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Hi all

So it seems the Humira hasn’t worked. Have been on steroids for several months which caused Cushing’s, diabetes & heart issues. They started me on humira in July & started weaning the steroids in Aug. Am under an endocrinologist to help with the steroid reduction but once I got down to 15 I started flaring, kept reducing (as was very ill with the Cushing’s & other complications) & got down to 10, has labs & all my inflammation markers were up & was starting to feel terrible, down to 5mg & really sick & bloods rising so saw my gastro who has concluded Humira not working & is starting me on infliximab. Has anyone been on this drug before? I don’t know too much about this one like I did the Humira so any input welcome... Thx 

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  • Posted


    Sorry to hear that you are having a rough time..

    I have Infliximab infusions about 5 times. 

    The first 4 was 2 hours in a drip and then 2 hours waiting around in case of any reaction. The 5th was a bit of a disaster as I experienced anaphlyatic shock from it.

    there were 2 other people who had the same reaction the same day and the member of staff usually prepared the infusions was on holiday. This may, of course, be just a coincidence but it was decided that I should go onto Humira instead. 

    Neither made an improvement to my symptoms. That said there were loads of patients there who saw huge improvements so it's definitely worth trying.

    Hope you start to feel better soon!


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  • Posted

    Hi Hollaka79, I having my 3rd infliximab infusion next week, I have not seen much improvement as of yet but I have been told that the treatment takes along time to work.

    I last had the treatment in 2004 and it worked really well.

    Thanks Twiglet.12,

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  • Posted

    Thank you all for your replies. Really hoping it works with no adverse side effects. I’ve had a call from IBD team & they’re giving me a two week biological break (from Humira) then I have to go to chemo suite in two weeks time to start treatment. Honestly I’m so over all this right now, it’s just a continuous rollercoaster 😞

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