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Azathiopine? Anybody take?

Posted , 4 users are following.

kerry_63543
kerry_63543

Hi, I've had ulcerative colitis for four years, was controlled with mesalazine 1200mg 6 times a day, but since the birth of my second daughter who is now 11 months, I've been flaring up, on an off short courses of steroids oral an rectal, now it's to the point where I loose control and have many public accidents! Bleeding all the time. I've just been re scoped yesterday and has now spread to promial distal colon, had biopseys which I assume is routine, and they may have to start me on azathiopine. Anybody else takes this and what is side effects?? Currently on a eight week reducing steroid dose until I see consultant 

0 likes, 10 replies

10 Replies

  • looloo43
    looloo43 kerry_63543

    Posted

    Hi Kerry, I am in same boat as you but no kids. currently on another course of prednisolone to calm down a flare & likely to have to start immunosuppression when i see specialist again in few wks. I have looked into these drugs myself - the common ones uses are azathropine & mercaptopurine. mercaptopurine is supposed to be more tolerable of the 2, although some people cant tolerate either. if you look up the 2 drugs info on this site or http://www.medicines.org.uk/emc/ the side effects are a hideous list, but all medicines leaflets display every side effect possilbe. I do know someone who has been on mercaptopurine for about 2yrs for uc, & she has never felt better. she had to have flu & pneumonia jabs as one of the most common side effects is being more susceptible to infections, & also she tries to keep away from anyone with colds, flu, shingles, chicken pox . Hope this helps xx
    • kerry_63543
      kerry_63543 looloo43

      Posted

      Hi there... Thanks for the advise! Will hav a look at website. so sorry ur dealing wit h this also...gets to u hey..when drs cant really make up their minds. I've had to refer myself to my local IBD nurse...who has been so supportive and has left me alittle more reassured! Hate taking steroids after steroids, my body don't know wether it's coming or going! My mood swings are awful! 
  • Zigsta68
    Zigsta68 kerry_63543

    Posted

    Hello,

    I started taking Azathiopine a month ago but unfortunately it made me sick after 6 days of only taking 25mg per day. I had flu like symptoms, joint and muscle aches and a fever. I stopped taking it for 12 days and then restarted but the same thing happened so I must be one those who can not tolerate it. I have read online that those that can tolerate it have great success and it stops their flare ups and gets them into remission. I hope it works for you, just make sure have regular blood checks.

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  • looloo43
    looloo43 kerry_63543

    Posted

    Hi again Kerry,

    My ibd nurse is fab too. wish she had more authority with long term treatment than consultant as i can access her quickly, & she is much more down to earth & understanding of how urgently you need help when flaring because of how it affects basic everyday life. I dont get the mood swings badly at all with the steroids I think the antidepressants i am on help this. i am on antidepressants as i was finding it hard to cope with one med working for few months then flaring again, another med working few months the flaring again, repeat, repeat. i seem to need a higher dose of steroids each time i flare now to calm things too, but they usually do work after about 4wks to get you by. You start thinking is this ever going to be under control & it does get you down & make you worry about work etc. must be harder for you with children to look after as well as yourself. the only problem i get with the steroids is moon face! but this does go gradually when you stop them. I think immunsuppression is probably the long term way forward - I am going to ask for mercaptopurine from the start if thats what my specialist decides in november as it's supposed to be more tolerable than azathroprine. let me know how you progress. x

    • kerry_63543
      kerry_63543 looloo43

      Posted

      Hi, 

      I really wish I'd found her earlier to be honest..Yes it really does get you down, as I want to just get on, and try not to let it beat me, but running to the loo constantly seems to be my life at mo....my 11 month old has to either come with me or let her scream outside the door. My second child is 4 an I've had many of accidents with her and she starts to ask questions, as she see the mess. Just hav to say I have a poorly belly. Just I don't seem to see an end, I'm sure there will be. I'm on steroids reducing weekly for eight weeks, I'm really not keen on this, but I'm so fed up, been on since Friday and no change as yet. Did you gain loads of weight? Let me know how you get on...as it's finally so nice to talk to others. (As I'm new to all this) xx

  • looloo43
    looloo43 kerry_63543

    Posted

    Hi Kerry, with this current flare i lost about 4.5pounds in 10 days which hasnt happened before, but about a week to 10 days after starting steroids, i put 5pounds on - my appetite got better, i haven't put on any more so i am about even. i cant remember putting weight on before with previous steroid courses, but i always get a puffy face & neck with them, which goes when i stop them. i'll keep you posted & you the same. i agree it is good to share common problems & info with other uc sufferers, because its not a "visible" illness, sometimes it's hard for others to understand. x
  • barbara80658
    barbara80658 kerry_63543

    Posted

    Let me know how you go on Kerryas I am going on azathropine in 2 weeks . Sounds horendous when you look at the after effects dos'nt it??

  • barbara80658
    barbara80658 kerry_63543

    Posted

    I am going on this next Monday let's keep in touch.i am a bit scared as I have heard of a lot of bad side effects Kerry x
    • kerry_63543
      kerry_63543 barbara80658

      Posted

      Hi Barbara... How are things going? I haven't been on here much as I've had a horrific few months! Been really poorly just before crimbo, back on steroids, weaned off, by end jan Its been the worst flare ive ever had, to the point of no control daily! Pain, blood clots going over 10 times a day and scared to eat! Thing is the team I'm under seem to sit on me unless I really push, finally last week they started me on steroids again, they haven't seen me, only looked at my bloods, Hb 8.5 and CRP 40 !!!!! They still were reluctant to start steroids!! I'm really low at mo and with two kids and work, it's started to beat me! 4 years I've had uc and they still haven't started me on long term tablets, the last chat was azathiopine, but my digestive enzymes were not normal or good range can not start, now this flare I can't really just want it all to stop,, so to rant!!!!! I hope you are well? Like to hear how your process is going? Xx
    • barbara80658
      barbara80658 kerry_63543

      Posted

      Hi Kerry .so sorry to hear you have been so bill.i have been very poorly too.diareah wouldn't stop.i was sitting up in the house all night as it was easier to get to the bathroom from the lounge and sitting up than from the bedroom and lying down.isn'tthat awful.i got quite depressed.so went to doctors and he put me on steroids

      They worked straight away.now on Monday I am seeing consultant who is going to put me on azeothrine.i am scared tho as I've what I've read.good luck Kerry keep in touch xx

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