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Inflectra Levels / Increasing Dose

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Ulcerative Colitis
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Posted 6/26/2020 7:03 PM (GMT 0)
Hey there,

For those on Inflectra/Remicade--do you know what the therapeutic levels should be? I had mine tested and I don't have antibodies (yay!) and my level is at 3.52. My doc wants to increase the dosage from 5mg to 10mg at next infusion saying my level is too low.

A few notes: I have been in remission for a year doing great and this test was done right before I'm supposed to get my next infusion (so in my head, it would of course be on the low-ish end). I did some internet research and almost everything I've found says acceptable range is 3-6ug/ml. So curious if anyone has experience with this test and the appropriate levels. Side note: I've been on Imuran for almost three years now so we're talking about stopping that altogether.

I'm trying to do what I can do wean OFF these crazy medicines vs. escalating dosage for no reason!

Thanks,
David
Posted 6/26/2020 10:27 PM (GMT 0)
I think it should be above 5 although it's a few years since I had the test, hopefully someone else can chime in...
Posted 6/27/2020 5:43 PM (GMT 0)
It's the low end of the range. I think mine was around that and because I still had mild symptoms we increased the dose to 10 mg. I have read that many in complete remission are in the high teens or low 20s. Some have gone to 7.5 mg. Talk to your doc and express your concerns. If you are completely without any symptoms maybe you could just increase to 7.5 mg.

Don't believe I have ever heard of anyone tapering off biologics and maintaining remission. Not saying it's not possible -- just that I don't remember hearing that works. Better to have a cushion of a higher levels when you are getting off of Imuran.

For what it's worth my advise for that is to go slow when you do it. It takes a long time for Imuran to build up in your system. My theory is that if you go slow getting off -- say 25-50 mg every month or so ... if any symptoms do crop up you can increase your dose and get back to therapeutic levels faster.

It likely took you a long time to get to where you are. Be careful rocking the boat.
Posted 7/2/2020 9:22 PM (GMT 0)
I appreciate these responses. I mentioned in another post that I just feel like GI's have this one sheet that tells them how to respond to situations like, "Oh your Inflix level is a bit low, we have to DOUBLE your dosage." It's frustrating to have to increase medicine when I am doing well and in remission, just because of a blood test we ordered for a whole other reason. That said, if we didn't order that blood test we wouldn't know what the level was and I'd continue at 5mg, which still could be working. I constantly have a feeling I'm overmedicated or was wrongly medicated in a weird order. But I appreciate all the input here, I often cite this message board as a sounding board when speaking w/my GI. It's good to know how others have handled similar situations.
Posted 7/6/2020 10:20 PM (GMT 0)
Generally you want 5-7 or more. It's not well studied and nothing known in absolutes. My gasteroenterologist said some of his patients do well at 5, some need 7, and some higher still, so it varies.
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