Azathiaprine worries!

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Hi, i was diagnosed with Crohns just over a year ago. My bowel was in a pretty bad way. After a routine colonoscopy, i was admitted for a bowel salvage. Was prescribed steroids and infliximab infusions. All of this has been fine and has managed to get me into remission. However, i am also on azathioprine which seems to have awful side effects for me. On the recent advice from my ibd nurse i stopped this medication for a couple of weeks and felt great! However, when i try to reintroduce it i feel terrible within a couple of days. Sore throats, feeling hot, phlemg. Just generally feeling horrible and have now for the last four months. I want to stop this drug urgently. I am scared of the risks and its making me really paranoid! Had anyone experienced a similar thing? Thanks. 

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  • Posted

    Hi Sara

    I tried Azathiaprine about 10 years ago and after about a month I experienced a really dizzy spell, I ended up at PRI A&E dept. I came off them straightaway and I try to stick to lower doses of steroids - I know where I am with them!

    I know what you mean about side effects, I can't even bring myself to try Infliximab because some of the side effects could last up to 3 months. Let's face it, any chemical man-made drug is going to have side effects and they may or may not affect people as everybody is different. I wonder if it may have something to do with how badly our immune systems have been compromised through our illness.

    I would suggest you go back to your doctor and let him/her know about the side effects, bearing in mind though some side effects may stop after a week or two once your body has adjusted - at least that's what my doctor told me.

    Good luck and let us know how you get on.

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    • Posted

      Thank you Patricia. The medication is concerning. I would love to stop it all but am fearful of the repercussions. I am going to stop the azathioprine and ring my nurses tomorrow. Maybe they can offer me an alternative. Thanks for replying. 
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  • Posted

    I was on Azathioprine for 2 and half years.  I suffered side effects for about 6 weeks but this subsided and kept my Ulcerative Colitus in check along with Pentasa. After the 2 and half years my Consultant took me off the Azathioprine  but it is a medication that you have to be weened off gradually not just stopped.  Every person that suffers from these illnesses are different.  Both my parents and younger brother suffer the same illness and we all had different medications and quantities.  It is an illness that is very difficult to deal with and takes time to sort out.  You must talk to your IBD nurse and consultant.  They are the only people that can guide you but you must insist on knowing answers and insist they listen to you.  It also helps if you have someone that can be with you when you see them and can confirm how you are suffering.  My husband has been a rock and supported me through all my appointments and examinations.  Not nice I know but because he was by my side he could explain what I was going through when I was too poorly to explain and had no fight in me to query what they were saying to me.  I wish you all the best as you try to get answers and I hope that you will soon begin to feel better.  There is light there for most of the time once you get it all under control.  You will suffer flare ups but you will get to know your body and what you need to do.  Also worth doing is watching what you eat and keep away from stress as much as you can. My Consultant tells me that stress is not part of the flare ups but it is funny that when I am stressed out over something my symptons seem to flare.!!  Good luck in the future.  
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  • Posted

    Hi Sara

    I had the same problems with Azathiaprine.  i went back to my consultant who changed me to Mercaptopurine or 6Mp, this is what Azathiaprine becomes when the body metabolizes it so should have fewer side effects..

    Since i have been on 6MP I haven't had any side effects.  It might be worth checking, although as lots of sufferers know every one is different and have different reactions to the drugs.

    Good luck

    Steve

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  • Posted

    U got an email or anything I have had a lot of problems I got diagnosed a year ago and nothing worked so far not even injections and in and out of hospital 3x a month if not more some weeks it’s horrible to feel when u get the pains ect but is capable some ways but its hard finding them 
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