Can anyone tell me about Imuran (azathioprine?)

Can someone tell me what Imuran is and what is it supposed to do

I'm sorry that you don't seem to have received any responses to your question, Mikemc. I did a search for you and found a rather comprehensive article from National Institutes of Health that you might be interested in.

This section gives a partial answer to your question, I think:

Azathioprine

Although anecdotal reports have indicated that azathioprine is an effective therapy for CIDP [McCombe et al. 1987; Barohn et al. 1989], one randomized study of only 9 months duration showed that the degree of improvement with azathioprine combined with prednisone was similar to prednisone alone [Dyck et al. 1985]. However, the immunosuppressive effects of this agent may not occur for over 1 year, as previously noted, and therefore the duration of this trial was too short to exclude benefit. Others have found that azathioprine is helpful in some patients not only for stabilizing the disease course but, more importantly, for allowing reduction of prednisone dosage. Therefore, azathioprine is used ideally as adjunctive therapy for CIDP as a steroid-sparing agent. The usual dosage is 2.0–3.0 mg/kg/day administered orally as a single daily dose. A test dose of 50 mg/day may be given for the first week. If this is tolerated, the dose is gradually increased by 50 mg every few days. A compete blood count and liver enzymes should be monitored monthly for 6 months, and then every 3 months thereafter. An acute hypersensitivity reaction may occur in the first several days to weeks of therapy characterized by severe nausea and vomiting, diarrhea, fever, malaise and myalgias, rash, elevation in liver enzymes, and pancreatitis; these adverse effects are reversible upon discontinuation of the drug.

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Thank you for the info on Imuran . I have been on it now for seven weeks with no change in my condition/symptoms. I start plasmapheresis in 2 weeks. I had 9 months of IVIG in 2014 with no improvement.
Mikemc

Hello, I was diagnosed with GBS back in June of 2015. I have needed plasmapheresis treatments every week since then. I tried Ivig and it did not work for me. My neurologists are currently considering putting me on an immeno-suppressant. I do know that it takes at least 3 months for the medication to start effecting your system. I hope this helps.

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Hi Mike,

First, let me tell you what I know about Imuran. It is a medication which suppresses the action of your immune system. Since CIDP results from an immune system which is overactive, at least in some regard, tamping down it's activity can relieve the CIDP. At the same time, it will make you more prone to infection, so you will need to be more vigilant than usual to avoid infection. It will also reduce the formation of platelets, which are involved in clotting. It is a tablet, and you might get it under the generic name azathioprine.

Now, my experience. I was on IVIG, three days every three weeks, for a couple of years. It worked for me, but was extremely expensive, and a real hassle to deal with. My neurologist suggested trying to make the transition to Imuran. He told me that it would take six months to have an effect, so it would be some time before I knew if it was helping. So, I started the Imuran. After a few months, I noticed that I was feeling better between IVIG treatments. So, I lengthened the interval between treatments to 4 weeks, then 5, then 6, and eventually I was off my IVIG altogether. I was on Imuran alone for a couple of years. Finally, I took the big leap, and slowly got off the Imuran, too. Now I am not taking anything for my CIDP. So far, so good.

This makes it sound like the Imuran definitely suppressed the CIDP. But, as my neurologist says, we don't know if the Imuran was really doing the work, or if my CIDP just "burnt itself out" as it sometimes does. All I can say is that my experience was good, and it appeared that the Imuran worked.

My biggest recommendation would be: be patient, and don't expect big results overnight. I know that is hard to do when you can't even climb stairs, but that seems to be the way Imuran works.

Good luck!

Bill

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Uncle Bill said:

Hi Mike,

First, let me tell you what I know about Imuran. It is a medication which suppresses the action of your immune system. Since CIDP results from an immune system which is overactive, at least in some regard, tamping down it's activity can relieve the CIDP. At the same time, it will make you more prone to infection, so you will need to be more vigilant than usual to avoid infection. It will also reduce the formation of platelets, which are involved in clotting. It is a tablet, and you might get it under the generic name azathioprine.

Now, my experience. I was on IVIG, three days every three weeks, for a couple of years. It worked for me, but was extremely expensive, and a real hassle to deal with. My neurologist suggested trying to make the transition to Imuran. He told me that it would take six months to have an effect, so it would be some time before I knew if it was helping. So, I started the Imuran. After a few months, I noticed that I was feeling better between IVIG treatments. So, I lengthened the interval between treatments to 4 weeks, then 5, then 6, and eventually I was off my IVIG altogether. I was on Imuran alone for a couple of years. Finally, I took the big leap, and slowly got off the Imuran, too. Now I am not taking anything for my CIDP. So far, so good.

This makes it sound like the Imuran definitely suppressed the CIDP. But, as my neurologist says, we don't know if the Imuran was really doing the work, or if my CIDP just "burnt itself out" as it sometimes does. All I can say is that my experience was good, and it appeared that the Imuran worked.

My biggest recommendation would be: be patient, and don't expect big results overnight. I know that is hard to do when you can't even climb stairs, but that seems to be the way Imuran works.

Good luck!

Bill

I have had CIDP since 2006. I had IVIg for years wirh no lasting benefit. Then came the Epidural steroids. Temporary benefit as with IVIg. Two independent consults including Vanderbilt: CIDP confi med at both. IVIg again. No help. Then IV steroids: miraculous at first, then nada. Repeat EDS x3: one great result. Now they recommend Imuran and Mexetil. Hesitant to take both at once. If works, which one worked. Scared of Imuran! Declined in 1979 for Hepatitis, declined in 2008 for Hepatitis C. Now recommended for my CIDP. I’m mor afraid now of pot ntial lethal side effects at my age (81). Any ideas, thoughts? BTW, I’m retired MD. BobN

This is so timely! My 21 year old daughter started this last night, and we haven’t fully investigated it yet.

Dear Bill, can you tell us about your actually situation? I am on imuran about 5 month and I hope that will be some good results. Thank you !