Crohn's Disease Forum » Parents of Kids with IBD » Humira after allergic reaction to Remicade

12-04-2018, 02:55 PM   #1
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cassimw's Avatar
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Location: Fairfax, Virginia

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Humira after allergic reaction to Remicade

I help run a parent of kids with IBD support group in Northern VA, and this post is actually for a friend in the group.

Her son is 11 and was diagnosed at a young age. He was mostly asymptomatic for about 5 years, and then had a terrible flare that sent him to the hospital and led them to start Remicade. It's been working well for him for just over a year. But at his last infusion, he had an allergic reaction (trouble breathing & dizziness) and his doctor wants to stop Remicade and start Humira.

Has anyone had this experience? She has some concerns:

* Can one have a similar allergic reaction to Humira?
* Are you more likely to have a reaction to Humira if you did with Remicade?
* Is it hard to get insurance to cover it?
* She feels there is more history/data about kids and Remicade vs. kids and Humira and it makes her nervous

Please let me know your experience and I'll pass it along!

ps - My almost 18 year old has CD and has been on Remicade for almost 3 years and is doing well (knock on wood), but I live in constant fear of this happening to her. I hope all of your kids are doing well!
12-04-2018, 07:04 PM   #2
my little penguin
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Join Date: Apr 2012

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Ds started remicade at age 8
And had two allergic reactions by age 9 to remicade
(Neither affected breathing but second one was worse even with pre treatment of steriods )
Started humira at age 9 and stayed on it until he was 13(almost 14)
Humira is used a lot in kids with JiA (even little little kids age 4 and up )
Many years experience there as an effective and safe drug

Remicade is murine protein based (mouse) and has a high allergic reaction rate because of this
Humira is humanized protein so the risk of reaction is much lower
Be aware injection site reactions (hive /welt where the shot was given ) are quite common and considered a local reaction
Theses are not indicative of a systemic reaction
Ds had a few injection site reactions but never a systemic reaction to humira
We had to stop it for 6-8 weeks due to surgery (not Crohns related )
And when he restarted it wasn’t effective anymore
But no reaction.

He currently has been on Stelara for a year
Aslo humanized protein
No reaction

He did have anaphylaxis (allergic reaction with more than two systems. - breathing , hive6,nausea ) to kineret ( E. coli protein based biologic)

Good luck
DS - -Crohn's -Stelara -mtx
12-05-2018, 12:13 PM   #3
Jmrogers4's Avatar
Join Date: Jun 2012
Location: Boise, Idaho

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I think MLP already told you there is less chance of reaction with humira due to the proteins used in manufacturing.
There are obviously pros and cons of both and when something is working we don't want to change but sometimes when remicade doesn't work humira does.
My son is on remicade and has been for 5 years and while I hope it keeps working for a long time realistically I'm when it stops not if, we'll move to humira. There are times we've wondered about switching now just logistically it might be easier since he is back and forth between college and home but I don't want to rock the boat. He will actually drive 3 1/2 hours back to school during Christmas break to get his infusion and home the next day, it's too much of a hastle to switch for one infusion. We do switch back to here when he comes home in the summer. I know of another parent whose son is flying home for infusions while he is at his first year in college (had some insurance issues and her son has been on it for 5 years also and in remission so not wanting to again rock the boat).

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-05-2018, 01:51 PM   #4
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Join Date: Mar 2012
Location: California

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JM - have you thought of a home infusion for the times that your boy is home for just one infusion? Also, your friend can have her son stay at school and do home infusion there. We are doing this with O for Christmas break. Admittedly it is easier for us since we already have a home infusion provider and nurse for T but might be something to look into.

Answering the original question, I have known quite a few people who had to stop Remade for various reasons and for whom Humira worked great. It has been around a while and has a pretty good history.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
12-05-2018, 07:16 PM   #5
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Maya142's Avatar
In the Juvenile Arthritis world, they use Humira MUCH more often that Remicade. In fact, there are studies on kids (as young as two years old) with JIA on Humira. Humira is used on younger kids all the time. I don't know if it will make her feel better but she could go on to PubMed and look at the studies done on kids on Humira - there are LOTS. For JIA, for pediatric Crohn's and Ulcerative Colitis, for kids with uveitis and so on.

So I would not worry about how much it is studied in kids - the answer is a LOT .

In terms of the reaction, there are lots of kids who have reactions to Remicade who do fine. It's much less likely with Humira, which is humanized protein vs. Remicade which is murine (mouse protein). I can think of several kids on the forum who had reactions to Remicade and did fine with Humira.
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-06-2018, 04:03 PM   #6
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Location: Tipperary, Ireland

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Hi there Lucy started with remicade when she was 4 had in total 4 infusions had allergic reactions on infusion 3 and 4 - she switched to humira at that point - she is still on it 6 years later and has never had a bad reaction.

Crohn's Disease Forum » Parents of Kids with IBD » Humira after allergic reaction to Remicade
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