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Has anyone been put on infliximab?

Posted , 6 users are following.

laura27471
laura27471

hi guys

I am currently just home from a 6 night stint in hospital. Having a very bad UC flare at the minute. Had a load of tests and bloods and poked and proded for days.

The consultant is starting me on Infliximab after I finish an 8 week course of prednisone.

Do you have any advice? Has it helped any of you?

I am currently exhausted but feeling positive that this may help.

0 likes, 9 replies

9 Replies

  • jamie44738
    jamie44738 laura27471

    Posted

    Hi Laura.

    I'm due to have my 5th Infliximab infusion tomorrow. I've been diagnosed with Crohns.

    I'd say the first infusion gave me a really good boost and each one has given me a good boost since, just not as good as the first, but I was in a bad way back then.

    About 6-7 weeks after an infliximab dose I'll start to feel like I need the next one ( they're done once every 8 weeks).

    I'm also on Azathioprine, which is keeping me under control at the moment.

    At the start of Infliximab they do it on day 1, day 8, day 22, day 36 and then once every 8 weeks.

    I wish you luck, I'll be sat for 2 hours on the drip tomorrow.

    Jamie

    • laura27471
      laura27471 jamie44738

      Posted

      Thank you Jamie. Best of luck for tomorrow.

      I am currently on Azathioprine been on it 2 years now. They did tell me I would have to continue taking that also, but could possibly come off it down the line. Did they tell you the same?

      Do you feel sick afterwards? Could you go back to work after it?

      Thanks for your help 😁

    • jamie44738
      jamie44738 laura27471

      Posted

      Thanks Laura.

      I always take the day off work. I feel tired after it, I dont think it's a side effect more I've been lying still for a couple of hours. Other than feeling a bit tired, I feel fine.

      I probably could go back to work, but just choose not to.

      I've not been told I can come off it, but its constantly under review. My doctor was awesome, unfortunately he's just moved back to Ireland, which is a bit of a trek from Bedfordshire.

      Hope this helps.

      Jamie

  • Zemus90
    Zemus90 laura27471

    Posted

    no but i have been told i would be the only treatment i could have if my current medication was to fail i have done lots of research on it and it dose have risk as do all but the success rate is very good for the type of drug I've heard it can make you feel ill and even prone to flu and colds more often as it is a immune system suppressant but with a good diet can be very good as a cause of treatment i would recommend speaking to you doctor and IBD team ask and questions you can think of let them know your worries do research but remember everyone responds different to the illness and treatment what works for you might not work for others hope this helps

    • laura27471
      laura27471 Zemus90

      Posted

      I have done loads of research from I've been in and spoke to the IBD nurses who administer it.

      Just want to hear from someone who actually has had it or receives it to see how they feel and stuff. Thanks so much for your reply.

      I hope your current medications works and you get some relief.

  • ro77360
    ro77360 laura27471

    Posted

    It seems like protocols have changed quite a bit over the years.

    I showed up at the University of Chicago hospital 15 years ago literally dripping blood on the floor.

    UC diagnosis.

    One week later I was back home on the mend.

    Why? Top doctor - very top.

    Cyclosporin, direct Pic line of same, Asacol (now Delzicol) - in remission ever since.

    • laura27471
      laura27471 ro77360

      Posted

      That is amazing. I am glad you have had such a long remission, long may it continue.

  • Darasdad1
    Darasdad1 laura27471

    Posted

    Hi laura27471 - I was given an infusion of Infliximab as a last resort but it didn't work. Subsequently I had my colon removed which has been a life saver and revelation. My life's back to normal without relying on drugs. Hope it works for you, good luck.

    • laura27471
      laura27471 Darasdad1

      Posted

      Thank you. I am so glad your life is back to normal. I hope some day not to be relying on drugs for everything too.

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