Update, questions....

Did they also measure your 'trough levels?' (in other words, the levels of infliximab in your system just before you're due for your next infusion, when those levels should be at their lowest)

If you don't have antibodies to infliximab (ATIs), but you are not responding as well as you once did, then it's quite possible your body is using it up too quickly and that's the issue. The trough levels would indicate this (there should be some left in your system from the previous infusion, but if not, then the trough levels are really low, and that indicates you need a higher dose and/or more frequent infusions).

Sorry, I can't remember if you said this before in your other post or not, but can they up the dose and frequency of the Remicade? The standard is 5 mg/kg every 8 weeks. I get 10 mg/kg every 6 weeks, and some people get that dosage every 4 weeks.

Are you still just on 50mg of imuran? If so, that's a low dose. It's usually dosed around 2.5mg/kg of body weight (which works out to be around 1mg/pound, so a person weighing 125 would take 125mg/day).

Methotrexate might work, but there's not a ton of data on it for Crohn's, and what data there is shows it's more similar to imuran's effectiveness (ie, decent, not great results) and not as good as the biologics.

Before switching anything, I'd suggest a higher dose of imuran - assuming you can tolerate a higher dose. But even then, I'm not sure that would be enough. So I'd also suggest maximizing your odds of success on Remicade by taking 10mg/kg every 6 weeks, or even 4 weeks, as scifigal2k suggested. If you do all that and have no success, then and only then is it time to switch to something else, IMO.

EDIT: Just saw your reply, which came in as I was typing this. Did they say what your trough levels are? ie, how much is in your system at 8 weeks?

Hi Dikid,

I seem to be in a similar place to you - they won't increase my remicade dose, as the levels pre-infusion are still high, and antibodies aren't there (still waiting on the results from last week). I am also taking 15mg methotrexate a week (and folic acid), as I can't tolerate the alternatives.. It's a mystery.. I'm waiting for a scope before they decide what to do with me next..

I hope they work something out for you..

I know what you mean - Remicade worked so well for me I felt like a whole new person, but the 'old me' is slowly returning, the thought of switching is anxiety (and therefore flare!) inducing! I think methotrexate is a slightly hard drug, so is weight dependent and (from what I can gather) can't be increased.. There's always something isn't there! Wouldn't it be great to just respond to something and keep responding to it?!!

When I started flaring on Simponi they added 15 mg methorexate injections weekly and it did nothing for me. Although several people report side effects from MTX and I had zero side effects also so maybe my body just doesnt respond to it. I actually ended up with one of my worst flares ever while on the Simponi and MTX combo. I never tried it with Remicade as that worked fine for me on its own while I took it.