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Tell me about azathioprine/imuran

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Posted 3/29/2013 2:21 PM (GMT 0)
If you have been on this medicine, please share your experiences with me -- Has it helped you? Do you have side effects? How long have you been on it? What are the long-term risks? Do you stay on your 5-ASAs while taking Imuran?

This will probably be my next step if the Asacol and Rowasa do not continue to help me after I'm off pred. My GI just ordered the Prometheus test for me. Thanks all!
Posted 3/29/2013 2:49 PM (GMT 0)
Sara, you can also do a search to look up others peoples experience with this.

But when I started on 6mp (which is similar to Imuran), the side effects I got were headaches, mild nausea, fatigue and mild hair loss. Once my body got used to it, the side effects went away. It's extremely important to be closely monitored via blood work while on these meds.

Personally for me, 6mp didn't work like it should which is why I'm on Remicade. I couldn't get into the therapeutic range - I always stayed at the low end. It kept me out of severe flares but I was still having daily symptoms. I was on my Colazal along with the 6mp. I was also on Colazal and 6mp when I started on Remi. However, I had to stop the 6mp shortly after starting Remi because I was developing foot neuropathy.
Posted 3/29/2013 2:50 PM (GMT 0)
I'll be watching this thread too as 2 GI's now have brought up Imuran... not wanting to there but seeing my flares last about a year... maybe 5-ASA's just aren't cutting for me either...
Posted 3/29/2013 2:52 PM (GMT 0)
I've been on 6mp (very similar to Imuran just metabolized slightly different) since the end of January 2013. I had a flare at the beginning of this year, and my GI prescribed both prednisone and 6mp to help me combat the flare.

Prior to the flare, I was on the maximum useful dose of the ASA5's (5 grams a day of lialda plus a nightly 4g Rowasa). My GI had suggested several times prior to the flare that I should go to 6mp because the ASA5's weren't enough (every scope had shown some inflammation, and the extent of my disease had spread). It took this flare for me to finally take the plunge, so to speak.

My experience so far has been great. No side effects to date on the 6mp. Just side effects from the Pred which I am tapering off of (currently at 15mg). It seems I've finally turned the page on this flare and nearly back to where I was before the flare. I have a flexible endoscope on Tues and he will check to see where the inflammation is at, and hopefully give me the okay to get completely off of the pred within a few weeks after that appointment. I am hoping I will continue to heal and get into remission with the 6mp. We'll see in the months ahead.

There is, of course, regular blood work. I had weekly CBC blood tests, and a monthly Liver Panel test to contend with at first. I think monthly or tri-monthly tests going forward from here.
Posted 3/29/2013 3:06 PM (GMT 0)
That's great, iPoop! I hope it continues to help you. Let us know how your scope goes.

Thanks for your feedback, Red!

I've been "mostly" in remission for the majority of my time with UC on Asacol and Rowasa, with some flare-ups here and there that were treated with increasing the Rowasa. I always had at least 3-5 BMs daily that whole time though until I went on pred -- now I'm completely normal with 1 BM a day. So, my new GI said it's unlikely I'll remain at the 1 BM per day once I'm off the pred. he said I might go back to my 3-5/day, which I really didn't find to be that big of a deal. I mean, yeah, I'd prefer one a day but I have to weigh the risks and benefits of going on azathioprine or Remicade against the risks/annoyance of having very slight inflammation.
Posted 3/29/2013 6:11 PM (GMT 0)
No side effects. No idea how its helping since im on lots of stuff. But in theory i think its holding off my immune system from fighting thr remicade.
Posted 3/29/2013 6:24 PM (GMT 0)
Why there is so paranoia about Imuran? Just because it is immunosuppressor?

I have been on Imuran for about 5 years now. I have no problem whatsoever. I hate that venipuncture all the time, so now I check liver enzymes once in 6 months. Alls is well. Recently liver enzymes were erratic but mainly because I have been on and off Pred for last 2.5 years. That made my liver fatty and until the liver is not back to normal, those results will be erratic.
Given option between Remicade and Imuran, I will choose Imuran.

When I started this med, the GI freaked me out about immune system suppression. Don't go to crowded places and sort. Practically, it was not possible (because I used to take public transport to work) and never got sick. All infections that DS brings from school, he successfully infects mommy but not me. This is the first time, he infected me with runny nose.

And if you are among the unlucky ones, you will notice as soon as you start and then you say bye-bye.

Also perform a search on this forum. This question keeps coming on regular basis. May be mods should make a sticky thread on this topic.
Posted 3/29/2013 6:49 PM (GMT 0)

deltaforce said...
Why there is so paranoia about Imuran? Just because it is immunosuppressor?

Seriously, I've seen other threads here where people say "I'd never ever go on that" and such. Yeah there are risks with any medication that you put into your body. But if you look into the statistics and odds of getting the nastiest side effects of Imuran (like lymphoma) they are about the same as your odds of dieing in a car crash. You just have to put things into perspective, and with routine blood monitoring the odds are further reduced as anything like that would be caught early.
Posted 3/29/2013 7:12 PM (GMT 0)
I had trouble last summer. I still don't know if it was the Imuran, prednisone, or what, exactly. My hair fell out, I had overwhelming sinus pain, and I caught the cold of the century. That was as sick as I have ever been.

So far, this time around, I have not had any of these problems, and my Imuran dose is double.
Posted 3/30/2013 12:20 AM (GMT 0)
I have been on imuran for over a year now (200 mg). I have had no side effects from it, but it doesn't really work for me. I had to go on Remicade as well, but still not in remission. It does work for some though! Worth a shot! Good luck.
Posted 3/30/2013 2:19 AM (GMT 0)
I'm on 200 Mgs, has gotten me about 80% healed, but not full remission. No side effects, just nausea when first starting it and I get a little tired so I take it at night. Blood work has always been good, but I have also been on pred the entire time I have been taking this, so it might not be as effective as I thought
Posted 3/30/2013 2:32 AM (GMT 0)
Delta, mods can not put up stickies. Only the admin can do that. However, we can add to the resource section so when I have time I will do that. :)
Posted 3/30/2013 5:40 AM (GMT 0)
125 mg Azathioprine here for about 7-8 months. It seems to be helping but tough to say. I have had no side-effects.
Posted 3/31/2013 9:18 PM (GMT 0)
Thanks all. I appreciate the replies. Not sure what to do. He also said I could try Colazal if I wanted to but I don't know if it would help better than Asacol has.
Posted 4/1/2013 12:55 AM (GMT 0)
I just tried Imuran, I was on it for about 6 weeks, didn't have any side effects at the beginning, then last week, I got severe nausea, and it got me sick, I could practically not function, tried to call in the GI but didn't get a response, so after 4 days of feeling this way to the point of freaking my hubby out, I stopped it, and im getting back to feeling better. im seeing the GI Wednesday, ill see what he has to say !
Posted 4/1/2013 4:51 AM (GMT 0)
Malkavian reported success with Azathioprine. She hasn't posted in a while, probably due to grad school burdens-- but she would give you solid advice on it. What was your new gastro's rationale for trying Colazal? Has your right colon become less of a problem than with previous flares? I'm asking because Colazal is considered to be more effective at treating left-sided UC inflammation. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/1/2013 2:23 PM (GMT 0)
I'm not entirely sure. He just said that some people have better luck with Colazal because of the different pH levels in people's body and whatnot but since Asacol had been helping me that probably wasn't an issue for me. I haven't had a full scope in 6 years. Had a sigmoidoscopy end of August. New doctor wants to do a full scope in a few months to check things out and make sure it's not Crohn's, etc. The last few days my BMs are back up to 5 a day with some looking healthy and others pencil-thin. I don't understand how within the same day I can have some that are normal and others super thin. I am upping my Rowasa back up to nightly. Cross your fingers for me. I really, really don't want to get super sick again. I feel really good today so far. I had a night last week where I got barely any sleep so maybe that messed things up a bit. I've finally got my fitness levels back up and I just started doing a bunch of 5K races, and I'm training for a half marathon in September, so I better not get super sick again or I will be extremely bummed. I just want to feel normal.

Sorry to hear that, viviane. I hope you get to feeling better soon.
Posted 4/2/2013 4:52 AM (GMT 0)
Colazal is not pH-dependent; Asacol & Apriso are. It may be that your doc had Apriso in mind, but said "Colazal" absently. (Both made by Salix!) Apriso activates in the colon at a lower pH-level than Asacol requires; therefore, some UCers not helped by Asacol do get relief from Apriso. (But I doubt that pH-level would be causing you a lack of response to Asacol at this point in your UC history.) In any case, Apriso might work for you-- as it does for Fruitgirl, who also had pancolitis & achieved remission with Prednisone. If you try it for a month or so and it doesn't help, then you'll have a more clear-cut reason to consider Azathioprine. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/2/2013 1:41 PM (GMT 0)
Oh, he meant the Asacol is ph-dependent but that since I never had a problem absorbing it it probably isn't an issue for me. He was just listing all my options and said if I wanted to I could try another 5-ASA like Colazal to see if it would help me more. I only had one BM all day yesterday and no symptoms and am fine so far today.
Posted 4/18/2013 1:45 AM (GMT 0)
Anyone else have input or data on the side effects risks? I cant remember the stats my doctor told me.
Posted 4/18/2013 2:13 AM (GMT 0)
Hey Sara - I didn't have any side effects with Immuran whatsoever. about the only thing I can think of is a bit of a breakout in Acne all of a sudden when I started taking it, but really that probably came from the Pred, not so much Immuran - or the two of them combined at that time.

I tend to be a non-responder to Immuran and Methotrexate - or they have a very minimal effect on me and don't keep me out of a flare. They do however both reduce the inflammation and severity. So I'm just guessing, but perhaps Immuran would be good to try as a maintenance therapy for you if you're feeling pretty good these days.
Posted 4/18/2013 2:30 AM (GMT 0)
Viviane, I wish I had read this last Saturday! I started Imuran march 2012 at 75mg. In June 2012, my dosage went to 150mg which is the upper end for my weight. Helped some at first. Tapered off Pred in January. Once off the Pred, I noticed that I had these sudden exhaustion attacks where I simply could not function. Sudden, " I have to go to bed NOW" moments. Then I started waking up with lower back pain each morning that I wrote off to sitting at my desk too much. Blood gradually started appearing in the toilet. This past weekend everything tanked. Bloody bowel movements, back pain, and totally incapable of doing anything. Spent Sunday in the ER barely aware of anything. Tests showed liver a touch over the upper limits. I was put back on Pred and was told to continue the Imuran. I decided that Imuran did not keep me in remission so I quit taking it. I feel better today than I have in an extremely long time! My back has not hurt since Sunday, my urine is clearer, my flare is about gone. I am sure it is because of the prednisone, but I am also sure that the Imuran was causing some of my problem. Those exhaustion moments are overwhelming. It feelslike you are about to faint, but you never do.
Posted 4/18/2013 12:21 PM (GMT 0)
I was on it for about 6 years, along with Asacol HD. It stopped the flares but I still had daily symptoms of the disease. I was sick all the time - picked up every bug my kids got. Eventually ended up w meningitis b/c my immune system was so shot (caused by a common and usually mild virus). I went off the Imuran, but flared badly after a few months, so started back up and ended up w pancreatitis.

Don't mean to scare you, my experience was especially bad, and I ultimately ended up w surgery when all the drugs failed. But it is a drug that can have serious side effects.

Alison
Posted 4/18/2013 3:29 PM (GMT 0)
been on Azathiaprine for, erm. two years now
Love it. a few minor cuts have been infected but other than that no side effects. I get monthly blood tests which have gone up and down, but I've genuinely never felt a problem other than the infections. The monthly blood tests ensure my immune system is still ok and my colds tend to take the same time as everybody elses.

Worth a try anyway. you just have to take care of yourself, wear suncream and the things you should do anyway.

good luck. for me it has definately worked. in remission atm
Posted 4/24/2013 7:36 AM (GMT 0)
Haven't had any side effects in the 4 months I've been on it, but I've had an infected ingrown fingernail and and ingrown hair on the back of my head. I soaked the fingernail and the infection cleared on its own, the hair was a bigger issue. Had to go on antibiotics and stopped the Aza/Imuran cold-turkey for about a week. No issues going right back to 150mg after though.

I will say when I went from 75mg to 100mg I was extremely tired for ~36 hours, but that went away quickly and might have just been part of me becoming more active. I'm still on pred but will be tapering off soon. I'm on the Aza purely for arthritis reasons. Lialda at 4.8mg pretty much cleared up my GI symptoms even before my colonoscopy but I had such awful joint pain I was started on 60mg Pred. I've felt great on 20mg pred 150mg Aza for about 6 weeks now, hopefully I can get off the steroids (or at least to a low maintenance dose) soon.
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