new meds
 

I just saw my new neurologist in Iowa City and she is taking me off of the CellCept im on and putting me on Immuran. Is there anyone who takes or has taken it and can tell me what it does to your body vs how much it helps?

My Neuro went just the other way. They started me on Imuran then switched me to CellCept. I was on Imuran for 12 months. It made me very sick and I lost 35 pounds. But actually the Imuran worked and we did not know it because the side effects were so bad. Imuran works for a lot of people it just did not work for me keep that in mind. The main side effect was nausea. The last few months I was eating about 500 cal a day. When I went off Imuran and switched to CellCept my doctor apologized and said he knew Imuran was making me sick. The reason we know that the Imuran was working was when he tapered me off after two days I was Superman which lasted about six weeks. I wish you the best the luck and hope it works for you.
Mike

I've been on Imuran for almost ten months. I haven't noticed any side effects. I think it's finally starting to help.

Abby

Abby that is wonderful! I'm so happy for you.
Mike

I also am on imuran. Ive been on it for a year and a half. It works a little bit for me but not.enough to be the only med i use. No bad side effects tho.

I now take imuran 275, prednisone 50, prograf 10, and ivig and still have persistant symptoms. Good luck man

Wow good to hear from you Tyson. I was worried about you. You haven't posted in a while. Hope this finds you doing well!
Mike

I am on Immuran since November 2011 and have not seen any real side effects. Haven't posted in a while because Jan. 15 I had emergency surgery for a perforated gangrenous gallbladder. I never had any symptoms that I know of proir to this. If not for the MG, I would be well now. It is taking me a long time to get my strength back. I had a terrible time convincing the nurses to call my neurologist and pulmonologist but they finally did and I was started on IV Neostigmine and Iv steroids. The nurses just don't know. My ph dropped to 7.25 and I had to be on bi-pap for about 48 hours(good old mg). It is by the grace of God that I am here today and I thank him for that.

Thanks, Mike! I have been noticeably better, but I'm not quite sure it's the Imuran. I've been giving the old Mestinon another try, this time at lower doses (30mg no closer than five hours apart). So it may just be the Mestinon, though it never worked for me before--but maybe I just never took small enough doses.

But the Mestinon is starting to give me a pain in my left eye, which I remember from before, when I used to take it regularly. So I'm going to take a Mestinon break, and then I'll have a better idea if this surprising period of relative strength is the Imuran finally kicking in. I hope so! I took my kids to a children's museum the other day, something I never would have tried a couple of months ago. Sure, I'm still recovering, but still!

Abby

I just wanted to say that I hope it works well for you.

Ditto, Tyson, I hope you're doing ok.

Iwasanurse, I'm sorry, forgot your "real name" You are VERY lucky you were okay. Have they checked your liver function?

Brian, good luck with the switch. Make sure you have the TPMT test BEFORE you start Imuran!

Annie

Thanks Annie. After 7 days of the hospital, I am recovering slowly. I see my primaty doc on tues and he is going to liver function studies again.