Hi there! Well this will be a doozie for a first post. I was diagnosed with Wegener's via kidney biopsy in 1992 (was 21 years old) with vasculitus, sinus involvement and kidney involvement (was losing 20% function a month). At the time the disease was very aggressive and was treated successfully with cytoxan/prednisone and then imuran/prednisone and achieved full remission in two years. I was in full remission until 2003, and since then (now I realize) it has been active, but not enough to be on any meds. In the second 1/2 of December 2010 it went full blown again. The first 1/2 of December I did two half marathons, and then by the end of December I could barely make it through the day. I again have sinus and kidney involvement, but this time instead of vasculitus with spots on my legs I have leg pain. So am going rounds with the different docs and currently am on 100 of imuran and 20 of prednisone. I am making it through the day, better than with no meds, but my UA's are showing now 3+ blood (no protein yet though and kidney function is still ok) which has gone up over the past month while taking imuran. So it is not working...

I have been checking out all the posts here, and taking the advice about getting to a major center, so next week I am going to see Dr. Langford at Cleveland. Have seen some of the posters about her, feel like I am going to see the wizard who can make everything right in my world again BTW I am not a patient person and I realize this, just want to get this into remission so I can get back to living, my medical friends tell me that I am a horrible patient, but am working to be better. In the middle of December I was on track to do the Austin Marathon, that was yesterday, and super disappointed that my activity stopped dead at the middle of december.

In researching it seems that Rituxan is a miracle drug and am wondering if anyone has gone on that after being in full remission, and before having to go through oral cytoxan. Been there done that on cytoxan and would love to avoid it if at all possible, although thankful that I have a drug that has worked for me to put me in full remission.

Would LOVE to hear everyone's thoughts on my situation. Really hard sitting here waiting to see Dr. Langford next week. Even as I write this I feel guilty because reading everyone's stories are so heartbreaking, this disease is so hard and I have only been dealing with it for two months now, but for those that just can not get it into remission my heart goes out to you.

Anna
Austin, Texas