• Anonymous
      May 24, 2011 at 3:22 pm

      Is anyone on imuran or its generic ? My Dr.s been bringing it up and I need some personal expierience from those that actually use it. Thanks!

    • Anonymous
      May 24, 2011 at 4:13 pm

      Yes, I m taking the generic form of Imuran. The name is azathioprine.

      My doctor added Imuran about 6 months after I started IVIG. I started at 50mg per day for a month. then 100 mg per day for a month. then 150 mg a day for about 9 months when I raised it to 175 mg per day.

      Other forum members have cautioned using Imuran. Hmmm, let me think. No, I’ll look it up on line. Searching this forum is time consuming and tedious when you don’t know the exact words used.

      Maybe it was this “…associated with abnormal AZA metabolism, is linked to the thiopurine methyltransferase (TPMT) genetic polymorphism. …”

      Yes, there is a blood test for the condition “[I]…Thiopurines are a class of drugs that suppress the immune system. Examples include azathioprine, mercaptopurine, and thioguanine. These medications are used to treat diseases such as acute lymphoblastic leukemia, inflammatory bowel disease, and autoimmune disorders. They may also be prescribed to patients who have had organ transplants to help delay or prevent organ rejection. This test detects the activity level of the enzyme thiopurine S-methyltransferase (TPMT) in a person’s red blood cells. The activity level of TPMT is associated with the ability to effectively metabolize thiopurines. …[/I]”

      In my case, I believe the testing was done by way of the slow titration to full, that is full ivig suppression dose, not full kidney transplant dose. The starting Imuran dosage for preventing rejection of a kidney transplant is 3 to 5 mg per kg once a day. In my case that would would be 3-5 times 80 or a daily dose of 240-400. so, you see, even 175 is well below that.

      Keep the significantly lower dose in mind when you read about Imuran side effects.

      It is expected to take 6 months to one year for the full effect to be noticed. Then, if I’m lucky, my IVIG can be weaned to zero.

      Your doctor should order CBC (complete blood count) to monitor your blood counts (white, red, lymphocytes, etc) and CMP (comprehensive metabolic panel) to monitor your liver enzymes. When the doctor orders the tests, I recommend you inquire about levels he is looking for. That way, you can also look for them.

      good luck

    • Anonymous
      May 24, 2011 at 5:20 pm

      Thanks for the info. I worry cause I have several cancers in my family and partially afraid of them being able to grow more readily.

    • May 25, 2011 at 10:33 am

      I have been on Imuran for 8 months now. I am 3.5 years into my CIDP with a very active immune system (so my Dr’s say).
      The Imuran took a good 3-4 months to kick in but it has really helped me. I find it allows me to go into my IVIg treatments with very good strength.

      I have been on 5 days of IVIg every 5 weeks with a dosage of 0.8 gm/kg (which is double the normal dose) for 2 years now. Until I started Imuran I would go into the treatments very weak, unable to open a water bottle, bag of chips, unable to walk normally, leg muscle pain, etc…
      Since Imuran kicked in (I’m currently at 150 mg, on way to 200 mg) I don’t have any strength issues and have even been able to drop to “just” 4 days of IVIg. Dr’s will begin “tweaking” my IVIg a little.

      On the down side…..Imuran has not helped at all with the “stingers”, buzzing, numbness (eg “PAIN”) associated with my CIDP. I have to take other drugs to try and combat this issue (none really help). Only IVIg stops me from tearing my skin off after 5 weeks, so I can’t imaging going any longer.

    • Anonymous
      June 4, 2011 at 9:36 pm

      Thank you for responding also! Still sitting on the fence, some descisons are harder than others I guess . 🙂

    • Anonymous
      June 6, 2011 at 3:22 pm

      My Daughter just started the above drug about a month ago, Her condition
      is Crohns. Her Doctor’s daughter is on it as well, and is doing good with it.
      We are doing weekly Blood works to monitor the effects on her, so far so good. I wished it wouldn’t take so long to know if its working though. she had to swallow a camera to identify and confirm her issue, and that puppy hasn’t come out yet.

      I may enter on this sometime in the future due to IVIG is just keeping me at bay. Getting loads for 2.5 years now, fully funtional with residuals. setbacks in the winter. –tim–

    • Anonymous
      June 6, 2011 at 4:14 pm


      Here is the connection-

      From Wikipedia, the free encyclopedia

      The thiopurine drugs are purine antimetabolites widely used in the treatment of acute lymphoblastic leukemia, [COLOR=”SeaGreen”]autoimmune disorders[/COLOR] (e.g., Crohn’s disease, rheumatoid arthritis), and organ transplant recipients.

      Metabolism is catalyzed by S-methyltransferase.[1]
      [edit] See also

      6-Thioguanine (6-TG)
      6-Mercaptopurine (6-MP)
      Azathioprine (AZA)

      Now, I have satisfied my own curiosity. Why I’m curious? Here is what ‘they say about Mercaptopurine (Labeled Use)

      “[I]CAUTION Mercaptopurine is a potent drug. It should not be used unless a diagnosis of acute lymphatic leukemia has been adequately established and the responsible physician is experienced with the risks of Mercaptopurine and knowledgeable in assessing response to chemotherapy.[/I]”

      Well, gosh, we all are on something a responsible physician has given us, right?


    • Anonymous
      February 3, 2010 at 11:31 pm

      just moved back to nj after being gone for 22yrs so i had to go thought the whole process of finding new doctors, so far i have been lucky with my new doc’s. BUT my new gp had some concerns about me being on imuran. i have been on it since i began IVIG in 3 of 2006, his concerns were the long term effects and cancer, dose anyone know anything about this?

    • February 3, 2010 at 11:55 pm

      Yes that is a risk, however, you have to investigate and decide if the risks outweigh the benefits. If nothing else works for you, ivig, pp or whatever you may have tried, imuron may be your choice. It is a very difficult decision that only you can answer based on your progress while on the drug. Good luck and glad you were able to fing a doc you like so quickly, that is so important, half the battle!!
      Dawn Kevies mom

    • Anonymous
      February 4, 2010 at 12:05 am

      Dose everyone who gets IVIG take imuran? and what exactly dose imuran do, i know it is an imunosurpresent but dont know exactly how it works.

    • Anonymous
      February 4, 2010 at 12:47 am


      Wikipedia has a good article on Imuran (azathioprine): [URL/][/URL]. Here is a link to prescribing information, which has considerable detail: [URL/][/URL]

      Yes, various cancers can occur. It is a trade-off between treating the disease effectively now and the risk of cancer later.

      Godspeed in making your decision.

    • Anonymous
      February 4, 2010 at 3:51 am

      Hi, Diane.

      I’m on 125mg of azathioprine daily along with 120g of Ig every four weeks. The aza suppresses my own immune system, and the Ig then provides a bunch of properly functioning immune cells.

      Aza is primarily used to stop organ transplant rejection by — you guessed it — supressing the immune system. Exactly how it does I’m not sure; my understanding is that it slows a particular type of immune cell but I’ve never studied the technicalities.

      Keep fighting,


    • February 4, 2010 at 8:18 am

      No, everyone that gets ivig does not get imuron. Some may have the progressiver variant of cidp as opposed to the relapse remitt type, sometimes it is more difficult to keep the progressive type under control w/out adding imunosup. drugs. Others get 2g/kg of ivig monthly, some every 2 or three weeks. Others get the 1g/kg maint dose, you have to experiment starting high, 2g/kg and work your way down and space out. One or the other or both at the same time (just my mom opinion, of course your body and doc know best) good luck!
      Dawn Kevies mom

    • Anonymous
      February 4, 2010 at 11:40 pm


      I took Imuran for several years, I am not taking it currently. It was a low dose chemotherapy. It is an immunosuppressant that will hopefully keep the immune system ay bay and keep the “attack” phase of the CIDP to a minimum.

      As with any drugs of this class, it is destructive and harmful, but that is how it works. Sometimes the medications are as hard on our bodies as the disease itself.

      I went through a period of deep financial difficulty and had to stop taking the drug. The next time I went to my neuro (a year later) he said he would never have taken me off of it, but since I had, and nothing had changed much, there was no need to restart it. So I didn’t and life went on.

      The best advice I could offer is to read as much as you can, ask questions, and then ask your Doctor. Intelligent patients help Doctors make intelligent decisions.

      Good luck