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Anyone else on Azathioprine?

Posted , 9 users are following.

kelaimee
kelaimee

I've had crohns for the last 12 yearsand on mesalazine for the last 10years. I've now been told my crohns has got worse and the next step is Azathioprine. Doc went through all the things that can happen taking these tablets and I'm not wondering if this is really the next step. Although it may ease my symptoms, which at the moment don't really interfere too much with daily life, the risks of this medication seem quite high. Really confused. Is there anyone one on this medication that can help?

0 likes, 21 replies

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  • Stickinsect
    Stickinsect kelaimee

    Posted

    I've been on azathioprine for 20 years and best thing I ever did. My consultant recommended stopping it in 2010 as had been on it for 15yrs and in constant remission for 5 yrs. Worst thing I ever did. Had my worst ever flare and they put me on Humira and azathioprine. They added Humira as well because azathioprine takes up to 4 mths to get working in your system as it is a very old style immunosuppressant. Only took 3 doses on the Humira and it led to me developing SLE Lupus which is permanent. Thankfully the treatment for the Lupus is same as Crohn's and so have stuck with just the azathioprine. Which I will carry on taking for rest of my life.
    • kelaimee
      kelaimee Stickinsect

      Posted

      Thanks for that stickinsect. Not sure what's going to happen at moment. Had flare up couple of weeks ago and started getting pains in chest, being sick and head and legs going wobbly. Ended up in a&e. Symptoms are similar to pain I had with gallstones but had gallbladder removed several years ago. Had scan but apparently it's all clear. Seeing gastro consultant tomorrow so will see what he says. Not sure they can start new medication until they know what's causing the pain and sickness. Thanks for your reply though as it helps knowing that the medication has helped and for a long period of time too. I had heard that doctors didn't recommend taking it for more than 5 years.
    • maureen15717
      maureen15717 Stickinsect

      Posted

      Hi, I am interested in you saying you have been on Azathioprine for 20 years.  I have been on it for nearly 5 years and my consultant wants me to come off when I see him in January although I have got to make up my own mind.!!!  Reading your comment I am now worried if I should come off as I have not had any flare ups in the 5 years I have been on them.!!!  I have asked my Consultant what he would suggest and all he says is its 'Up to Me'.  Very helpful !!!
    • Stickinsect
      Stickinsect maureen15717

      Posted

      Yes, I know what you mean. Trouble is, no one can say whether you will stay in remission or not after you stop it. Only you can weigh up your options and the risks. In my case I have such little bowel left (1.5m) after 8 surgeries that I can't afford to have any more flare ups, as the tiny amount of bowel I have left is in really bad shape already.

      Unfortunately, this is the nature of Crohn's. Most of the time the decision is up to you. Do your research and find out facts for yourself. You can always say you want to have more time to make up your mind. No decision you make in January is set in stone. You can always change your mind.

      The only thing I would say is be careful not to go without any sort of medication as even if scopes,scans etc are clear - Crohn's tends to hide in a microscopic level and can bubble away unnoticed for ages before anything shows up of tests.

    • maureen15717
      maureen15717 Stickinsect

      Posted

      Hi again,  Many thanks for your reply and your advice.  My husband is going with me in January because he thinks of questions that I don't. I shall still be on Pentasa for the rest of my life, but we shall have to see where I go in January. 
  • nic87
    nic87 kelaimee

    Posted

    Hey, I've been diagnosed with crohns for 2 and a half years and have been taking azathioprine for about a year now, I'm on 150mg a day along with 3g of pentasa a day and get no side effects. My doctors surgery gives me a blood test once a month to check my blood levels but thankfully that's now moved to 2 monthly as I've had no problems. The list of side effects can be daunting but they monitor you well, you just have to make the decision that's best for you.

    Hope this helps.

    Nicole smile

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