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Symptoms while on Remicade

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Ulcerative Colitis
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Posted 1/28/2019 8:14 PM (GMT -5)
So my son was diagnosed last June with moderate to severe pancolitis and he has been doing great on Remicade. After 7 months on Remicade and no symptoms he had blood in his stool three weeks back for a couple of days which resolved by itself. His doctor told us not to worry about it and to move him to infusions every 8 weeks (from 6 weeks currently). This week he is getting some mucus and urgency once in a while. There is no diarrhea or blood and he still going 2/3 times a day which is his normal. Should we go ahead and let his GI know about the mucus and occasional urgency or is this quite usual?
Posted 1/28/2019 8:48 PM (GMT -5)
Blood in stool, even a small amount, is never normal nor is mucus. These would be indicators of at the least low grade inflammation still brewing. What decision lead your doctor to go to 8 weeks infusions instead of 6, especially with some symptoms present? Did they even do an infliximab trough level test? I would definitely let your doctor know about your son's current symptoms.
Posted 1/28/2019 8:58 PM (GMT -5)
Okay, yes they did a Remicade level test and the level was fine. His blood test results were all good so the doc decided to move him to 8 weeks (even after we told him about the blood).
Posted 1/29/2019 11:23 AM (GMT -5)
Is Remicade the only UC medication he is currently on?

I'd say remicade levels are bit unclear, more of an art rather than a science. Greater than 3 is good, but some might need 11 to sustain a response while others do fine on 3.

You might want to stick to 8-weeks for another cycle given the uncertainty of the blood. Or at least agree only to a 7-week interval for a couple times before considering 6-weeks.

I'd always prefer caution, slow tapers over most things.
Posted 1/29/2019 11:36 AM (GMT -5)
Thank you. He takes methotrexate also once every week at a very low dose to prevent antibodies for Remicade from forming.
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