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Delayed infusion reactions

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Ulcerative Colitis
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Posted 4/8/2017 3:58 AM (GMT 0)
Hey everyone,

This is a real novel so bare with me, I just want to make sure I'm not leaving anything out.


I've been on Remicade for about a year now, and it's kept me in remission. But there's an issue here, after the first few times I tried remicade, I would get a reaction to it about a week later. I would experience flu-like symptoms, as in I would be nauseated, I'd have chills (but no fever), and my entire body would ache like nobodies business! Now, this went away and things went great for a long time...

Fast forward to last week. I get my infusion, and they actually had to slow it down as my BP dropped to about 93 (which isn't terrible but it was lower than they would have liked, and I got hot in the face and they said I looked a little flushed) Well, I get out of there and I feel okay but these last few days my legs and joints have been aching, and this morning I'm at work and I start having a hell of a time breathing, and felt like I had something stuck in my throat (got a little phlegmy too) I also got real dizzy and once again....hot. I went and bought some Benadryl and took two of those, and shortly thereafter I almost fainted a couple of times. Like I'd be looking at my phone and all of a sudden I'd catch myself falling. Scary times. It was then I went to the ER.

I get to the ER and they take my BP again, it's back at like 93-94 from 126 a few hours earlier when I bought the Benadryl. And once again I keep feeling like I have to keep myself from fainting. After being on a drip for awhile I then feel better, and my airways feel clear once more. They looked at my labs, and the one thing I overheard is that I heard them say that my eosinophils were high? I haven't been flaring lately, but would this indicate an allergic reaction to the remicade itself?

I also suffer from anxiety, so at times it's hard to distinguish between what is a product of my own imagination and what is really going on. My GI doctor doesn't think there's any correlation, and wants to keep me on remicade.

Any thoughts?
Posted 4/8/2017 11:09 AM (GMT 0)
It could be an anxiety or it could be related to your immune system creating antibodies to remicade/infliximab. Generally there's a higher incidence of reactions during or after a remi infusions when antibodies are present (dropping blood pressure or pains are examples). Test that idea out. I'd recommend getting a Infliximab Concentration and Anti-infliximab Antibody blood test, it's offered by Prometheus labs, labcorp, and other global labs. Ypur gasteroenterologist should be able to order that test for you, ask. If you have a build up of antibodies then that test will show it. That'd be evidence to switch to another med like humira. That'd give you some relief if it were the actual cause.
Posted 4/8/2017 9:03 PM (GMT 0)
That's not a bad idea, and a for sure way to find out. Thanks!
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