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Crohn's Disease Forum » Parents of Kids with IBD » Lucy has had a bad reaction to infliximab


 
02-15-2013, 09:24 AM   #1
polly13
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Lucy has had a bad reaction to infliximab

My husband took Lucy for her infusion today a few minutes into it she had a bad reaction she went bright red vomited and had a nosebleed. The infusion was stopped imeadiately and she is ok now. They are waiting for the consultant to come and review her. I am two hours away, really worried now. Has this happened to anybody else's little ones thanks polly
02-15-2013, 09:29 AM   #2
Clash
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I don't have any experience with the reaction but wanted to send hugs and support!
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02-15-2013, 09:44 AM   #3
kiny
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It's called anaphylaxis, it's when your body has produced immunoglobulin against the infliximab and the reaction from the immune system can be very severe and dangerous, in most cases immediate pulling of the IV and specific medication if needed will stop the reaction, if not handled properly it can result in death in very severe cases so they need to be fast.

The reason people need to take care of each other when they are given infliximab is because during the reaction the airways tend to be blocked because of shock and people will have difficulty calling for help. I have seen it happen a few times in people in a hospital, usually bright red, difficulty breathing, but in the two cases I saw it, both were ok because they acted fast.

Frankly the reaction is often the fault of the hospital, they need to keep a very tight eye on IgE against infliximab, if it gets too high people should no longer receive it, but sometimes they give it anyway and that's when people get anaphylaxis. Each time infliximab is given people should be tested for infliximab immunoglobulin because the body treats infliximab as an intruder and starts to make anitbodies against it, there's a specific treshold they should not pass, if you pass it you get anaphylaxis. This is also the reason you can not stop infliximab and restart it, the chance of reaction is very high if you restart infliximab because the amount of antibodies will be very high and they remain high long after infliximab is discontinued.

Lucky she's ok.
02-15-2013, 09:56 AM   #4
polly13
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Thanks she is ok now they are running it through at half speed now and monitoring her vitals every 10 mins so hopefully she will still be able to get it
02-15-2013, 10:06 AM   #5
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((((Hugs)))) mom, I know it must be hard for you not to be able to be there with her but I am sure your hubby and the staff there are taking good care of her. Keep us updated on how she is doing. Hoping she is able to finish up her treatment and come home.
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02-15-2013, 10:10 AM   #6
kiny
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Make sure they test her IgE (IgM too) against infliximab and tell you how high the danger is so you can make any assesments with the right info.

I remember a few months ago there was a representative from a simple infusion unit not linked to a hospital promoting giving infliximab in the unit or at home instead of in a hospital, which is why I so strongly disagreed with her. Anaphylaxis is still the number one reason of deaths directly attributed to infliximab and it can go wrong really fast, which is why you need to be in a hospital.
02-15-2013, 10:40 AM   #7
Tesscorm
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Kiny,

When you say they should test IgE and IgM, when is this test done... immediately preceding the injection (and they get immediate results)??

My son will be starting remicade soon so this is all new to me... his GI said that bloodwork would be done at every infusion so, would the IgE and IgM be tested at this time and the information reviewed before the 'next' infusion??

Thanks


Polly - am so glad Lucy is okay! and hope it continues with no more problems!!
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02-15-2013, 11:09 AM   #8
Brian'sMom
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I think the test for antibodies is done if there is a reaction. Our GI said not always does a reaction mean antibodies.

Polly, So sorry you all had to have this happen! But feel reassured the infusion center knows how to deal with this. My son had bright red face and trouble breathing. They tried that same day also to slow it down...but then he got a rash. They still tried again 3 days later with steroids, but still had issues. That day they put a thing on his finger to monitor his oxygen levels...we knew by that thing way before he had much breathing problems again. The doctors really want to make sure they can't receive the Remicade before they just give up on it because its a good biologic for crohns. Doctors wouldn't keep trying it after a reaction if there wasn't kids that can still get it...at a slower pace or combined with steroids. How many doses has she had?
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02-15-2013, 11:21 AM   #9
kiny
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Kiny,

When you say they should test IgE and IgM, when is this test done... immediately preceding the injection (and they get immediate results)??
It's tested in blood in the lab after the infusion here, the test isn't that hard but it's not something you can let people wait on, so the decision is made between the infusions after they checked the antibodies, if there are extremely high antibodies they can decide to stop giving infliximab, IgE and IgM against infliximab are very good predictors of an adverse reaction.

What happens in the immune system is that after the first infusion your body's adaptive immune system starts to understand infliximab as an antigen, in most people after the first infusion the body starts making circulating antibodies and it makes memory lymphocytes that remember what infliximab is.

Most people who have been on infliximab a few times have antibodies, but to determine if there's a danger they test how high they are, at least they do here, and they should do it everywhere, since it's an extremely reliable way to predict anaphylaxis. There's no excuse not to test it, the cost of testing for antibodies against infliximab pales in comparison to the cost of the actual infusion, and it greatly increases safety.
02-15-2013, 11:23 AM   #10
polly13
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This is her third one. Hubby is happy with her now said the hospital were great knew exactly what the were doing and dealt with it in seconds - thanks god. We decided after the first infusion that we would take turns bringing her cause we both work and have two other to organise at home and the hospital is over two hours away - somehow after today I think both of us will be attending. Poor dh he got an awful fright
02-15-2013, 11:27 AM   #11
Jmrogers4
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So glad she is okay
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02-15-2013, 12:13 PM   #12
my little penguin
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Sorry about the reaction.
The reaction to a drug like remicade is anaphylatiod in nature not anaphylactic in nature.
Same type of stuff happens but not IgE mediated.
At work so I will post from home to night.
Prometheus labs in the US tests for antibodies and trough levels .
This used to be able to be done at the clinic prior to an infusion ( results a week later)
But now the Prometheus lAb requires it to be drawn by their own team in the patients home.
Antibodies will not be present if there is any remicade left in the system of the patient .
Antibodies did not predict with a high level of confidence who would and would not have a reaction.

The rate of the infusion is key - not too slow and not too fast.
Also the pre med "cocktail"
Most use Tylenol and Benadryl only to add steriods prior if necessary .

DS had a reaction last week so go wants to discuss changing his pre meds to see if that would help.

Article on biologics
http://www.advancesinibd.com/assets/...gics_print.pdf

Article on antibody levels

http://www.practicalgastro.com/pdf/O...ttiArticle.pdf

Infusion reactions appear in 3-22% of patients with psoriasis who are treated with infliximab;[7] in placebo arms this is approximately 0-2%.[3,4] The reactions can be subdivided into mild, moderate or severe reactions. Most reactions are mild or moderate and only few are severe.[3] The severity of infusion reactions is assigned by the physician based on the patient's signs and symptoms; however, they do not always fit neatly into the definition of mild, moderate or severe reactions.[6] Mild reactions can be defined as reactions that are self-limiting and resolve spontaneously after temporary cessation of the infusion or reduction of the infusion speed. Moderate reactions are those that require closer attention and an extended observation period and often discontinuation of the infusion. Serious reactions involve respiratory symptoms or a symptomatic blood pressure drop and need for close monitoring, often for 24h and occasionally requiring hospital admission.[9] A severe infusion reaction can be anaphylactic or anaphylactoid and should be treated as such (Fig. 1). In these cases infliximab should be stopped immediately.[5]
From:
http://www.medscape.com/viewarticle/580215
02-15-2013, 09:43 PM   #13
my little penguin
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Some authors argue that there are several observations that indicate that most anaphylactic-like reactions to infliximab are not true type I hypersensitivity reactions.[5,6,18,19] First of all, symptoms of an acute infusion reaction often disappear after diminishing the infusion rate, which does not fit with an IgE-mediated reaction. Secondly, in a cohort of 20 patients, normal serum tryptase levels were found after an acute anaphylactic-like reaction, which is inconsistent with an IgE-mediated reaction.[6] Thirdly, for an anaphylactic reaction previous antigen exposure is needed; acute anaphylactic-like infusion reactions, however, have also been described during first infusions.[6,13,19] In the cases mentioned, reactions are more likely to be anaphylactoid than anaphylactic. Anaphylactoid reactions are acute systemic reactions that cannot be distinguished clinically from anaphylactic reactions, but are not IgE mediated. It is assumed that these reactions are a result of direct degranulation and activation of mast cells caused by the involved drug itself. Similarly to anaphylactic reactions, anaphylactoid reactions are serious and potentially life threatening.[10]



An acute infusion reaction to infliximab is often accompanied by symptoms suggestive of an anaphylactic reaction, and several anaphylactic reactions to infliximab have been described in the literature.[11-16] However, IgE antibodies were only demonstrated in one case,[17] and in the other cases proof of IgE mediation was lacking

Both from:
http://www.medscape.com/viewarticle/580215_2
02-15-2013, 10:00 PM   #14
my little penguin
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Kiny
I understand IgE reactions very well.
I am not saying not to test for antibodies or even skin prick test with the remicade itself .
Do whatever test you can get them to do .

I was simple stating they currently do not believe it is purely IgE mediated so even if the test is negative it does not provide a very good indication that the person will not have a reaction the next time.
Many patients react the first time they are infused with remicade .
Other patients react even though they test negative to antibodies.
Having one reaction to remicade typically means you will have future reactions even with precautionary premeds ( antihistamines and steriods).
The body still reacts it just is a matter if whether the pre meds did enough to keep it from becoming severe and life threatening.
No amount of testing can predict the severity.

Even in IgE mediated reactions you can have a very high IgE number to an allergen ( ie shellfish ) but only get a few hives.
Someone else can have a barely positive IgE level and go into anaphylaxis including breathing trouble, blood pressure drop etc...

The other thing to remember is past reactions
Are not predictive of future reactions .
You may only get a rash / hives every time you are exposed to a drug /pollen or food for years then the next exposure throat swelling.

So get all the tests
Discuss the risks as your doctor sees them for you based on your child medical history and then decide how to proceed.
02-17-2013, 09:13 AM   #15
AZMOM
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Polly - when's the next infusion? Praying for Lucy!!

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02-17-2013, 05:10 PM   #16
polly13
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Next infusion is 9th April - all well since and she's got a great energy burst from the infusion - praying the reaction was isolated
02-17-2013, 05:13 PM   #17
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I'm glad she perked up. Yes I'll be praying!!!!

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02-17-2013, 05:19 PM   #18
my little penguin
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Woohoo for energy burst.

Wishing you the best on Apr 9
DS had a mild rxn at his last infusion
His next one is mar 18th
I will let you know what the Gi says about it since we have an appt before his next infusion.
02-17-2013, 06:23 PM   #19
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Poor little thing! Praying too that it was an isolated reaction, so glad she's perked up!!
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02-17-2013, 06:29 PM   #20
polly13
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Woohoo for energy burst.

Wishing you the best on Apr 9
DS had a mild rxn at his last infusion
His next one is mar 18th
I will let you know what the Gi says about it since we have an appt before his next infusion.
That would be great hope your meet goes well
02-17-2013, 06:32 PM   #21
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Praying it was isolated. Make sure you discuss premedication with the doctors. For us that did help for a while until my daughter had such a severe reaction they decided it was too dangerous for her to continue with it.
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02-18-2013, 03:07 PM   #22
Brian'sMom
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Polly, I would think if the Remicade is giving your daughter an energy burst and she's feeling good- It's working and doing its job! I'll bet it was isolated or they'll have to tweak here or there. A friend of ours is related to the Remicade Rep in our area and this rep has UC and has been on Remicade for 5+ years. I talked to him after Brian's reaction. He said that slowing down the infusion fixes things for many! I'll be sending lots of hugs and prayers on April 9th
03-29-2013, 04:59 AM   #23
polly13
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Just coming back in to give an update. Lucy was doing really well after the last infusion but things have started to go south in the last couple of weeks. We have had to take her to the ED twice in hte last month with very high temperatures resulting from Viral infections, she now has a uti and a chest infection - am a little concerned with the next infusion only just over a week away. To make things worse her crohns symptoms are back with a vengence, the one fissure that I could see was starting to close up and lose the red appearance, this has now opened up again and looks extremely sore, the screaming had stopped when she was going to the toilet and slowly but surely over the last week or so it has returned and she looks so miserable all the time and has hardly got off the couch in the last week. I had hoped that after three infusions we wouldn't be here. This coupled with the reaction to the last infusion i am worried now that the infliximab wont work and we are running out of options fast. Anybody take more than three infusions for infliximab to have lasting effects.
Thanks Polly
03-29-2013, 07:44 AM   #24
my little penguin
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Hugs
Sorry to hear she isn't doing well.
DS is having similar issues after his rxn.
He had another rxn after his latest infusion so he may be done with remi.
What has her Gi said?
03-29-2013, 08:29 AM   #25
Brian'sMom
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We had similar thing happen when we started Remicade. After 1st infusion...great results. After 2nd the crohns symptoms came back. We had abscess and viruses...By third the allergic reaction. Our GI said that because he responded so well after 1st that meant the anti tnf was what he needed...just his body didn't like the Remicade. Switched to Humira and had success for almost 2 years...still working ok but adding Methotrexate this weekend to 'enhance' the tnf drug. Maybe this helps? I hope so. Sending hugs
03-29-2013, 10:50 AM   #26
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Sorry i cant answer your question, as we are behind you, just had 2nd shot of infliximab, 3rd due in 3 weeks. Didnt want to read and run!

After my sons 1st infusion, which went well without any problems, nice and steady and 15 mins obs throughout the time we spent in hospital, even the time after the infusion, however no change in the first week in him, 2nd infusion found he had gained 2kg in the 2 weeks, so really pleased, hasnt grown but early days, once again infusion gone on well and all obs done without problems every 15 mins. This time he has picked up and is busy painting lego star wars figures and filming them for you-tube!! However we had a phone call in the evening of the infusion from his nurse asking him to stop taking azathioprine asap, as it is doing to good a job!! Blood test Tuesday to see how things are going, so will wait and see what they reveal!

Fingers crossed feeling better soon and out of pain, and the hospital have all the answers for you. We have been advised it takes an average of 6 months to get the real benefit of infliximab, so we are crossing our fingers, also crossed for you x
04-01-2013, 04:33 PM   #27
Brian'sMom
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Polly, How are things this week? You still have options if Remicade isn't the one.
04-01-2013, 04:41 PM   #28
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Sorry I missed this.
I'm so sorry to hear all this.
Grace I send our love.
04-02-2013, 07:55 AM   #29
polly13
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Thanks all overall she is better this in sofar as her viral thing seems to be gone but the crohns symptoms are still fairly bad, couldn't get the GI nurse last week so have called her this am and am waiting a call back - to top it all of she was inadvertently exposed to chicken pox last week as well so I am in a panic about that now eventhough she has had them - does the worry ever stop farm wife how is grace
04-02-2013, 09:33 AM   #30
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Pleased to hear she is making progress, the crohns symptons do seem to take a while to clear up, fingers crossed they do soon.

Just read about being exposed to chicken pox last week! Just wanted to say that my son (14) had chicken pox, some years ago, then just before christmas developed a rash, got him checked out after thinking he had been bitten by something, and turned out to be shingles!! Have to admit i felt like a bad parent, just didnt give it a thought at all. He felt really miserable, crohns symptons worse, and we had been to hospital just before they came out!!

They appear in clusters, areas such as shoulders, back, chest, torso in general.

I dont want to worry you but just wanted to pass the info on to you. Once he was diagnosed, we had to stop his azathioprine while he took 10 day course of medication, then restarted azathioprine, they also did blood work just as precautionary i believe to check everything out.

Have to admit i dont think the worry will ever stop! Seem to be on guard all the time, watching and waiting! Sadly alot of people dont understand what we as parents are going through, and therefore this group is fab for questions/answers and in general talking about anything and everything.

Really hope she feels better really soon and you get the call back soon you are waiting for x
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