My husband's story

[Jack]

Sheila - are you saying that he has been on cyclophosphamide for a year and they intend to keep him on it even longer? It is a highly toxic drug with long term implications for serious side effects that do not go away when you stop taking it. The effects are cumulative and he may need to use the drug again if he has a flare in the future. Take it for too long and it will not be available to safely use again. I have pretty much used up my own allocation and will be hunting for an alternative if I need to stop a flare.

The usual regime is to switch to something like azathioprine after about six months.

[Sangye]

Sheila, I second what Jack said. Ctx is never used to maintain remission-- only for the first few months of highly active disease, to get it in remission. Then they switch to something milder like azathioprine, methotrexate or Cellcept.

I've never heard of someone being kept on ctx once they're in remission, much less for an additional year. Given the incredible toxicity of that drug, I would seriously question the recommendation from those docs and get a second opinion from a Wegs specialist. Do you know how to find one?

[Sheila Schembri]

Sorry brain fart. He was on Cyclo for over almost two years (we do worry about that). He has been switched to Imuran which they tell us is safe with no long term effects.

[Jack]

Imuran (azathioprine) is indeed much safer, but after a while, he should be moving on again to something like Cellcept.
I can hardly believe that he was kept on Cyclo for two years, but there is not much you can do about it now.

[Doug]

Is he under the care of a WG specialist or a regular doctor? The Ctx usage is plain wrong! Sheila, please use this link to locate a WG specialist. Others on this site have called doctors listed and have had good results in locating specialists within their area.

Front Page | Vasculitis Foundation

[Sangye]

Please tell me he isn't still under the "care" of the doctor(s) who kept him on ctx for over 2 yrs.