Inmuron
 

In trying to do something to feel better, I have agreed with my Nuro to try Inmuron. I know the side effects. Can anyone tell me of any benefits. Would like to hear from anyone.
Thanks FREDH

I have been on Imuran for about 3 years (Cellcept for 10 years before that) and haven't had any side affects. I get checked annually for my liver function (quarterly for the first year) and so far, no problems.

I can't point to specific areas where I feel better because of Imuran, but I do know that when I am not on an immunosuppressant, I feel weaker overall and have a great deal more trouble breathing.

Just to give you the full picture of my meds, I take mestinon 60mg twice a day, mestinon 180 timespan at bedtime, IVIG bi-weekly and Imuran, 200 mg/day split am/pm. I am also trying a Rituxan infusion every 6 months, and so far it is definitely helping.

I think it is definitely worth a try, but don't expect immediate results. It can take 3-6 months for the benefits to be felt.

Good luck on your decision!

I have just been on it for 3 months myself. I can't say I have or could site benefits directly, but the way the doctor decried it made sense. You have only so many receptors and so much ACH. When antibodies attack they end up damaging the receptors and sometimes they are permanately damaged. Mestinon helps to put more ACH in the system but your body may just produce more and more antibodies. Imuran helps keep the body from making so many of them. It makes the other meds work easier... the side effects are my concern too. Hopefully the benefit outweigh the risk. So far I haven't been back to the hospital like I was repeatedly without imuran. Maybe it's starting to help???

I concur Goodluck with your decision. I would make sure you have all the antibody testing you need before you do start imuran. Once you do then they can't use that to pinpoint issues. Specific personal example with NGCC. I had a positive test and then started imuran. Then Mayo wanted me to redo it and wants me to stop all antibody meds to know if it's LEMS or MG. I am now several months from that if my doc decodes to follow that plan. It would have been nice if....

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Inmuron
 

Good luck to you too. I hope it is working for you. Keep us posted
FREDH