Hello Everyone,

My name is Pete Schaeffer. I live in suburban Columbus, Ohio. I'm 65 years old and was diagnosed with WG in January 2011. The disease presented with a persistent ear infection (and has pretty well clobbered the hearing in my right ear), night sweats, a dry cough, and loss of energy/appetite/weight (lost 25 lbs at onset). Fortunately, my docs said I had "mild WG" as there was no kidney involvement and the lungs and sinuses have pretty well cleared up since treatment began.

Prior to diagnosis, I was leading an active life. I swam and walked for fitness daily - swimming 1,500 meters in 40 minutes twice a week and walking 3 - 4 miles in 45 - 60 minutes the other days plus lawn work and helping my wife with housecleaning.

I got into remission last summer (and regained all of the lost weight - unfortunately as belly fat!). At that time, my WG meds were 100 mg cytoxan/day, 40 mg prednisone/day, and 1/2 bactrim tab/day.

In January, I had a flare that I think resulted from too quick a decrease in prednisone coupled with a change from cytoxan to immuran. I was sick for another six weeks. Being retired has made this a little easier to deal with as I have no pressure to get back to work. My wife is content for me to recover at my own pace and not overdo things.

I'm on the mend now. Back to 100 mg cytoxan/day, 20 mg prednisone/day, and 1/2 bactrim/day. My last CT scan of my chest was pretty much normal. Blood work showed blood in the urine. Doc is now worried that cytoxan is causing some side effects in my bladder, so I'll see a urologist next week. Hope it's just a UTI that failed to respond completely to treatment, but we'll see. It's just annoying to have to pee every 30 - 45 minutes.

I am resuming my fitness activities, but will have some work to do to get back to where I was before WG onset. I'm optimistic that I'll get there. I've learned that this disease is very subtle in presenting flare ups. I let the one a couple of months ago go for a few days before I realized what it was. By then, I was getting pretty sick, and it took awhile to get straightened out.

I am being treated by Dr. Matthew Exline of the Lung Institute at the Wexner Medical Center at The Ohio State University. I spent a week in University Hospital in January 2011 while being diagnosed. Was also seen by infectious disease specialists (who thought I might have TB) and a nephrologist (who ruled out kidney involvement).

In summary, I'm grateful for the shape I'm in. I've read many other posts from people who are a lot sicker than I, and my heart goes out to them. I hope that more can be learned about effective diagnostics and treatments to minimize the suffering of those afflicted with this strange disease.

Best of luck to all.