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Infliximab experiences

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aimee47201
aimee47201

I was diagnosed with Crohn's disease in 2009 when I was 11 years old. It took a while to get the disease under control after undergoing liquid only diets forn6 weeks at a time on three seperate occasions. After the third time my doctor decided to try me on infliximab this was my miracle drug and I was symptom free within week. I was also taking azathioprine a long with my infusions. After two years I was taken off infliximab and I continued to be symptom free. Around a year ago now I was hospitalised for two weeks with glandular fever my azathioprine was stopped as they thought this was making it worse. I was medication free for around 10 months until my Crohn's symptoms started to come back. I underwent a colonoscopy and it wa confirmed it was back, I re started infliximab. After my first infusion I felt a difference. On my second infusion I had a reaction to the drug but they were able to carry on after having paracetamol and piriton. I am due my third infusion in a week and I am suffering with really bad symptoms, I even have mouth ulcers which I have not suffered with since I was first diagnosed. Any advice, experiences or information would be appreciated as I am really worried that the infliximab may just not be working for me this time. Thanks in advance.

0 likes, 3 replies

3 Replies

  • IndieHannah
    IndieHannah aimee47201

    Posted

    Fantastic you had such a positive response to infliximab for as long as you did. And such a shame the disease has reoccurred!!

    Don't know if the Doctors have mentioned Humira??? It would perhaps be the next logical step if the infliximab is no longer tolerated.

    I really hope you get things under control again soon.

    Hannah

    • aimee47201
      aimee47201 IndieHannah

      Posted

      Hi hannah,

      Thanks for your reply, to be honest other treatment options have never really been discussed with me apart from steroids which I have tried to avoid as I've heard they can be quite nasty. I am due to see my specialist next month so I will definitely be asking about this and other treatment options.

  • stephaney28634
    stephaney28634 aimee47201

    Posted

    Hi, I have been on Infliximab treatment since August last year by my 3rd infusion I startled too feel a diffferance . I had chest infection and cold since then and had my fourth infusion last month. A side effect I have had is high blood pressure been put tablets for it.  
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