I wanted to introduce myself. My name is Paul Gillian, and I live in suburban PA. At 65 years old, I was diagnosed with WG (Wegener's Granulomatosis) in January 2011. The disease first manifested as a persistent ear infection, which unfortunately resulted in significant hearing loss in my right ear. I also experienced night sweats, a dry cough, and a decline in energy, appetite, and weight (I lost 25 lbs initially). Thankfully, my doctors classified my case as "mild WG" since my kidneys were unaffected, and my lungs and sinuses have significantly improved with treatment.

Before the diagnosis, I led an active lifestyle. I swam and walked daily for fitness, swimming 1,500 meters in 40 minutes twice a week, and walking 3-4 miles in 45-60 minutes on other days. I also did yard work and assisted my wife with housecleaning.

Last summer, I entered remission (and regained all the lost weight, unfortunately as belly fat!). At that time, I was taking 100 mg of cytoxan/day, 40 mg of prednisone/day, and half a bactrim tablet/day as my WG medications.

In January, I experienced a flare-up that I believe was triggered by a too rapid decrease in prednisone and a switch from cytoxan to imuran. I was sick for another six weeks. Being retired has made it a little easier to cope with as I have no pressure to rush back to work. My wife is understanding and supports my recovery at my own pace without pushing me too hard.

Thankfully, I'm on the mend now. I'm back on 100 mg of cytoxan/day, 20 mg of prednisone/day, and half a bactrim tablet/day. My recent chest CT scan showed mostly normal results, but there was some blood in my urine during the blood work. My doctor is concerned that cytoxan might be causing side effects in my bladder, so I have an appointment with a urologist next week. I'm hoping it's just a UTI that didn't respond completely to treatment, but we'll find out. It's just annoying to have the urge to pee every 30-45 minutes.

I'm slowly getting back into my fitness routine, although I have some work to do to regain the level I was at before the onset of WG. However, I remain optimistic that I'll get there. I've learned that this disease can be quite subtle in presenting flare-ups. A couple of months ago, I let it go for a few days before realizing what was happening. By then, I was quite sick, and it took some time to recover.

Currently, I'm under the care of Dr. Matthew Exline at the Lung Institute of the Wexner Medical Center at The Ohio State University. During my diagnosis, I spent a week in University Hospital in January 2011. I also consulted infectious disease specialists (who suspected TB) and a nephrologist (who ruled out kidney involvement).

In summary, I'm grateful for my current condition. I've read posts from many others who are much sicker than I am, and my heart goes out to them. I sincerely hope that more progress can be made in understanding effective diagnostics and treatments to minimize the suffering of those affected by this peculiar disease.

Wishing you all the best of luck.