blessings