For thos with kids on remicade

[killcolitis]

How many infusions did it take to kick in (if it did at all) and how many before they reached remission (if they did). Thanks!

 

[Clash]

It kicked in right away for my son. We saw a 180 degree turn around right after the first infusion. This lasted through the loading doses but when we tried the 8 week stretch his symptoms would return before we could get to the next infusion.

We upped the dose, then shortened the schedule and finally had to add MTX. Although, symptom wise he never got as bad as before we started Remicade, his fecal calprotectin would still be high. He started Remi in May of 2012, MTX in Oct of 2012(when fecal calprotectin was 1700) and in June of 2013 he had a fecal calprotectin of 48. He hasn't had symptoms since April 2013.

Ok all that was a little convoluted but I hope the timeline made sense. I would say C is as close to remission as he has ever been but that is going on fecal calprotectin, lab work and no symptoms.

 

[Tesscorm]

As Stephen doesn't show much in visible symptoms, I can only go on labwork as well. Bloodwork taken just before Stephen's 3rd loading dose already showed his CRP had dropped from 6.5 (before starting) to 0.3, it also showed his HGB had risen (124 to 135). Blood taken at the next infusion (so, two months later, 4th infusion), showed CRP had dropped to 0.2 and HGB risen to 137.

He is scheduled for an MRE on Aug 2 - I'm not sure how long before mucosal healing should be apparent, I'm expecting MRE to provide an answer.

 

[Maya142]

My daughter has been had 4 Remicade infusions and is just beginning to feel better.
I wouldn't say she's in remission yet, but she's definitely in less pain and happier.

 

[my little penguin]

Took 3 infusions and a few days too feel alot better possible remission.

 

[Lori1973]

Thank you for this. I was about to ask the same question. We are waiting on blood test to see if Remicade is the way to go. I have been having a lot of questions and thoughts running thru my head. 6mp just isn't doing it for my son who is also 13 yrs old.

 

[Crohn's Mom]

I'm glad you asked this too, I was wondering the same thing just havent had time to research more

My daughter has just ended Cimzia and will be starting Remicade on Wednesday; we're hoping it helps very quickly !

 

[killcolitis]

Thanks all my daughter's just had her loading doses with good response at the beginning then it wears out and I'm wondering if it's possible that this will build up in her system or if no remission now then that's it for remi?
I hope it works quickly for all who are about to start.

 

[crohnsinct]

Could be the schedule is to spread out or the dose isn't high enough. We went through a bunch of different combinations before we hit what worked. I would say it took us 5 months to hit smooth sailing but noticed some difference right away...but then again she was also on prednisone at the time.

 

[Stephyjane]

My daughter had 3 loading doses end of last year and I would say we had a response straight away, unfortunately due to side effects had to stop.
We are now having to try again due to symptoms returning and she is due to have her 3rd loading dose this week. This time we are still really waiting for a response. We seem to be battling different symptoms this time. Constipation which has required 2 clean outs and lots of pain when eating certain foods. Hopefully the Infliximab will kick in soon, we have an MRE in a couple of weeks which may tell us more.

 

[Tesscorm]

Stephen had the prometheus test hours before his fourth infusion; results showed he had no remicade left in his system so GI has moved him to a 6 week cycle.

Has your daughter's GI suggested testing remicade levels?

 

[Jenn]

Kicked in within a few days of the first infusion for Alex, but he had been feeling really bad beforehand. We never declared remission, he lasted about 7 months before building antibodies.