Imuran

[MikeG-2012]

Mike I've been on it since Nov 30th and I'm still losing it. Sorry to say.....

i started about the same time Cindy, and mine is still thinning.... <sigh>

[gilders]

Been on 200mg Imuran for 5 months. My hair may have thinned ever so slightly (really not sure if it has at all), but certainly nothing like what happened when I was on cyclophosphamide when it didn't just thin but dropped out leaving next to no hair.
I'm suffering a lot with side effects from my current meds, but I think most are due to Pred rather than Imuran, but it's not always easy to know which meds are causing the problems or if it's Wegener's itself.

[greenjeep]

I am on cyclophosphamide infusions now and there is talk of using imuran as a maintinance drug when I am done. My wife looked it up on the internet (not always a good idea, but our only source) and saw a couple of horror stories in cases where the patient had been in renal failure. I have been in renal failure, that why i'm doing the infusions now. Has anyone that has had renal failure relapsed with imuran? I was never able to take a full dose of methotrexate due to my liver labs. I saw Cellcept on this thread, what other maintenance drugs are used? Thanks for the info, we are just shell shocked from the renal failure episode I went through last year. Don't want to do that again!

[gilders]

Hi greenjeep.
When first diagnosed (19 years ago) with WG I had renal failure involvement (Dialysis 3 times/week and plasmatherisis sp? 2 times/week). I started on cyclo but it had to be stopped as I could not tolerate it. I had to be put straight on to maintenance drugs (Imuran and prednisolone) at very high doses. Imuran was the choice over methotrexate due to renal failure, i.e. Imuran was the safe choice compared to methotrexate.
At the time, rituximab wasn't available so Imuran was the only choice.
Although my kidneys are severely damaged I am not on dialysis now, but have been on Imuran for most of the last 19 years. My main specialist for treating my WG is also the renal specialist. Therefore if he's happy with me being on Imuran I can see no problem regarding Imuran and renal failure.

[greenjeep]

Gilders,
Thank you for this reply. It put me a little at ease. It's just that my episode with renal failure nearly killed me and now we look at everything as a symptom of my kidneys (paranoya). I am aware that everyone reacts differently to all of these drugs, but knowing there are others out there that have gone through something similar sure helps.

[Rose]

Some people cannot metabolize imuran and there is a test available to check before starting the drug though I think most doctors prescribe it and stop it if the side effects are bad. I was placed on Imuran as a maintenance drug following my initial monthly cyclophsphamide IV infusions. I was on 100mg daily and for 5 weeks and was absolutely fine. Then one day I was very nauseous about 2 hours after taking my tab in the am. Within a week I was suffering from bad bouts of nausea and vomiting lasting the whole day. Took a while for me to realize it could be the Imuran causing the severe nausea and vomiting as I had been fine for 5 weeks. I stopped for a week then started again on half the dose but again within a few hours I was vomiting again worse than ever. So definitely the Imuran. I then started on Cellcept in January 2009 and that has been keeping me in remission since with almost no side effects. I have also been told that because of kidney involvement methotrexate is not suitable for me.

Rose

[Jaypfei]

My Rheumy tried to replace prednisone with Imuran and it didn't work well with me. It caused liver distress for me.

[Auntie TooToo]

I was started on Imuran {along with Prednisone} initially after being diagnosed in 4/2013. However, my rheumy has had to stop my treatments on several occasions due to pulmonary infections. Currently she is rethinking putting my back on Imuran as they {rheumy, pulmonary & immunologist} are concerned that possibly it may not be appropriate medication for me. I have had a lot of gastrointestinal upset throughout all of this and it's had to say which specific medication {as I take so many} attributes to it; but I do know that when I am on the Imuran, the nausea/upset stomach was a problem for me constantly {vomiting not so much}. But remember, each person is different and how one medication affects one will affect some else differently. Take care and hope things go well .....

[darl-p]

I have been on Imuran for more than 5 years. I have exceeded the life time does with no known side effects. I was on Cytoxin first and had minor side effects that I would not like to experience again. I have asked about switching and was told that this is the best for the disease. I constantly monitor this site for other meds to research and quiz my docs on. My grandson was on methotrexate for another autoimmune disease and stopped due to the side effects.