Quote Originally Posted by gilders View Post
Alicia, so sorry to hear of your flare.
You can not blame yourself for this. I have Wegener's that affects multiple organs and I'm currently awaiting a kidney transplant due to Wegener's. Yet even though I have what could be considered an aggressive form of Wegener's, I've always tried to be drug free (after a long period of remission). I have had 4-5 relapses since I was diagnosed aged 17 (now 41) and perhaps if I'd of stayed on maintenance meds, maybe I wouldn't have had so many severe relapses and wouldn't be needing a kidney. Yet on the flip side, if I'd have stayed on maintenance meds, maybe I'd have died from cancer. We never know which is the best choice and neither do the drs, so don't blame yourself.

I do think if someone plans to stay on maintenance meds, then if possible change them every few years (azathioprine, methotrexate, Rituximab).
I had been on Azathioprine for many years and developed immature, odd-shaped, red blood cells. After stopping Aza and moving onto RTX, my red blood cells were checked 2 years later and had returned to normal shape.
My Wegener's specialist is happy for the kidney transplant to go ahead, but is concerned about me picking up a fatal infection. Usually transplant patients have an increased risk of fatal infection, but my risk is considerably more due to many years of immunosuppression. So coming of maintenance meds has been beneficial for this reason.
After both myself and my son being on azathioprine, methotrexate and Rituximab we would pick Rituximab every time of these three. So far it has proven to be far less toxic and more effective. This is backed up by solid research as well.

But goodness gracious Andrew, facing a Kidney transplant with your doctors concerns has got to be very stressful! Please let us know how this goes.Are your immunoglobulins running low?

You are right when you mention the concerns of cancer (for patients on Cyclophosphamide especially). From what little I can gather the risk is not increased for those taking Rituximab. Good luck on continuing off the maintenance meds.