• 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.

Remicade?

Can somebody enlighten me about remicade? How often is it needed, once a week? Do you eat at all while on it? Sorry, new here and ignorant about so many crohns related things! Thank you...
 
Remicade is an infusion done outpatient at the hospital or at a clinic.

It usually starts out at 5mg/kg for kids, but can be adjusted.

Initially you have a dose at week 0, week 2, week 6 and then every 8 weeks thereafter, though that can vary by patient.

The infusion, start to finish for my son, is about four hours.

During infusions he eats, plays video games, watches TV, snoozes.

Some doctors pre-medicate with Tylenol and Benedryl, some don't.

I'm sure others will jump in soon...
 

kiny

Well-known member
What Mehita said, 5mg/kg every 8 weeks is standard for both adults and kids worldwide.

You can eat / drink / walk around during infusions. The only thing you need to be sure of is that you always have someone close to you, who can shout to a nurse if you have a reaction to the remicade.

The times I got remicade, I was not allowed to lose eye contact with the nurse, meaning I had to stay in her field of view and not go run out into the hall until the infusion was done. I think that's important, because I have seen a few ppl get a reaction and they usually are unable to call for help.
 
I think most pediatric centers require a parent to stay close by. I will only run to the bathroom when the nurse is in the room.

Also, the ped centers usually spoil the kids rotten. We've had snow cone day, had super heroes visit, and gotten small gifts during the holidays.

You may want to have a little discussion about the other kids you'll see at your center. Ours also treats a lot of the outpatient cancer and Leukemia kids and their appearance, while common in the waiting room, is probably not what your kiddo sees much of in his life.
 
Top