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Remicade doesn't last long enough - but no antibodies to Remicade

Tue, October 16, 2012 1:14 PM

Anyone had the experience of your child not lasting more than a few weeks of being well after Remicade infusion, then getting tested and finding they have NOT built up antibodies to Remicade and that the medicine is disappearing from their system too soon? Trying to find what might be reasons the Remicade might "disappear".

spaghetti mom
Joined Oct 15, 2012

Wed, October 17, 2012 10:23 PM

They did not say why some metabolize the drug quicker than others......I wonder if they know why.
My daughter did respond to the higher dose and even had a growth spurt. Then things got aggravated again when she started her period for the first time. It was a good sign that she started it but I think hormones can throw things one way or the other.
Her recent blood test showed that she has good levels of the Remicade and that she has not developed antibodies to it. She is doing pretty ok at the moment (knock on wood) and will have her next infusion next week which is increased from 6 weeks to 7 weeks between. Keeping our fingers crossed!

Best of luck with your next infusion.

labfam4
Joined Mar 1, 2011

Wed, October 17, 2012 8:09 AM

Reply posted for labfam4.

Thanks. I know they will try to increase the dosage. Is that working for your daughter? Did they offer an explanation as to why it is metabolized so much more quickly in some people?

spaghetti mom
Joined Oct 15, 2012

Tue, October 16, 2012 6:37 PM

Reply posted for spaghetti mom.

Do you know what dose your child is on? My child had to have her dose increased and the length between treatments shortened; with the hope of gradually being able to decrease the dose and lengthen the time between treatments. Also, is your child on Methotrexate? Some docs say that it will help to keep from creating anitbodies and to increase how long the Remicade will work.

Best of luck

labfam4
Joined Mar 1, 2011

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