Question from a Remicade patient

So I've done some searching and I cannot seem to come up with an answer. I've been on Remicade for almost a year and I've noticed at trend. about 2 weeks before my infuison I get the chills and a fever of about 102 for about 2 days. I generally feel worn out and have to call off work. While the fever subsides the "crappy feeling " stays with me for a week and it takes that long to get my appetite back. The first time it happened I figure it was just a cold but the fact that it has happened a 3 rd time leads me to believe it's the remicade. As anyone else experienced similar? Thanks for the help

I was on Remicade for about 8 years or so. I'd have that happen very occasionally. I don't think it's the Remicade, as I still have that happen now, and haven't taken Remicade since 2010.
I've asked my GI about it and he said it was likely a manifestation of the Crohn's itself. It seems to accompany my flareups, usually.

I'll get those sudden spiked fevers, 103 to 104 degrees, then they'll taper off over a few hours. Usually within 12 to 24 hours I'm back to normal. The big issue for me is how suddenly they come on. I've had two in the last week. First on was a week ago. I stopped at my parents house to pick up my son. While I was there I walked about 100 yards down the mail box. No issues, perfectly fine. By the time I walked back to their house, I was shivering uncontrollably and felt terrible. This all took a few minutes at the most. Took me about 12 hours to get over that one, but have been feeling like crap for about a month and a half.
Last one was Sunday. I was at church, feeling fine. Within a few minutes I knew it was happening again, it was all I could to to get somewhere that I could lie down. Shivering uncontrollably again. By the time I got home (about an hour later) my temp was 103.

Probably one of the things I hate most about the Crohn's. I usually don't have any warning they are going to happen. They come on so fast it's hard to believe, and it pretty much incapacitates me.

Oh, and the joint pain that goes along with it all just destroys everything else.

Thanks for the help, I'm going to talk to my GI at my next infusion and see what she thinks.

I don't think you should be having any more remicade treatments. I would talk to my GI about it if it were me.

Julia

It sounds to me like you're starting to flare before your next dose, too.

There is a blood test that can be done (in the US anyway) that can tell you if there is enough medicine in your system toward the end of your 8-week (or whatever time frame) infusion cycle. I think the blood draw is supposed to be done 1 week before your next infusion.

The test also tells you if your body is making antibodies to fight the medicine, which would also decrease its effectiveness, and could lead to reactions.

I think there's only 1 lab in the US (Prometheus) that does the test (it's called "Anser IFX"), but you should be able to find a local lab can send a blood sample there and you'll get the results in a week or so.

The test is expensive (around $2500, I think). My insurance covered most of it, but you may want to check on that before you do it if cost is going to be a concern.

at first, remi was a wonder drug. i felt almost normal a day or two after the infusion, no other side effects really. i couldnt believe it. at times, i forgot i even had stupid crohns.

then i had the Prometheus test done because i was getting flares towards the end of my 8 week cycles, sometimes around week 5. these flares were far worse than flares i had before i started remi. i would also get severe, migrating joint pains in this time too.

i then got my remi moved to 6 weeks but i think the prometheus test showed that my antibodies are too high and we are going to switch me to either humira or cimzia soon.

this past week, about 4 weeks after my last infusion, i started to flare. then this past weekend, i started throwing up everything, including water, which ive never done before. of course i was at a beach house in california w/ my girlfriends family (crohns always has the greatest timing!) so i tried to switch to a liquid diet, but just kept having major D and barfing after one ritz or drink of water. so i didnt eat for a couple days and didnt really drink either. spent Monday in the ER and am now spending the week at home on prednisone (the devil drug!) which will hopefully hold me over until my next remi treatment on tuesday. but i am now able to drink and eat small meals! o m g - crackers and noodles never tasted so good!

also, my GI said to be wary of any fever over 100.5 degrees while on remi.