Ok so I've had 6 infusions since last october, and I'm no better than when I started it, and I'm now getting it every 6 weeks, although thats only happened on my last infusion.
I'm also getting really bad joint pains, which it only occured to me yesterday, that it's probably the Remicade causing this. I don't recall having joint pains this bad before I was on it. I have had Remicade before about 5 years ago, and it worked well for me, but they stopped it while it was still working, because of the cost I've since found out. I think I've probably built up antibodies to it, and that's why I'm getting joint pain.
I'm due my next one in 4 weeks, and I'm planning on going for it, because I've only had one at 6 weeks. I'm facing having a colostomy bag if this doesn't work for me and he wont agree to letting me try anything else, so I'm abit desperate now. I have tried Humira but got a bad infection so had to stop it. I would like to try it again, but he told me it wasn't working after 2 months, but I don't think I gave it long enough, and I couldn't tell if it was working or not because I was so ill from the infection anyway.
I haven't had any other reactions to the Remicade, so I don't know if its worth carrying on with it to see if it works, or have I given it long enough?
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.