Warning: Remicade Reaction

[Zinnia]

Hello everyone! I am writing this for anyone who is new to Remicade. Please make sure, before the infusion begins, to ask the nurse where the epinephrine is located. Remicade is a powerful drug, and many people do well on it. Within seconds of starting his third Remicade infusion, our 5 year old went into anaphylactic shock (severe allergic reaction). We were in the GI suite of a hospital. The nurse froze and did not follow emergency protocol. Luckily I recognized what was happening and administered an EPI Pen that I keep in my purse for my other child's allergies. So, please be aware that there is a small possibility of an allergic reaction to Remicade. Make sure your medical staff members are prepared for it. Policy was changed at our hospital. EPI pens are now kept at the nurse's station, not locked in a cart down the hall. Good Luck.

 

[hannah-rose]

Hi Zinnia, I'm really sorry to hear about your child's reaction, I hear serious Remicader reactions are rare, so you must've been very unlucky. I can't believe that the medical staff didn't know what to do, that's shocking. When I used to have infusions I felt very well taken care of, and had anything gone seriously wrong I know I would've been treated. I started to get minor allergic reactions during my infusions (rashes, throwing up) and they did give me benedryl and hydrocortisone but the GI decided it was safer to use Humira instead, so I'm on that now. It's not as good as the Inflix but it keeps me stable and well and I don't have side effects.

 

[rygon]

That is really bad, but I guess its hard to know how people are going to react in stressful situations. Im surprised there wasnt other nurses around to help! Im glad that you was quick off the mark

I know at my hospital there has been 1 allergic reaction like that, luckily there is an emergency trolley with all the necessary stuff like EPI pens close by.

 

[KayleighMeek]

I'm sorry to hear that your son had this reaction I had an anaphylactic reaction to remicade as well luckily I had a crash button next to my chair that one of the nurses hit so loads of dr's and nurses came running in. It's awful that he had poor care in that situation. X

 

[Johnnysmom]

I am sorry you had to go through that Zinnia. But so glad you had an epi pen and were trained how to use one. A mom just goes into action, there is no freezing up when it comes to our kids.

Your advice is invaluable, I would not have thought to say something in that situation but clearly the second it takes to ask can save a life.

So glad your 5 year old is doing ok. ((((Hugs))))))

 

[Devynnsmom]

OMG I'm so sorry your son had such a bad reaction! I'm glad he's ok.

 

[my little penguin]

Sorry to hear about the reaction.
Most have standing orders prior to administering remicade on what is given for what symptoms.
My son had a mild reaction at his last infusion . The staff handled it very well.
But just like you DS wears his own set of epi pens and have given them before for allergies so no real worries

 

[jmckinley]

I can totally agree with Zinnia! Ryan's reaction was very similar. He was fine, I looked down at a book, looked up and he was blood red and could not speak for his airway closing up! Even if they've been taking it awhile, keep a watch. Ryan's reaction was about the 7th infusion. Thankfully, the nurses were right there and took action quickly! But looking up and seeing him was startling.

 

[CarolinAlaska]

So horrible! I'm so glad he is alright!

 

[Brian'sMom]

Brian's reaction also similar. Its soooo scary. We were in an infusion room so they had all the stuff to help him quickly...but I did run down to get them. I'm sure they had a nurse button but I didn't think and just ran to get them.

Zinnia, what are they going to do going forward? 5 years old!! That's young to experience that. How is your little one doing?

 

[SherylZellis]

Hi
My son has had 3 Remicade tx. Each time they give him solumedrol and Benadryl prior to starting to prevent reactions.
Is that unusual practice or are your kids getting this and still hving severe reactions?
Sheryl

 

[Brian'sMom]

Sheryl, my son got Benedryl prior each time, and once they added steroids.

 

[jmckinley]

Hi
My son has had 3 Remicade tx. Each time they give him solumedrol and Benadryl prior to starting to prevent reactions.
Is that unusual practice or are your kids getting this and still hving severe reactions?
Sheryl

Ryan received all of these as well. Also, at the last infusion they even gave him an IV dose of solumedrol before the remicade. It slowed the reaction, but it still happened about 30 minutes into the treatment (just about the time the nurse came in and said "looks like we're in the clear!").

 

[my little penguin]

DS just had Benadryl but will probably add steriods next infusion to try and prevent/lessen a rxn.
He does take steriods and Benadryl prior to contrast dye

 

[LJS]

I'm so sorry to hear about DS's reaction Zinnia.. and so happy that you were there, noticed and made sure he was ok.. this stuff sucks, does't it?