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Test for Remicade levels

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Ulcerative Colitis
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Posted 5/16/2019 4:55 PM (GMT 0)
I know that the test is usually done right before your next infusion, but is there any reason why it can't be done in between infusions? My next infusion (first maintenance dose) isn't until 6/21. I've been flaring since a week after coming off of pred on 4/24. I had my 3rd loading dose on 4/26. Things keep getting slowly worse and I would like to get the test to see how much remi I have in my system so that the doc can decide whether I should increase the dose and get insurance approval before my next infusion.

I hate the idea of going back on pred (really really hate the idea) but it seems like that's where I am headed if something doesn't stabilize soon

My doc is out of the office for 2 weeks and the doc who is covering for him told me a couple days ago that it was "too soon" to check the levels and offered no suggestions on what I should do in the meantime. ~worried and frustrated~
Posted 5/16/2019 6:07 PM (GMT 0)
Well that test is designed to detect the minimum concentration of remicade within your veins, and that is best done within 24 hours before your next infusion.

If you take that test 1/2 way through, you basically never know your minimum (as you're only 1/2 way through). Sure the test might show no concentration of remi, 1/2 way through which has value. Sure, the test might show antibodies which has some value. But you're certainly not getting the full value of the test by doing it 1/2 way through.

We can just flare, even when our remi levels are fine. Remi cannot prevent all flares. Sometimes our docs will move the infusion up one time, as an experiment even without the blood test. My doc did that once when I flared on remi. It is a one-time expiremental thing, and you must regain response to continue at that interval. I did not. So we went to pred.
Posted 5/16/2019 9:01 PM (GMT 0)
Hey CC

I was in a similar situation and my doc ordered a Remi level 4 weeks after my infusion. Based on that level we were able to play around with my Remicade dose. I've had my level checked a few times and they were not always just before my next infusion. Doing this helped me get on the correct dose to get me in remission. I ended up on 7.5 mg/kg every 8 weeks. We scheduled another level in June just before my next infusion even though I am in remission. I know my last level was pretty high so that's why I settled on every 8 weeks and I am doing well. I hope this helps.

T
Posted 5/16/2019 9:05 PM (GMT 0)
oh I should add though that I think my doctor may have moved up my 1st maintenance dose a week or 2 because I was flaring. That 1st maintenance dose is what put me in remission 3 days after the infusion. I remember thinking it was not going to work, but my doc kept me from going back on pred to see if we could use Remicade to induce the remission.
Posted 5/16/2019 9:17 PM (GMT 0)
My hospital made me wait the whole effing 8 weeks so that they could do that test, but they did give me a double dose (10mg/kg) at the same infusion. (And my levels were normal, no antibodies)
Posted 5/16/2019 11:03 PM (GMT 0)
I got a message late this afternoon that the doc who is covering for my doc wants to see me in the office. The nurse said he told scheduling to consider it an Urgent appt so hopefully I will hear from them tomorrow and get in to see him soon.

It's not like I can only get that test done one time ... I know people have them more than that, I've seen some people here say they get them before every infusion until they are in remission.

While I was on pred I was completely symptom free so I was hopeful that the remi would take over once I was off and am really concerned that things just keep getting worse.
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