Hy everyone, my name is Randy,I have Wegner's Granulomatosis. I live in New Westminster British Columbia (a suburb of Vancouver). I found this site about a month ago and have been busy reading a bunch of the threads and am sorry I didn't find this site sooner, it would have been so helpful during my recovery.
I thought I would give a brief history of my experience with Wegner's.
I was diagnosed with Wegner's in the spring of 2008, it was an ugly first three years but things are under control now. It attacked my sinuses, hearing, eyes, vocal cords,lungs and joints. Worst of all It attacked my digestive system and I developed severe internal bleeding. 6 Months in the hospital,6 operations and minus 6ft. of small intestine, they managed to get the bleeding under control.
I was given massive doses of prednisone and cyclophosphamide to get the Wegner's under control. This cut the blood circulation to my hips and in 2010 I had a total hip replacement of my left hip. Then in 2011 I had to have a total replacement of my right hip. It has been a long slow recovery because I lost most of my muscle mass in the hospital and had to work at rebuilding the muscle around my hips to hold the joints in place. I saw my hip surgeon last week for a three year check up and he says every thing looks good. I just need to keep working on the muscle strength and range of motion.
The Wegner's has been in remission for a year now. My Rheumatologist says my blood tests are so good that in most cases he would take me off my medication and monitor the Wegner's with blood tests, but in my case they had such a hard time getting it under control in the first place that he does not recommend it. I agree, I would rather put up with the negative side effects of the Azathioprine than go through all this again.
I haven't seen anyone else on the site who has had Wegner's attack their digestive system. I would be interested in hearing form anyone who has had the same problem.