Positive initial response to remicade ... but third infusion it stopped working?

Hi all, when i started remicade i had a great response to it pretty much overnight. The abdominal pain, urgency, blood, diarrhea, and everything else was gone within the first day. I felt great and I was so happy it was working.

A week before the third infusion, though, some symptoms started to come back, as in the blood, mushier stools, etc. Then, a day before the infusion, the bloody diarrhea came back, going 4 times in that day. I thought the infusion would bring me some much needed relief as it had the first two times, but that was not the case. Now, it’s 3 days after the infusion and my symptoms are still present - diarrhea about 3-4 times a day, sometimes with blood, stomach pains, and urgency. Although i do think the blood has gone down a bit.

Could I already be developing antibodies? Or could this just be a delayed response to it? What could it be? I just want life to be like what it was when the remicade was working. I am just so frustrated.

I had a long talk with my first GI doctor about this. He was pretty open minded but unfortunately was about to retire. I had the same pattern as you. The first two doses were golden and then by the third it seemed to be wearing off. They then increased the dose and when it didn't hold they concluded that remicade wasn't the drug for me.

A few months later it was discovered that I had multiple parasite infections that their standard O&P test was not detecting. I had sub-clinical giardia, blastocystis hominis, e. histolytica, and serious candida overgrowth.

My GI doctor at the time said that despite popular opinion, sometimes the immune system is not suppressed by Remicade. Sometimes the opposite happens... the body works twice as hard to work around the Remicade. This is what happened in my case. My immune system was so strong that it bypassed Remicade to keep fighting the infection. Once the infection was cleared with drugs my flare went away. (Unfortunately I still have UC but nowhere as severe as that time.)

A year later my next GI doctor tried to re-introduce Remicade and it triggered drug-induced lupus right away because I already had prior exposure. I was really upset because it immediately meant I could no longer take the drug, probably forever.

So one thing you could do, without going off Remicade, is insist on comprehensive testing for parasites. You might even have to go through a private company. That's what I did, through my GI doctor. If you clear the offenders the Remicade could work.

Also if you aren't doing any diet changes, you might want to look into that. Cut out the most common offenders. When my flares are 10/10 I cut out all grains, gluten, dairy and refined sugar. It's only temporary and once I have more healing I introduce foods slowly. If your immune system is so revved up that it won't even back down from Remicade then something is off... like a food thing or a pathogen thing. No guarantees though -- part of the guess work of having this nightmare condition.

Glad you found the cause. C diff is a bugger that can poke up unexpectedly at any time with us (we're much more prone to get it than the general population). So always remember to test for it when we have a sudden worsening of our symptoms. Some times c diff is a one time episode, and other times it can pop up again and FMT is warranted. Good luck!

for some it takes repeated courses of antibiotics, or FMT. Some get a good response from 1 course - but it is near drug resistant. Very hard to kill. May people get re-occuring flares of c.diff.