Advice on Imuran

    • Anonymous
      May 10, 2007 at 3:01 am

      I just recived my second round of IVIG (five treatment in five days). The dr. prescribed Imuran to be taken immediately, then bloodwork to check liver enzymes, then increase the dose. In six weeks I go back for another EMG and dr. visit. The first time I had IVIG treatments I had a slow increase in strength for about six weeks followed by a gradual return of my symptoms, though not as severe as before the IVIG. I think he is trying to control my symptoms without having to have the IVIG every two months or so.

      This seems like a fairly heavy-duty drug; it scares me because it suppresses my immune system.

      Has anyone else taken it; if so, did you get good results?

      What are the side effects?

      Thank you all…
      Sheila in WV

    • Anonymous
      May 10, 2007 at 4:52 am

      Sheila imuran (azathioprine) is a very commonly used immuno-suppressant especially in transplants, I see renal transplant patients on immuran every week. It is a commonly used second line therapy in auto-immune disorders, many neurologists use it routinely in C.I.D.P. either before or with steroids.
      The side effects are rare,but are the usual bunch of nausea, dizziness, fever,vomiting, diarrhoea, joint pain, skin rash, liver toxicity also rare nephritis and excess marrow supression; these last three are detected early by routine blood tests. Don’t let the side effect list put you off, they are rare but have to be listed by law and each pack of drugs will have manufacturers details and side effects included with it for the patient.
      I had immuran for CIDP, it did not benefit me so I had prednisilone, mycophenolate, cyclosporin and finally Rituxan. DocDavid

    • May 10, 2007 at 7:09 am

      Sheila,
      I’ve been doing Cellcept 1000mg twice daily for a couple of years now, it’s the same type of drug as immuran as it suppresses the immune system. So far all of my blood work has come back fine. I try and avoid sick people plus take a b-complex to help from catching colds, flu, etc. I’m still having to do the IVIg every 6 weeks but have been able to tell a difference with taking the cellcept as opposed to doing the IVIg alone. I haven’t had any of the nasty side effect so far and I make sure to do the blood work so if any problems do come up we know right away. Hope that helps alittle.
      Pattie

    • Anonymous
      May 10, 2007 at 11:52 am

      Sheila,

      A personal friend of mine has CIDP, was on Imuran and decided that they didnt think it had any effect. They went off it for about 2 to 3 months and things went downhill from there. The neuro explained that he believed it really was necessary for him and so he started taking it again …. Needless to say it has really helped and I have never heard of him complaining from any side effects. I know this is a second hand story, but I know all the ins and outs of his CIDP, and whatever the reservations were when he initially stopped Imuran, he certainly doesnt have them now.

    • Anonymous
      May 10, 2007 at 5:08 pm

      Thank you to all who have posted responses concerning the Imuran. Have I mentioned that I love this site and am very grateful for all who post? Looks like the road ahead is a bit curvy; I’ll take it one drs. visit at a time.

      Sheila

    • Anonymous
      May 14, 2007 at 11:32 pm

      Hi,

      I have been on Imuran for about 3 months now and compared to the other immunosuppressants I have been on (cyclosporine, steroids, cytoxan, rituxan) I really like it. I feel good and my body must be reacting well to it because I am stronger then I have been in the past 4 years, and I am even starting to have menstral cycles again, which the other drugs suppressed.
      Good luck, and I hope this works for you.

      Emily

    • Anonymous
      May 20, 2007 at 3:52 pm

      I was on imuran for over a year without any side effects. It did stop the relapses for me. I have not had a relapse since 1998, so I feel very fortunate.