Question for you experts out there--
I went to my rheumatologist today for follow up. (DX Apr 2015 with WG, lung and kidney involvement, in addition to sinus, ears, eyes, etc...).

At its highest, my creatinine was over 8. It's down now to just over 2.0 and appears to be holding steady, although I still have blood and protein in my urine. All other counts looks good. Lungs and eyes good. I never needed dialysis.

I asked him what happens should I be lucky enough to get this disease into remission and he said another year on Cytoxan.

I have been reading everyone's posts here and it seems like most doctors have moved away from the long term cytoxan. I do understand that I have significant kidney damage even if this gets into remission, and that maybe cytoxan IS the most appropriate for me.

My rheumatologist worked with Dr. Fauci in the 80s at NIH and was involved in the development of cytoxan as a treatment for WG--but it seems like newer research shows that other drugs work as well if not better.

Can you tell me about your experiences? Point me to research that I can read?

I am working with a nephrologist as well and I will ask him next time I see him. He is newer to the field and I'm curious what he thinks as well. The two (neph + rheum) do not work together (separate issue to be dealt with later).