Anyone take influximab for Crohn’s?

[BellaTrixLeStrange1]

Hello! I could do with some views and advice! My consultant has recommended that I start having infliximab infusions in a couple of weeks after a flare up that has lasted since January. No other medication has worked and I can’t take azathioprine due to awful side effects. I’m going to have the infusions as I have to try something. But I’m nervous about it. Has anyone else had this treatment? How was it for you?

DS has been on infliximab since End of 2021. He is in remission and has no symptoms. He was on infusions for a couple of years but now on injections at home. Both forms have been great for him.

Yep, I’ve been on infusions every 8 weeks for about four years. It gave me my quality of life back and I’ve had no side effects.

Hi Bella,
I was started on 100mg Azatriprine daily and 120mg influximab by pen two weekly. Couldn’t tolerate the azatrioprine due to severe side effects, and the infliximab, after 10 months has not relieved my symptoms and gradually me me more unwell. I’m patently waiting for a change of meds.

I have learnt that if the meds arnt working, to speak up straight away. I’ve been telling my IBD team since April how bad I am and was ignored. Finally got an appointment after I refused blood tests and would no longer discuss with nurses and demanded consultant meeting. I’m back on the waiting list for new infusions of a different med.

I do hope the infliximab works for you.
best of luck x

My son is in it for UC. been on it for about 3 years I think. In remission for at least 2 now and think they might stop it soon. He's on azathioprine too. His white cells are slightly lower w but respond when he's unwell but I think that's more likely to be the aza than the inflixamab. He self injects every 2 weeks after having a couple of infusions at the beginning. He's fine on it. Even went to Australia, new Zealand and Japan with it over 3 months. Just made sure hotels had fridges. Emirates stored the injection in their fridges in the way over.

That’s brilliant news, musical, I am heartened to hear it. There’s hope for me yet! Best of luck to all you sufferers.

op, I hope the infliximab works for you 🤞

Thank you all for your replies! I’m still waiting for my first appointment, but feeling more reassured 🙏🏻

I've been on Infliximab and it worked great for a couple of years. I've had Crohns since 2001 and am working my way through the meds. Most of them fail me after a couple of years and so I'm now facing surgery on Monday.

From what I recall I didn't have any side effect from the Infliximab until it stopped working. Then I built up antibodies and had horrible joint pains until I stopped and went on a different med.

Hopefully it will give you a decent spell of calm and improve your quality of life xx