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can people share their experiences on azathioprine?

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Ulcerative Colitis
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Posted 1/8/2019 6:08 PM (GMT 0)
Hi all,

So I've just been told I'm going to have to start azathioprine as am struggling to taper off pred without re-emergence of symptoms sad also just got the wonderful news that I need to start another course of pred...

I'm pretty worried about starting aza as I seem to be someone who always gets side effects from drugs and am especially worried about the nausea and vomiting and other more scary ones. Can anyone give me any positive stories? I just want to get better from the UC. If you're on it has it helped?

Thanks so much guys
Posted 1/8/2019 6:54 PM (GMT 0)
Hi i have been on azathioprine about 18 months, never had any nausea or vomiting. I always take it immediately after dinner as this is supposed to help counter that side effect.
Posted 1/8/2019 7:00 PM (GMT 0)
I have been on 6mp since 2012 without side effects, either initial or ongoing.
Posted 1/8/2019 7:11 PM (GMT 0)
thanks smile do you both find it effective?
Posted 1/8/2019 7:24 PM (GMT 0)
Unfortunately, 6mp was not enough and I also added remicade. Been stable while taking both at once.
Posted 1/8/2019 7:46 PM (GMT 0)
Sadly not...it brought me from a pancolitis to left-sided colitis but the last 30-40cm or so of my colon are exceptionally stubborn and I'm working my way through different biologics to try to fix that.
If it helps, my friend's husband had a total remission on azathioprine, no symptoms and free to eat anything he wanted. After a few years of stable remission the hospital took him off it to see if he could manage without it ("to give his liver a break" according to my friend). Last I heard he started having some minor symptoms after a few months off azathioprine. I don't know how he's doing now.
Posted 1/8/2019 11:02 PM (GMT 0)
I was on it for several years. But my GI prescribed too high of a dose. And the medication started attacking my platelets, WBC, and bone marrow. When I went off of it, then put back on, I couldn't handle even the lowest dose. Even though it helped a lot and put me in remission, I constantly had migraines and looked pale.

So I switched to the medication I'm on now. Hopefully, it doesn't affect you as badly. You may have to give it some time though.
Posted 1/8/2019 11:19 PM (GMT 0)
Ribbon, I am looking at starting it too, I have also been struggling with tapering pred this time around. I have an appointment a week from tomorrow to set it up. I’ve had all the blood work done, so it is just a matter of meeting with the doctor and getting going. I just dropped from 40 today (also had a scope). Fingers crossed I’m not back up to 40 in a couple of days, but we shall see.
Posted 1/9/2019 12:24 AM (GMT 0)
I'm allergic to it. Breathing problems, super low blood pressure, weird fevers, dizziness, wild mental states, etc., and my lab results (liver) were downright frightening. Just make sure that you get your liver and kidney labs done even if you are feeling generally OK while on it. It works great for a lot of people, but unfortunately not me.
Posted 1/9/2019 1:23 AM (GMT 0)
50mg of Imuran didn't bother me at all, but when I went up to 100mg, it made me nauseous. I was taking it in the morning, so the GI suggested I take it before bed, and now it doesn't bother me at all. My body definitely has a harder time fighting off infection, though. For example, I had a small irritation (probably ingrown hair or something) on the back of my head that wouldn't heal and caused some cellulitis, so I had to take antibiotics. That's never happened before.

I think the bloodwork at the outset (and the increase in dose) has been the most annoying part of the whole thing. Oh, and I had to get a few new types of vaccinations since taking the drug makes us part of the population that is more at risk and thus needs to get things like a shingles or pneumonia vaccination. My arms did not like me for a while there.
Posted 1/9/2019 8:02 PM (GMT 0)
Hi, I probably had the experience with both Aza and 6mp. So I started Azathoprine about 2 years ago. Over the few weeks I was on it, a lot of head aches, nausea, and just general sickness. It never made any impact with my flare so it was easy to come off of it.

I tried 6mp about a year ago. First night on it, woke with during the night a few times, but no other symtpoms. Second night, woke up and vomited all night, went back to bed, and had no problems all day. Third night, same thing as the second night. Doctor took me off of it and that was the end of it. funny enough, i tried Pred in between these medicines and had literally zero side effects from it. funny how some medicines make some get side effects and others get no side effects.

You wont know if you get side effects until you try the medicine. maybe you get side effects, maybe you wont. just be honest with yourself and your doctor. if you take it and are hurting from it, speak up and let the doctor know that the medicine is making you sick.
Posted 1/10/2019 12:09 AM (GMT 0)
I recall Azathioprine working well for me in the past. No side effects. Unfortunately, something was off in my blood work so the medication had to be stopped. If you go on it, make sure you follow through with the regular blood work. Best of luck!
Posted 1/10/2019 5:24 AM (GMT 0)
I have Crohn's-Colitis but I think I've been on it for three years now - 150mg/day. Never had a side effects that I could say are a direct result of the Aza. All of my blood work over the years have been just fine. Funny when I think back because I was worried to try it. I started it while on a course of Prednisone as well. I was 'pred-dependent' as many are, where when you drop below 20/mg (I think) symptoms start to return/worsen.

Anyway, best of luck with it. Everyone is going to respond different, but you never know what is going to do the 'trick' until you try I guess.
Posted 1/12/2019 1:41 PM (GMT 0)
It was great for me till it trashed my liver too much to keep taking it.
I got really itchy if I got in the sun.

The second time we tried it, it didn’t work at all.
Posted 1/13/2019 10:22 PM (GMT 0)
I was on it as part of my infliximab treatment , i was taking it along side pred and was fine felt slightly tired when on it , but the minute i came of the pred i was so violently sick that i almost called an ambulance i was on 200mg a day and tapered down to 50mg ang was still sick , ive just been prescribed a new medication to c how i get on with it compared to the azaphioprine, the new one is called mercaptopurine fingers crossed its better .....
Posted 1/14/2019 3:33 AM (GMT 0)
Hello, i’ve Been on it for 4 weeks as well as steroids (tapering off) and Humira. I’ve had no side effects other than hair thinning which may or may not be from it.
Posted 1/14/2019 2:17 PM (GMT 0)

R85ERT said...
I was on it as part of my infliximab treatment , i was taking it along side pred and was fine felt slightly tired when on it , but the minute i came of the pred i was so violently sick that i almost called an ambulance i was on 200mg a day and tapered down to 50mg ang was still sick , ive just been prescribed a new medication to c how i get on with it compared to the azaphioprine, the new one is called mercaptopurine fingers crossed its better .....

Azathioprine metabolizes within the body into Mercaptopurine. Getting Mercaptopurine saves a step, and gives you a smaller pill (Mercaptopurine dosages are roughly 1/2 of what azathioprine dosages are). Due to this similarity, I am not sure your reaction to one would be wholly different than the other. Try and see at a low dosage.
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