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How long for remicade to work?

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Ulcerative Colitis
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Posted 2/17/2020 5:33 PM (GMT 0)
Hi all,

I’m feeling a little negative recently. I had my first remicade infusion 2 weeks ago and due my next one tomorrow. Can’t say I’ve seen much improvement and feeling pretty rubbish today. I’m already on max dose of mesalazine and 6mp and allopurinol but doesn’t seem to be enough. I’m starting to feel like nothing is going to work for me...

How long did remicade take to work for you?
Posted 2/17/2020 5:54 PM (GMT 0)
It took 4.5 weeks for me. Tried getting off pred sooner than that and couldn't, but I got off of it at the 4.5-week mark and was fine.
Posted 2/17/2020 6:13 PM (GMT 0)
Thanks. At the moment I’m not on any steroids, I’m not bleeding but having more pain and needing toilet etc... sigh. How are things with you?
Posted 2/17/2020 6:36 PM (GMT 0)
I hope it works for you and soon! That's nice you aren't on steroids so you'll actually be able to tell if it's working. My UC is fine, but I'm still on Uceris for another week or two. Been having this crazy dizziness, though it seems to be improving. Good luck with the Remicade!
Posted 2/18/2020 1:22 PM (GMT 0)
Remicade shows an initial response in 6-weeks or less, if you're going to get one (and about 65% of us do get a response). A remission might take another month or months thereafter.

I had my first small, positive response at week 3, a much bigger response at week 7, I was off of pred by week 9, and I continued a slow and steady improvement thereafter until I reached a remission. Still in a remission from it today.
Posted 2/19/2020 8:45 AM (GMT 0)
Thanks John, can I ask what were the signs you had it was working?

Trouble is for me I'm not on steroids right now and my main symptom is cramping /discomfort when I wake up... I'm not bleeding and having a normal number of bms. So i guess my symptoms are fairly mild... I've just heard of people being in a really bad flare and it literally working overnight and so I'm questioning why is it not happening for me when my symptoms are relatively mild?
Posted 2/19/2020 5:45 PM (GMT 0)
I was on pred for a very severe flare when I started remicade so not sure when it actually started to work. I was off pred just after my last loading dose and mild symptoms started coming back (frequency, blood and formation). Added 6MP but had to stop due to side effects. Symptoms remained very mild, but after a few months doc increased dosage. That really kicked in but I noticed that it was wearing off before 8 weeks. I started 6 weeks in late January and will have my next infusion 3/7. So far so good. Fingers crossed that this is finally remission.

Remicade wasn't fast for me (it's taken me a year to get to where I am now) but I slowly saw improvements week to week. Try keeping a journal and compare your symptoms week to week rather than day to day.
Posted 2/19/2020 7:23 PM (GMT 0)
Remi's signs of working where that my bm frequency decreased, and urgency decreased with accidents disappearing, and stool became more formed. Given not all of that happened at once, immediately. One week, on average I might poop one time less a day, the next week, my stools began on average looking more formed, the next week, urgency was noticeably better (I could take a more leisurely stroll to the bathroom, maybe get a snack from the kitchen before having to go, versus run for my life). It was small, cumulative gains over the course of a series of weeks and months. A full remission did take a crazy long time, I healed to 80-90% fast, but regaining that last percent took a long while to consistently poop once a day fully formed without any urgency at all.
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