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Need advice on what to do next!!!

Posted , 10 users are following.

Miss_uc2015
Miss_uc2015

Hi

I was diagnosed with UC in April this year. I started on prednisone and Mesalazine immediately. The prednisone worked really quickly however as soon as they started to cut the dose my symptoms came straight back. I have been up and down on different doses of prednisone but was told I'm steroid dependant. My specialist has then tried me on two immunosuppressants with the hope of taken me of prednisone. I have tried both azathioprine and Mercaptopurine and unfortunately had allergic reactions to both medications 4-6 weeks after starting treatment so was removed of azathioprine first and then tried Mercaptopurine which I was recently removed of also. As soon as I was taken off the Mercaptopurine my symptoms have come back and I'm bleeding so much. So my question is what's next?? I don't want to go back on prednisone due to the side effects and I was just on it for 7 months straight. Has anyone had a similar experience? What did you specialist suggest next?

Also really interested to know if anyone has had success changing their diet or introducing a exercise routine that has helped manage their disease?

Thank you 😥

0 likes, 19 replies

19 Replies

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  • looloo43
    looloo43 Miss_uc2015

    Posted

    Hi , sorry to hear you are having trouble with your colitis. if you cannot take immunosuppressants, the chrohns & colitis website talks about biologics. i think biologics are the next step meds after immunosuppressants aren't suitable/have failed. I still find my balsalazide works (the 4th aminosalicycilate I was put on), so have not had to progress as far as you med wise to control, but i did read all about it, & i believe biologics are the next in line, so you could ask your gastro doc about this if not already considered/tried. hope this helps, take care & get plenty of rest(always needed during a flare). xx
    • Miss_uc2015
      Miss_uc2015 looloo43

      Posted

      Hi

      Thank you for your response. I have read about these but for someone reason my doctor hasn't spoken about it as been a option.

      I will pushing to try everything before I agree to any surgery path.

      Thanks.

  • em10218
    em10218 Miss_uc2015

    Posted

    Hello misst89

    I was also diagnosed in April this year, I spent a week in hospital after a nasty flare, I was started on prednisalone and asacol straight away. Unfortunately when I started to reduce the steroids my symptoms worsened. I'm still on the steroids now it's my 4th attempt at reducing them. My consultant has put me on azothioprine, I've been on this for about 3 months now I just hope it works. I too am interested to no what role diet and exercise plays for UC. Best of luck, Emma x

    • Miss_uc2015
      Miss_uc2015 em10218

      Posted

      Hi Emma

      You sound like you started the same road as me but I'm glad to hear azothioprine is working so far. Hopefully you don't get any side effects and can now reduce your prednisone.

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