Infliximab - Success?

Posted , 5 users are following.

Hi, had lefft sided UC for 4 years, been on mesalsine from the start, and am now steroid dependant, flairing badly with severe colitis on my last endoscopy last week. Doctors prepping me for Infliximab infusions. Whos had good results fromthis drug? and how long did it take to kick in?

thanks for your help!

0 likes, 4 replies

4 Replies

  • Posted

    Hi DanLabGray, have a very similar story to yours! I'm due to get my 4th infusion next week and let's say I was loosing hope when nothing happened after the first three. My consultant then put me on methotrexate along with folic acid - apparently this is a medication that works along side the infliximab but you need regular blood test. Well last week was the first time I stopped bleeding in 5 months, unfortunately my bloods came back with increased white blood cells so the IBD nurse told me to hold off on the tablets until she speaks with consultant and low and behold I've started bleeding again. I called her the other day and she explained and said that the consultant was happy for me to go back on them and she will monitor my bloods.

    When I first went on it I was a little disappointed as some people see a difference after their very first infusion but I guess everyone is different.

    If the bleeding stops then I'm more than happy to continue with this as the next stage for me will be surgery!

    I hope thats of some help. Let me know if you want to know anything else.

    😊

  • Posted

    thanks all, yes im still experimenting with diet, although im running out of food groups to cut out! Looking forward to seeing the results, ive heard lots of good and bad stories from various websites but we'll see what happens. 

    just got to get this under control and get on with life!!

  • Posted

    Hi - sorry to hear about your situation. I had Infliximab 12 months ago in a last ditch effort to deal with the UC I'd been battling for 4 years. It had no effect for me but apparently works for 7 out of 10. A week later I had surgery and am living a full life and am drug free. I'm not advocating surgery but it is not the end of the world and has some positives. When my UC flared up I thought I was dying and the drug made me feel worse. Good luck

  • Posted

    Hi danlabgray. there are several meds in this type of treatment for uc. check out the info on the crohns & colitis uk website about meds. there is another one many patients find more tolerable (if you don't get on with infliximab of course) called 6mercaptopurine. my hubbys accountant is on this & it controls her colitis very well for over 4yrs i might add, so keep this in mind for future reference should you need it, plus gen yourself up on all the meds available to try (on the crohns & colitis website ) before you ever have to consider surgery. hopefully you will be able to get on with one of these meds, thus avoiding surgery in the future. all the best to you. 

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.