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Remicade infusion reaction

Hi Everyone-
On my son's 3rd Remicade infusion, he had a reaction (flushing, chest tightness, low bp, increased temp) about 10 min in. They immediately cut off the infusion and gave him Tylenol and Benadryl. We waited an hour and restarted the infusion. The rest went smoothly.
Our next infusion is Thursday and in worried about another reaction, I asked if we should pre-Med at home before arriving, and they said they will give him steroids prior this time. Is that standard? Why wouldn't we just do the Tylenol/Benadryl again?

my little penguin

Staff member
It's standard treatment to do iv solumedrol prior to remicade when you have already had an allergic reaction.
Tylenol and Benadryl are comfort measures (itching fever etc..)
But will not stop anaphylaxis
Your child is at very high risk of anaphylaxis to remicade now.
The steroids will calm his immune system some so if he reacts again it MAY be less severe .
Anaphylaxis can only be stopped with epinephrine when given early enough some times
But other times it progresses to anaphylactic shock or death .

It's like labor once your child's body has done it once the second time it's quicker and faster

Anaphylaxis symptoms occur suddenly and can progress quickly. The early symptoms may be mild, such as a runny nose, a skin rash or a "strange feeling." These symptoms can quickly lead to more serious problems, including:

Trouble breathing
Hives or swelling
Tightness of the throat
Hoarse voice
Abdominal pain
Low blood pressure
Rapid heart beat
Feeling of doom
Cardiac arrest
People who have had a severe allergic reaction are at risk for future reactions. Even if your first reaction is mild, future reactions might be more severe. That's why it's important to carry self-injectable epinephrine if you are at risk, and 911 should be dialed in the event of a very serious reaction.

Understanding anaphylaxis and the things that can trigger this severe allergic reaction will help you manage your condition.


Benadryl is like a flight attendant during a plane crash
They make the passengers feel better but don't stop the crash

Anaphylaxis is having more than one system involved your child had more than one last time and thankfully it stopped in its own .

Ds has had anaphylaxis to foods and bees.
He has also had a allergic reaction to remicade
We tried again later with remicade and gave iv solumedrol prior and he still reacted
So he was switched to humira since they knew the odds of severe reaction that they may not be able to stop was too great

They should have explained the risk to you

Please consult your child's GI

Ds had allergic reaction to contrast dye and glacogen /galullidium during and MRE
So he was pre treated with iv steroids with multiple doses for the day prior and then right before his scan .
He was ok during the scan -no major reaction
But not something any of us or the doctors want to repeat unless absolutely necessary

Good luck
And talk to your doc
The Dr was actually visiting us when he had the reaction. She was trying to blow it off like it wasnt necessarily an infusion reaction. The nurse said it was most definitely an infusion reaction. Makes me nervous how non-chalant she was about this. But she is the one that said he'll get steroids beforehand this time, so I guess that's good.
My daughter also had a reaction during her 3rd infusion. Same type of thing ... hot and flushed and felt a tightness in her chest. Her GI doc said a reaction can be most common during the loading doses. They stopped the infusion right away and treated with Benadryl and we tried again the following week with no issues. They now pre-treat her with IV steroid, along with the Claritin and Benadryl and Tylenol. And she has had no reaction since (that was March 2016)
My son has always experienced a slight reaction during his infusions. About halfway through the infusion he would feel warm and get pale. The nurses would monitor him closely, but his vitals were always good, so they never considered it serious. He was always pretreated with Tylenol and steroid, until this last infusion where the nurses omitted the steroid. When I asked why, they told me recent studies have shown that it offers very little benefit. I found that odd, but it was the first time my son felt perfectly fine throughout the infusion-I still think he turned a little pale, but he didn't feel too warm.
So today they gave him Tylenol/Benadryl/solu medrol beforehand and less than a minute into the Remicade, he had flushing, chest tightness, vomiting, pulse of 80. We are waiting on a plan. Dr is considering doing a higher dose at more frequent intervals or changing to humors, but doesn't seem to know what to do. She is discussing with other drs. They also drew a Remicade level, but takes a week to get results?? Ugh. Was thinking the Remicade was working too since he's been doing so well. Very nervous right now.
So sorry to hear about the reaction. And yes, the levels results will take 1-2 weeks to come back. :ghug:

my little penguin

Staff member
So sorry to hear
For ds when he had a second reaction even though they gave him Tylenol Benadryl and solumedrol iv
We were told the risk was way too high for anaphylactic shock (death)
That the next time or the time after that etc... they may not be able to stop the reaction
Ds was immediately switched to humira
That was in 2013 and we haven't looked back since

Before you get another infusion -I would seek a second opinion
We were told the standard of care was not to be permitted to have any more infusions

So very sorry
It is scary but once we switched
Humira can be given at home
No Benadryl or Tylenol needed
Five minutes tops and the shot is done
Take it on vacation etc..,

Good luck