imuran

[michael99]

saw one of my docs recently. He recommends that i stay on azathioprine for several years due to my kidney involvement with WG. it was comforting understanding the risks/benefits of the drug vs. the potential flare up in the kidneys. have any of you been on azathioprine for a long time?? have you flared being on the drug??

[andrew]

Hi there
Yes up until a few weeks ago I was on Imuran/azathioprine. Was on it for at least 5 years. No flares at all while on it. Most find it very easy to take although some not so much. No side effects for me while on it either.

[Sangye]

Michael, you really should see a Wegs specialist. Taking a chemo drug for years may or may not be necessary. JanW has some good info about this that she learned at the VF Symposium a few months ago.

[elephant]

Micheal, how is your kidney?

[Geoff]

Hi Micheal, I have been on Azathiaprine (150mg daily) since January with no significant flareing but 'grumbling' wegs these past couple of months. I am struggling to cope with an increase of doseage to 250mg (nausea, stomach issues etc!).

[JanW]

The basic information from the Symposium is that there is an increasing feeling the chemo drugs may not be maintaining your remission -- that is, it may be that once you get your disease under control, you are able to remain drug free for long periods of time. I met someone at the Symposium who was drug free for 25 years -- although in the midst of a bad flare -- and meeting people who were drug free was not that uncommon. One of the nephrologists who spoke said that it was a little bit like taking the same antibiotic every day for 25 years to avoid two sinus infections. Is it worth it? Could it ever be, particularly given the long-term effects of chemo use (e.g. increased risk of cancer).

As another data point, my ENT, a renowned Wegs specialist, only repairs saddle noses for people who have been drug free for at least six months, and, until recently, it had been a year. He has done hundreds of these surgeries. So someone is meds free, but it's probably also not the person treated by the local rheumy who thinks that chemo is the only way to maintain a remission.