Is anyone on infliximab and can you please tell me how you've been and how it feels. Have you had any side effects?
Thank you in advance
Hi Sara,
I've been on inflixamab In the past but unfortunately after the forth infusion I had produced anti-bodies and it wasn't working.
When I was on it I just felt tired a few days after but no major side effects and maybe a bit nauseous . I also had a course of Budesonide (steriods) but this didn't work either.
The consultant also put me on Methotrexate about 2 months later as I hadn't been on it and he said it would boost the effect of the inflixamab, however this was the worst medication I have been on the side effects were just horrendous - tired all the time, nauseous, no appetite and diarrhoea for 2 days, funny enough it was stools and not Just blood. So maybe there was something in it that was working but after 2 weeks i was told to stop as my white bloods were raised and then put back on at a lower dose.
My consultant did give me one more option after this VEDOLIZUMAB but after 9 months I had just had enough of bleeding, not eating, not being able to go out, being on several different medications..... .....and so opted for an ileostomy and it's the best thing I've done. I asked a lot of questions and spoke to a lot of people.
Give it a go and see what happens, I know it's worked for some and you always have the option to go with the other infusion I mentioned and it also may be worth asking about other things you can take with it that will help boost the inflixamab.
Hope things work out.
Sx
Thank you so much for your reply.
im sorry that it didn't work for you, but I'm glad you have your life back now with the ileostomy.
I'm hoping it will work and the side effects aren't too bad.
Not had much look really lol
Hi Sara - yes, I had Infliximab but it just didn't work. I was told it works for 7/10 but, unfortunately, not for me. Good luck with your treatment.