• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Low remicade levels

Hey everyone,
Just got the test results back for blood test on 4th infusion, and sadly looks like low remicade levels detected for my son. Dr. said he would up the dosage at his next appointment. Hoping for it to work. Any experience with dosage adjustments?

my little penguin

Staff member
They adjusted Ds for remicade
Most kids need higher dosing
They burn through it faster than adults typically
Ds was on 7.5 mg every 6 weeks
Never made it at 5 mg every 8 weeks

same with humira needed higher frequency (dosing is fixed at 40 mg)

and the same now with Stelara
Standard dose is 90 mg every 8 weeks
High dosing is 90 mg every 4 weeks
That is what Ds is on
Hello, we have lots of experience with remicade and changes of dosing. When my son started, he could not make it to 8 weeks - this was right at the start - he had a reloading dose and was increased to 5 mg every 4 weeks. He had almost zero levels of remicade and a flare after his first loading doses were completed. He did so well for a few weeks and then would drop off quickly. The increase to 5 mg/4 weeks still wasn't enough. He was good for 3 weeks and then started showing symptoms again - this went on for a few months and then he flared badly again. Another blood test - almost zero levels (this was about 6 months in now. GI increased again- this time 10 mg/4 weeks. This seem to be what worked. He had another blood test, 6 months after that, and was at level 10 which was a great level. A year later, another levels test revealed Remicade levels at 28 - very high - and now he is back down to 5 mg/4 weeks, and will have another blood test in the near future to see if it might change again. He has been doing really well once the dose was increased and has been on Remicade since Sep 2018.