Remicade Mistake in Hospital, 17-year-old newly diagnosed

For the first one, that was incredibly fast. I just had my first one two weeks ago, and I believe it took almost three hours to empty the bag because they wanted to avoid any reactions (Luckily, I only had a headache the next day). I would definitely mention this to the doctor/nurse or whoever gave it to him. I've heard that if it's given too quickly there can be some bad side effects. Of course, I am just a novice at this, but I do know they should have taken it slow for the first infusion.

Medical errors like this are fairly common. I hope your son is okay.

P.S. to Kat: Is your daughter's UC confined to one area, or entire colon?

My daughter was diagnosed quickly, and did not achieve anything near remission until Remicade. She was in the drug trial that eventually approved the drug for ped use,so she got the lower dose first, and then was reassigned the higher dose at closer intervals. There was lag time before significant improvement...aprox, 2 months. Event infusion helped a little more as she weened from pred.
Her UC is still left-sided, and it was so damaged that they abandoned a colonoscopy due to spontaneous bleeding. full lower colon a mess.
And yes, she finished high school, went off to college and was symptom free until this spring. A bout of extreme mono, EBV virus that could not be tamed seemed to start the trouble, then as we considered abandoning the Remi, it just stopped working. There was still therapeutic levels in here system, so they didn't even try the Humeria route. I hope your road is smoother...keep reading these posts and you will learn a lot!

Yes, way too fast. It should take 3-4 hours. After about three years, they finally started giving it to me at 1 1/2 hours, but it was only after they knew I didn't have any reactions.

Eventually I did have a reaction by it being administered too fast, and it was rapid heartbeat, vomiting, and swelling. I discontinued the remi after that, but only because I had two clear colonoscopies (thanks to the Remi) and my doc decided I'd be fine on mesalamines. Hope your daughter feels better soon. Take care.

Lonie, Remicade infusions are supposed to be 2 hours, not 3-4.

The reason why the infusions are administered over 2 hours (and why the speed is increased in 6 steps) is because that's how they administered it in clinical trials, in case of allergic reaction. It probably won't have too much of an effect if it was accidentally administered too quickly, or more slowly.

Bellasmom, there are tons of drug options - Remi is usually the last thing to be tried. There are 5ASAs, Imuran/6MP, antibiotics, and a host of different enemas. Plus Humira. I onestly can't understand why they didn't keep your son on Pred to get the flare under control while they started another less severe medicine. But the bottom line is that, yes, there are lots of medical options.

PS others on here will tell you about LDN and fecal transplant and all kinds of dietary restrictions. Take those as you want, some people claim they have achieved good results, at least for a time.

I think it depends how much damage there is in the colon before the decision is made to offer remicade,, there are many different opinions, but I know when they offered remicade and it worked I said thank you,,,we were not in a position to wait...often it may be the first drug..to prevent more damage....
I am not happy about it but the alternative was not good at the time.

The 2 hours is to limit reactions. Faster rate may increase that during first time infusions (about up to 10 times I would guess). Faster rate theoretically shouldn't decrease effectiveness. At least you know and can tell your son to make sure people do their job correctly next time.

Hi Bella's mom -

There is one school of thought that is to treat using the "big guns" of medication first, and given the speed at which this all happened and the state of his colon, your docs decided on that. It's exactly the right thing to do in some situations, my GI tells me. If you think of the "mildest" medications as the bottom of a pyramid, and the biggies like Remi at the top, your son is being treated with the "from the top" theory of medication. The concept is to stop the flare asap, and THEN think about maintenance.
I hope it goes well for him! My son has only had one minor flare since his initial pancolitis (in which he missed the last 2 months of his middle school time) and that minor flare was taken care of by a course of Flagyl.
<KNOCK ON WOOD>