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Newly diagnosed - azathioprine help

Posted , 8 users are following.

carrie303
carrie303

I was diagnosed with UC in December following severe food poisoning from chicken in summer last year.

I've had several different cameras - most recently colonoscopy the weekend before easter. Come easter weekend I was away for the weekend and had a flare up. Having no idea what to do (any suggestions if this happens would be grateful).

I went to hospital and my nurse said she wants to change my medication from pentasa to azathioprine. I've read leaflets and it looks like last resort before surgery and quite an aggressive drug. Reading about it suggest side effects have made people very ill.

Does anyone have experience of azathioprine?

As all this is new to me any advise would be grateful.

Thanks Carrie

0 likes, 23 replies

23 Replies

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  • james_sull
    james_sull carrie303

    Posted

    That doesn't seem right.

    Normally you would be prescribed a course of steriods (pred or clipper) to reduce the inflammation and bring you out of the flare at which point you would continue with pentasa.

    If you continuously flare then I should imagine that Aza would be the next drug to consider to control the disease.

    As far as Im aware there are other treatments availble should Aza not work for so I wouldnt fret about surgery for a good while.

    • carrie303
      carrie303 james_sull

      Posted

      Sorry James. I did get steroids and enemas and suppositries to try and get me out of the flare up which so far seem to be doing ok. I've not take the steroids yet. I am trying the other things first.

      The nurse said when I go back for mu appointment next week she wants to start me on the aza. I'm just conscious given what I've read about it.

    • james_sull
      james_sull carrie303

      Posted

      If you are still flaring then from my own experience you really should take the steriods.

      There is a steroid foam but enemas are especially Salofalk is just the same drug as Pentasa but in another form.

      You don't want to be getting prescibed an immune suppressant drug if its not required.

      Ps steriods are nothing to worry about, I quite enjoy being on them for the short period, you get a massive chunk of your life back whilst on them.

    • carrie303
      carrie303 james_sull

      Posted

      Hi James, the ibd nurse advised me to try the other things before steroids as they might be enough and they seem to be working. I generally don't suffer too bad to be honest which is why I'm reluctant to take aza because I dont feel unwell generally or suffer in daily life. Just the occasional flair up.  Seems rash if I'm not too ill like other people seem to be? 
    • barbara80658
      barbara80658 james_sull

      Posted

      Hi James,yes steroids are good but you can only be on them about a month,then come off them as with me then I had to go on aza.And that has happened to some people hope you are doing ok James .
    • james_sull
      james_sull barbara80658

      Posted

      Fine thanks Barbara

      My last course of Steriods was 8 weeks - thats 8 weeks of wine, beer and nice food !

    • james_sull
      james_sull carrie303

      Posted

      Seems rash to me also but it is supposed to be a good drug to take for the condition.
    • barbara80658
      barbara80658 james_sull

      Posted

      Yes don't you feel good on steroids then you will probably go on aza.then you may get a pain in chest area as steroids can cause that.that happened to me then I got put on omerprozile.its one thing after another haha!!
    • carrie303
      carrie303 james_sull

      Posted

      But James do you not find you out on about a stone of more?
    • james_sull
      james_sull carrie303

      Posted

      Not really, you get your appetite back but its upto the individual to control it.

      If im okay then I tend to hit the gym more so I find that I lose weight whilst on them.

  • barbara80658
    barbara80658 carrie303

    Posted

    Hi Carrie. I went on azathioprine 6 weeks ago, I was scared like you.Ive not been too bad but its better than going to the loo 12 times a night etc.and giving myself enamas . that was awful every night.we are all different and you will have to try it to know if you suit it or not.you can always come off it .don't worry let us know how you go on  good luck xx
    • carrie303
      carrie303 barbara80658

      Posted

      Thanks Barbara. You see I don't have this problem generally and symptoms haven't been too bad which is why I feel putting me on aza might be abit rash?
  • claire-mar29574
    claire-mar29574 carrie303

    Posted

    Hi Carrie.ive been on aza for 16 years. I find no side effects that I know of. I'm on 100mg a day.

    And asacol..

    There are side effects to everything and they are different for everyone.

    Hopefully you will find something that works for you...

    Take care

    Claire

    • carrie303
      carrie303 claire-mar29574

      Posted

      Thanks Claire. Do you not her Claire ups on aza? Am I right that you don't have steroids on aza?

      What's asacol?

      Hopefully I will find something soon. I thought pentasa was ok to be honest the I had a colonoscopy a couple of week ago (when I has no flare up to see how bad my UC was) and then I got a flare up. I feel like the colonoscopy did it. Ggrrrrrrr.....

    • claire-mar29574
      claire-mar29574 carrie303

      Posted

      Hi Carrie.ive had numberous courses of steroids on aza.loads in the last year..no issues.steroids work wonders..but u cant take them forever..too many side effects...

      Asacol is also called mezalazine- I think.been on that 16 years too..

      Tried enemas too.ok but a fag..

      X

    • carrie303
      carrie303 claire-mar29574

      Posted

      Oh I keep getting told different things from my nurse. She said if I went into aza I would never have steroids again suggesting it was a replacement and you couldn't have them.

      I'm loathed to have steroids because I've lost about 5 stone - before I for uc. Then when I got it and had to have steroids I immediately put a stone in. Just managed to lose the stone and not I am ill again.

      I honestly don't know what to believe with the hospitals.

    • claire-mar29574
      claire-mar29574 carrie303

      Posted

      Its shocking.because they should all e the same and have the same knowledge.

      😖

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