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I've been on azathioprine for just over two months, I've tapered off prednisolone and now I'm flarin

Posted , 6 users are following.

tim50636
tim50636

I started azathioprine just over two months ago and have just finished taking prednisolone. I have also been taking 2400mg of asacol. But now I have started to flare. I thought it was because I hadnt been on azathioprine long enough. I contacted my specialist and she suggested doubling my asacol to 4800mg. But things seem to have got dramatically worse. Could the asacol be making it worse and should I go back onto steroids?

0 likes, 9 replies

9 Replies

  • sillip2007
    sillip2007 tim50636

    Posted

    Sorry to hear that you are suffering.  I was placed on Azathioprine back in Dec 2013 and it took awhile for my symptoms to be alleviated and that us only because I went from 100mg to 150mg as 100mg was not working.  I have never had Asacol so unable to comment on that.  Steroids help and make you feel like you are getting back to normal again but from my understanding and own experience (other members may feel differently), but for me although steroids work initially, they reduce the inflammation but do not clear it.  Again, I must state this is based on my own experience and it may be different for you.  I am sure your IBD nurse may be able to add another drug or suppository that may help rather than going back on steroids which carry side effects.

    I know I probably have not helped or answered your question!  Good Luck x

     

    • tim50636
      tim50636 sillip2007

      Posted

      Thanks for your thoughts, it's to know I'm not alone! Are you well now? Maybe I could ask about upping the azathioprine to my specialist I am on 125mg at the moment. Do you know if there are any cons of increasing the dose of azathioprine?
    • sillip2007
      sillip2007 tim50636

      Posted

      Hi Tim

      Regarding whether there are any cons of increasing the dose azathioprine, for me, unfortunately there isn't.  I have become drug dependanrt, which means when ever I come off steroids, my syptoms return ten fold.  I was recently taking infliximab, which is given intravenously but I have now built up an intolerance to that, that my consultant has stopped my treatment on that this week.  Today I am starting on adalimumab which are injections but have been told this is the last drug they can give me before surgery becomes an option.  My consultant is adverse to surgery so for him to offer to put in contact with coloproctolgy confirms that my bowel no longer wants to play ball.

      Not everyone ends up like this and as claire-mar29574 says Aza takes a few months to really start working and blood tests can confirm if it is working for you.

      I hope that things settle down for you especially as you are at Uni can I can imagine that this may be difficult for you having to pop to loo every so often.  Good Luck x

       

  • claire-mar29574
    claire-mar29574 tim50636

    Posted

    Hi Tim,

    Im on both asacol and aza.

    I've been on loads of courses of steroids.need to ring hp in morning to get more.

    I soon as a course of them finishes it starts again-in fact today has been the worst day for me in a long time.blood and about 20 trips to the loo- my butt feels like there Is a hot poker up there! Sorry to be crude..but it stings so much...

    I don't have any probs with asacol and if I take more they don't cause probs either.

    My gaestro said that aza takes at least 3 months to get in ur system so it might not have the true effects yet..

    Everyone is different, hopefully they can sort it for you.its mostly trial and error.. They can do a test to check your aza markers to see how effective it is...

    Let us know how you get on..

    😃

    • tim50636
      tim50636 claire-mar29574

      Posted

      Hi, it sounds like you're worse off than me at the moment which I'm sorry to hear. Today was my worst day and I went about 8 times. I'm hoping it it just the fact the the azathioprine hasn't fully kicked in yet, I could just do with something to control it in the meantime, especially as I'm at uni and it can be quite awkward both at home and during lectures! That's interesting about the test for azathioprine, I'll ask about that. Thanks for your help and concern, I'll keep you posted. I hope you start improving in the meantime
    • sillip2007
      sillip2007 claire-mar29574

      Posted

      Hi Claire

      You mention that hot poker feeling.  I had that really bad last month to the point that I found it hard to sit down!  My IBD nurse mentioned to me that it is an indicator of an inflammation so arranged for a flexi. The flexi confirmed my colon was completely inflammed and so did my FBC blood test.   Horrible feeling isn't it!!

      Take care and hope your symptoms die down for you xx

  • chris91672
    chris91672 tim50636

    Posted

    Hi Tim,

    Yes talk to the nurse about upping your Asa, I was on 200mg / day for ten years. The steroids really help in the short term, one problem may be too lower starting dose, or reducing the dosage too quickly? Doctors like to get you off the Pred ASAP, but I found if I reduced by more than 5mg every 14 days (I started on 40mg / day) then the flare up just came back.

    • tim50636
      tim50636 chris91672

      Posted

      Hi Chris, okay I'll definitely ask about that, thanks. And yes, as much as pred stops my symptoms quickly I'm not sure I want to keep going back on them, as the last few times I came off them I flared again straight away
  • ruari1
    ruari1 tim50636

    Posted

    Steroids certainly give you that overall well-being feeling and often when you come off them, a flare up occurs - but not always! It's not good to be on steroids all the time either! Occasionally is fine! Doubling up on the Asacol concerns me as I have alternated between it and Mezzavent due to side effects from those drugs. I now find after being on the asacol for 6 months that my side effects are worse. I am seeing a consultant from another department on the 29th to discuss my medication and see if there is another alternative that might combat the side effects I suffer. (One horrific one is Peripheral Neuropathy!!!! Horrible). We'll see what happens after the 29th! Meanwhile, I came off steroids this time on the 11th April and so far have had no flare up. However, other things such as backache etc have returned, the steriods seem to keep other things at bay! It's a vicious circle indeed. I shall certainly let you know what this other consultant has to say next week about my meds. Meanwhile, my only advice to you is to watch your diet very, very carefully, I eat at the same time every day and keep taking the meds - same time every day! That certainly helps me to cope! Meanwhile, Good luck!
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