Oh joy ... Remicade-induced fatigue

So I've been on Remicade for not quite a year. After my loading doses, I was getting sicker pretty quickly between infusions, so we upped my doses from every 8 weeks to every 6 weeks, and from 5mg/kg to 10mg/kg. Even then, it still took hydrocortisone enemas to really knock my flare down.

I've been in remission since July, and my doctor has kept me on the higher/more frequent doses of Remicade since then, to make sure we really solidly get me in remission, which is excellent. Except I keep getting fatigue immediately after each infusion.

The fatigue starts within 12 hours or so and hits pretty heavily. It was a struggle to wake up today, and even more of a struggle to get up and out of bed. It feels like someone stuck me with a tube and siphoned out all of my energy. It'll last for about a week, although improving slightly every day.

Anyone else have experience with this? I'm hoping it's not something that'll happen with Remi in general, and that it's more specific to the heavy dose I've been getting.

It should go without saying, but I prefer one week of heavy fatigue to the nightmare that was my latest flare. I'd just rather not get completely side lined for a week every 6 weeks!

oh yeah. lots of people have this side effect from remicade. i always called myself a remicade zombie. i needed 12 hours of sleep every night but who has time for that? i just couldn't get enough sleep.

Me too - Remicade wipes me out for a couple of days. I am also on 10mg / kg but every 8 weeks. The infusion lasts about 90 mins. You will just have to plan your life around it, I ensure that I take the whole infusion day off and try to have an early night and keep friends and family away.
But I would gladly suffer this than the effects of a flare and / or being on prednisolone.

Post Edited (Dynamo1) : 2/20/2014 7:39:11 AM (GMT-7)

I get the minimum 5mg/kg every 8 weeks. I never notice much of a difference in energy levels... except that after sitting there for a few hours I am a bit more low on energy than if I'd been active the whole time.

Never had any fatigue with Remicade: as soon as the Benadryl wore off, I was back to normal. I dunno if that's associated with the Remicade not working for me, though. Might as well have been having water infusions for all the effect it seemed to have.

I have no bad effects from Remicade, I can just go about my day. I made up my mind it would be so, no one would know. I believe you have some control over this!