Infliximab worries

It's still possible to get a response from infliximab/remicade, however, I'd have a backup plan of another treatment to try, like entyvio, in mind just in case it becomes necessary. You should be getting a response soon, if you're going to get one. I'd wait a week after the 4th infusion and assess. The odds are 64 percent of patients have an initial response to Remicade, so a response is not guaranteed.

I had my first positive response to Remicade a week after my 2nd infusion, a much bigger improvement a week after my 3rd infusion, and steady improvements thereafter until I reached remission. Achieving remission took a full year for me, even while on Remicade. I tend to heal very slowly on pretty much every uc medication out there.

Are you on any other medications besides infliximab/remicade?

The only other medication I'm on is Pentasa as I kept reacting to all the others and even a high dose of steroids make me manic.
I had my first infusion and then another a week later and then another 4 weeks later, my next (4th) one is in 8 weeks.
I'm seeing the consultant on Monday so I'll ask him if there is anything left that I can take, which I doubt but let's see. lll ask if I can have it sooner than 8 weeks, seems like quite a long gap or an increase which I doubt as he wasn't to impressed when they first put me on it in A&E .

I agree with the others...it's too soon to give up on remicade. You have the option to increase the dose up to 10mg/kg and/or shorten the duration to 4 or 6 weeks. I am currently in 5mg/kg every 6 weeks but did every 8 for several years. Enemas are a great idea as well and something I used while flaring along with prednisone. I hope you have success with remicade!

Edit: If you feel like your symptoms are getting worse, have your stool checked for cdiff.

I have enemas but they don't seem to stay in, at first they were fine but as my urge has increased I'm lucky if they go in far enough before it all just comes gushing out! 🙁

Good to know there are other options if this doesn't work, just don't know if the consultant will agree to change or even increase.

I thought too about C-diff as I've had it before, I gave a stool sample on Thursday voiceing my concerns but whether they will test for that I don't know, I hope so!
I'll speak with the consultant on Monday and see if there is anything else I can go on or do?

Thanks for all your advice - I find that the IBD nurses and consultants to some extent know what their talking about and sometimes not ( like food has nothing to do with it......really!!!!) but don't actually know what this feels like and at times don't give the best advice!!