Adverse reaction during Remicade Infusion

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Peanut75

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Have any of your children been on Remicade for a period of time, no allergic reaction? Then, out of no where, during a treatment, they experienced an anaphylactic episode? Throat closing up, unable to talk, rapid heart rate, feels like body is on fire, severe stomach cramps, nausea, flushed?

My daughter has been on Remicade for over 2 years and never had a problem.

Six weeks ago she had a mild reaction- wasn’t terrible and after steroids and Benadryl were given, infusion resumed. Today, pre meds were administered, however, after 13 minutes of medication, she experienced an anaphylactic episode again but this time it was worse. Rapid response team was called and meds were given.

Have your kids ever experienced this type of reaction ? What was the outcome? Did the dr switch meds or increased pre- med drugs? Any feedback is appreciated .
 
Reacting to remicade is extremely common.
My kiddo did and I know of at least two other children did
Same as your child
Mine was on remicade for 8 months
Had a minor reaction
They decided to premed with Benadryl and iv solumedrol
Next infusion another reaction
He continued with tongue tingling for days
The derm said she could see the reaction on his tongue
Brain mri was done to make sure no cns from tongue tingling (which did stop eventually)
Mri was clear
Ds was switched to humira with no issues
He took humira for 5 years till it just stopped working .
He is currently on Stelara plus mtx which he has been on for almost 6 years .

the important thing is your child is ok now
And most don’t react to humira when switch

remicade is a murine based protein (mouse )
Humira is a humanized protein so less likely to build antibodies for allergic reaction.

they do NOT give remicade after anaphylaxis.
The odds of stopping the reaction in time the next time are not good even with rescue meds such as epi pen ,steriod and Benadryl on board .

think of anaphylaxis like labor
Once your body has gone through it once
It knows what to do the next time only faster

my child is a extremely allergic kiddo so multiple drug ,food , animal ,pollen you name allergies including anaphylactic reactions to multiple things with epi pen always in him

no more remicade period
Too risky
 
Thank you for telling your story and advice. It was a scary day for us but glad she’s alright.
Our dr is out of town for another week but hope to have some answers from the partner on Monday.
We also see a second Dr out of state and will send him an email tomorrow.
We’ve been successful on Remicade which makes it scary to switch to another biologic, yet after two episodes, I wouldn’t want my daughter to go through this again.
 
My daughter has never had an anaphylactic reaction. She's gotten a mild, itchy rash during a Remicade infusion but really that's all. She's just pre-medicated with Benadryl and Tylenol and that has worked, thankfully.

Generally, after an anaphylactic reaction, you would have to switch medications. I know it's scary to switch meds, but it's much safer. Like MLP said above, Humira is a humanized protein, whereas Remicade is murine (mouse protein), so it's MUCH less likely to have an allergic reaction to Humira. Actually, in the 10 years I've been on this forum, I can't think of a single kid who had a reaction to Remicade and then also had a reaction to Humira.

However, I can think of several kids who had reactions to Remicade and then went on to do really well on Humira though!

Humira tends to be very well tolerated. Also, just as a head's up, if you happen to search old posts and see that kids find the shot very painful that was know they removed the preservative from Humira (it used to have citric acid/citrate in it, which caused the med to really burn when injected). Now most kids say the shot is pretty painless.

Since she was responding well to Remicade, then another anti-TNF like Humira should work well. But of course, you could try other biologics with different mechanisms of actions - such as Stelara or Skyrizi (which block IL12/23 and IL23 respectively).
 
@ Maya -Thanks for your input. I appreciate everyone’s comments / knowledge. We originally had a choice between Remicade or Humira and we chose iv versus self injection due to my daughter’s fear of weekly injections.
We have been blessed with a wonderful pediatric clinic for infusions.
I will let you all know what transpires and the next step of a medication.
 
My daughters started the really painful Humira shot at 13 and 15. Both did their own injections after the first couple shots.
A few things we did that helped -

Icing for a good 20 minutes before the shot and then after the shot

Doing the shot (we used the auto-injector/pen
and not the prefilled syringe) while watching something so they were distracted

Dessert after the shot!!

You can also try Buzzy - some kids think it really helps. We didn’t use it for Humira (I think…it was a while ago) but we’ve used it for other shots and actually my husband (who has the same type of autoimmune arthritis as my daughters) absolutely refuses to do a shot without Buzzy and ice.

I also wanted to add that there are some kids who prefer the pen because you can’t see the needle (but it does make a loud click when you press it which startles some kids - my daughters did not mind that at all) and there are some who prefer the prefilled syringe because you can control the speed of the injection.

My older daughter switched to the prefilled syringe for a while and liked it but now always uses the pens for convenience.

In contrast, my younger daughter once tried the prefilled syringe when insurance accidentally sent us that and she absolutely hated it. Said it prolonged the injection and the pain with the injection. She has been on like 9 biologics now (she has both severe arthritis and Crohn’s so it’s been hard finding something that works for both) and has always used the pen.

Humira is generally every 2 weeks unless you need to increase the frequency to every week (and I won’t lie - that does happen).

My daughters loved infusions but as they got older they found that injections were so much more convenient! 15 seconds or less and you’re done!
 
My daughter has a group of friends who take Humira and they prefer the pen. I’ll keep you all posted on what the doctor recommends.
 
Did they actually complete her Remicade infusion or did they stop it 13 minutes in after the anaphylaxis?

Because if she didn’t get her Remicade, I would try and get in touch with your GI ASAP. Simply because it’s very possible she will flare if you don’t get her on another medication soon.

My daughter is on 10 mg/kg of Remicade every 4 weeks and insurance arbitrarily denied her Remicade in December. It took several appeals and 3 peer to peer reviews before they approved it. So she got her infusion at 7 weeks instead of 4 weeks.

At that point, her IBD was really flaring and her CRP and Fecal Calprotectin were elevated, and her arthritis was flaring too and she ended up needing IV steroids. It has taken several months to get back to the place she was at before insurance denied and delayed her Remicade.

I don’t know if I’m remembering correctly but I think I remember that your daughter was struggling with severe pain (amplified pain?) in addition to her IBD. I would hate for her to flare and for that pain to come back.
 
The infusion stopped @ the 13 minute mark. Awaiting results from Prometheus labs before a decision is made- should receive results today or tomorrow.
I agree- we need to move fast so we don’t experience a flare.
We were at 5 mg/kg every 6 weeks but in March moved to 10 mg/kg.
Yes- functional abdominal pain. We’ve been through the IB Stim journey and see an abdominal pain Dr out of state. It’s been a stressful few years.
 
Just beware
We were told although Prometheus tests for remicade antibodies
It only tests for a few versions of known antibodies
Per my kiddos specialist known reaction over rules antibody testing
And future administration of the drug is way too risky for anaphylactic shock (meaning they can’t stop it and death is a result )
You can have a reaction and still test negative on the antibody test
Because they don’t test for every antibody
My kiddo was negative
But clearly had physical signs the specialists could “see “ so there was no doubt about the anaphylaxis
 
Thanks for the heads up. Obviously, this has been a stressful week and trying to beat the clock by coming up with a plan with her doctor out of the country.
I’ve been in contact with our consulting doctor out of state and awaiting his suggestions.
I’ll let you know what is decided.
 
Yes, we were also told you can lose response to a drug without antibodies and you can also react and have a serious reaction without having antibodies.
I hope the GI gets back to you quickly with a plan.
You can always ask to do EEN while waiting. Do you think your daughter would be willing to do that? Many doctors now allow 80-90% formula and some food, which makes it easier.
 
Unfortunately,
My kid will not do EEN. To top it off, she came down with a cold this morning.
Still waiting for a plan… clock is ticking .
 
Remind me, where is her disease primarily?

If she absolutely refuses EEN (my teen did too, though she ended up doing it as a young adult), then perhaps steroids are your best bet if she begins to flare. If her TI is the main issue, then you can sometimes get away with Entocort.

Can I ask, simply because my daughter struggles with severe chronic pain (though hers is in her joints and not her gut due to her severe arthritis), what is IB stim? Is it an implanted nerve stimulator? Whatever it is, is it helping her pain?
 
Hopefully, we can avoid steroids. I heard from our consulting Dr out of state as well as our GI’s partner . Both discussed Humira and Entyvio.
Humira will probably be the easiest to get a stat through insurance but no one wants to make decisions until labs come back.
IB Stim is a device that is placed behind the ear. It’s similar to an acupuncture approach. It send signals to assist with the brain gut connection.
It is replaced every week for 4 weeks.
It was successful but feel like we need a “ reboot.” Our doctor in-state does not do it, typically, the bigger pain and ibd centers do it so we would have to travel out of state again - 4 weeks in a row.
This is the description of the device from the website …”The IB-Stim is a non-surgical device that works by sending gentle electrical impulses into cranial nerve bundles located in the ear. This stimulation targets brain areas involved in processing pain and aids in the reduction of functional abdominal pain associated with Irritable Bowel Syndrome.”
 
Where is her IBD located? Just because small bowel Crohn’s typically does not respond well to Entyvio. Also, Entyvio can take over 6 months to work, so you’re going to need a “bridge” treatment and that is typically EEN or steroids.

My daughter briefly tried Entyvio and the really nice part about it is that the infusions are really short compared to Remicade!!

The IB stim is interesting. My daughter has tried acupuncture twice without any results. She occasionally uses her TENS unit which helps a little. The thing that’s worked best for her for chronic pain is a pediatric pain rehab program and after that, regular exercise.
 
Thanks for all of the advice. My daughter’s ibd is in fact located in her terminal ileum.
I was told that Entyvio could take up to 6 months to work.

My daughter refuses acupuncture. I even offered for her to watch me get it but it was a hard”no.”
She is currently trying hypnotherapy.
We have a TENS unit but I used it more than she does !
We considered an in patient pain program but would have to travel out of state - that’s how we came across the out patient pain program.
Now that it’s summer, swimming is a daily activity.
And trying to transition her back to a school campus.
 
Just anecdotal info here, but... My daughter also had Crohn's that was mostly active in her terminal ileum. After 6 years on Remicade, she was slowly losing response even with dose increases. She was switched to Entyvio and it never helped her at all--things just got progessively worse. After 6 months, she had terrible Crohn's symptoms and developed painful erythema nodosum for the first time. Even adding prednisone *and* EEN for months didn't help. An Entyvio dose increase didn't help. She finally had surgery to remove her terminal ileum and that relieved all her symptoms and she was able to stop the steroids and EEN. She's been on Stelara for 8 months since then but calprotectin and symptoms are slowly creeping back up. Trying to decide now if she needs a dose increase or another med.

If Remicade was working for your daughter except for the reaction, I would lean towards trying Humira, since it's also an anti-TNF but is less likely to cause an allergic reaction. My daughter also hates shots, but the Buzzy helps make them tolerable for her. She still complains about the shot every time, but it's over quickly and quickly forgotten.
 
I am going to tag another parent who has a lot more experience that I do with Entyvio @crohnsinct. But we were told Entyvio by our GI (actually both pediatric and now my daughter’s adult GI) really works best for colonic disease and does not work well for small bowel disease at all.

My daughter was put on Entyvio when she was found to have active disease in her terminal ileum and cecum but it wasn’t her GI’s first choice and she actually had a very rare complication with it (drug induced lupus) but that could have been because she was also on a second biologic for her arthritis. However, she was taken off Entyvio and stayed on the arthritis biologic and her GI added an anti-TNF, Cimzia and she did very well on that combination for her IBD (went into remission!) and for a while, even for her severe arthritis.

The only reason we even tried Entyvio was because it was less immunosuppressive and back then (this was 6 years ago), using two biologics was very, VERY unusual and her GI wanted to try a less immunosuppressive option first, though she was quite concerned it wouldn’t work. My daughter had already been on and failed Humira and Remicade multiple times at that point, which is why we chose Cimzia. She never had any infection issues with Cimzia plus the IL17 inhibitor for her arthritis. Her IBD has always responded very well to anti-TNFs, but they did not do enough for her arthritis (which is much worse than her IBD).

Considering your daughter was responding well to Remicade, my first choice would be Humira if it were my child. If not Humira, then Skyrizi or Stelara are both said to work better for small bowel disease.

There are lots of tips and tricks to deal with injections and if your daughter is very anxious, seeing a psychologist should help.

If you do end up on Humira, the one thing I’d say is that you should try to get the brand name Humira and not the biosimilar Amjevita. The biosimilar does not contain citrate but does contain another preservative - acetic acid/ acetate and that stings when injected. Of course it depends on what your insurance will cover. My daughter happens to be on a second biologic for her arthritis that contains acetic acid/acetate as a preservative and she says it stings when injected. It doesn’t burn the way Humira with citrate did (she says that was MUCH more painful) but it does sting. She ices before and after the shot and still does the shot while watching something, so she’s distracted.

In terms of pain, I highly recommend either an inpatient pain program or an outpatient full day pain program (usually from 9am to 5 pm) if your daughter has been unable to go to school. Is the program you’re doing separate PT, OT and CBT or is it an integrated full day program? Please feel free to PM me - my daughter has struggled with this kind of chronic pain for nearly 10 years now and I REALLY wish we had done a pain program earlier. We tried outpatient PT and seeing a psychologist for years before finally doing an intensive inpatient pain program. College is a million times harder than high school so learning to cope with the pain and returning to school in high school is key. We did have to travel out of state for the program.
 
I second and third the trial of Humira over Entyvio. Entyvio does take 12 weeks (at least) to be effective and it definitely does work much better in the colon than in the small bowel. It also is less successful when used as the second or this drug down the line although IDK if this applies when switching drugs due to allergic reaction. Generally speaking the people who have better luck with Entyvio in the the small bowel are the primary non responders to anti tnf drugs. It makes sense. It isn't exactly a different inflammatory mechanism that they are targeting as it works on the tnf but it just works a different way. This would be my same reason for choosing Humira over Stelara or Skyrizi (assuming your pediatric doc could get it approved). She was responding to the anti tnf. She just built antibodies. So it makes sense to go with another anti tnf.

I am curious, what are they hoping these labs are going to tell them? Antibody levels? And did they happen to tell you if this level then we do this? And that level that?
 
My son's experience is similar to PDX's. Tried Remicade, results were not great and things got worse. Tried Entyvio, marginal results. Got a surgery removing the terminal ileum. Still had some inflammation a few months after surgery, so we started Stelara.

Stelara is working great and there are no signs of inflammation at all now.

If I were in the OP's situation, I would strongly advise going straight to Skyrizi (preferably) or Stelara (second choice). Entyvio would be my third choice, followed by Humira in fourth. Skyrizi has some great results in the studies.
 
We were able to get five years out of humira after the remicade allergic reaction for ds
Humira kept things stable and no real issues
Unfortunately you do need to factor insurance which wants shown failure of meds like humira first before approval of the pricier stuff like Stelara.
 
The usual insurance requirement is to fail one anti-TNF before a different biologic like Stelara or Entyvio.

In the studies, Skyrizi (which acts similarly to Stelara but more narrowly) seems to have even better efficacy than Stelara or anti-TNFs. Stelara and Entyvio have a better safety record than Humira.
 
That may be true, but I really think it depends on the insurance company. I know a mom whose teen has IBD, vasculitis, and JIA and they are having a terrible time getting insurance to approve Stelara more frequently than every 8 weeks. And anecdotally speaking, it seems like most kids seem to need Stelara every 4 weeks or at least every 6 weeks.

Her child is in the hospital for the 3rd time because insurance keeps denying Stelara even at every 6 weeks - even though they tested that child's Stelara levels at 6 weeks and found them to be 0, showing that he REALLY need Stelara every 4 weeks. They have doctors at NIH and a major pediatric IBD center fighting for Stelara every 4 weeks and insurance continues to deny it. And this is after failing both Remicade and Humira. Stelara is much more expensive than anti-TNFs.

Entyvio and Stelara are less immunosuppressive than anti-TNFs - that is true. But if an anti-TNF was working and the only issue was an allergic reaction to Remicade, then Humira is likely to work and more likely to get approved quickly. And in general, it's a very safe drug - there is a lot of data supporting that. For both my daughters, it worked like magic. No side effects at all.
 
Yeah that ^^^^^
Every time Stelara is up for prior authorization at every 4 weeks it’s always a nail bitter since unlike other meds the insurance has randomly decided once after years of approval that Ds could be “just as well “ on every 8 weeks and the doctors needed to hold the meds to prove he couldn’t function /flare after 4 weeks
 
So much info. Thanks everyone. I’m so fortunate to have found this group.
Results were received and I’m awaiting a call from the drs office.
 
Good luck with the humira
They now have 0.4 ml syringes and 0.8ml syringes
Same amount of drug but less to push in
Plus the pen
Pen makes a loud click noise
If you ever heard an epi pen
Not too bad

fingers crossed it’s approved soon
 
Seems like a sound choice.

O did the pen and she liked it.

July seems a little too soon for scopes. I would think they would want to give Humira a little chance to take hold but I didn't actually go to school or get a real degree 😂
 
Well, scopes were scheduled a few weeks ago for July since it would be a good time … summer, so maybe they would be changed now…..
Have any of your kids have an intestinal ultrasound?
 
Nope but they are all the rage in many centers these days. Neither of my kids have needed one yet because their inflammation was obvious with blood labs and calpro. Are they monitoring her cal pro?
 
Yes, I would also not expect Humira to have had a chance to work by then. With my girls, it took at least 3 months (though of course everyone is different).

My daughters have a friend who hates needles, though she’s been on Stelara for a while. It stopped working recently and she was given the choice of Remicade, Humira and Rinvoq (which is a daily pill but comes with more risks than anti-TNFs). After agonizing about it, she chose Humira (even though it’s a more frequent shot than Stelara, and more frequent than Remicade infusions) and chose the pen. She was shocked at how little it hurt!!
 
Hi All,
So, Humira was approved. Her first loading dose was last week. No adverse reaction. We will see if symptoms begin to improve in the coming months. Fingers crossed. Thank you for your advice and kind words. I appreciate your knowledge.
 
Hi!
I wanted to give you an update on my daughter Your insight is always so helpful.
We have a gi appointment in two weeks.

Here is some information since I last posted in June when my daughter had a bad reaction to Remicade, which resulted in the switch to Humira.

August
Calpro: 1000
Humira tolerated and drug levels look good.

October
Still significant pain.
Pill cam showed “ significant ulceration in distal area of ileum.”
Calpro 800
Mtx added, 15 mg, weekly

February
Cal protection 400
Humira drug levels are very good at 19.2. My daughter still has significant pain. The worst is throughout her sleep and when she wakes up in the morning. She has terrible sleep due to her abdominal pain. Dr recognizes that she has great drug level, but her calpro is still high, considering she has a good response to the medicine. Sed rate is good.

He suggested we open the discussion to change drugs, given no change in abdominal pain and high calpro.

Any advice is appreciated.
 
Is she on full adult dosing ?
40 mg ?
Every week or every other week ?
Since her levels are high might look at other non anti tnf drugs
How old is she ? Over 12 ?
Over 12 can get adult drugs approved typically like Stelara ?
Entyvio is more for the large intestine
Stelara for small intestine .
Both take a long time to be effective
Will she do een while you wait for approval /new drug to kick in ?
 
She does understand it’s either een or steriods until meds kick in .
Een can be done at night
Ng tube put in while she sleeps and removed when she gets up for school
Or metal water bottles (which stay cold ) in lunch box during lunch at school
Not ideal
But steriods cause moon face
Water weight
Acne etc that most teens hate
Stelara takes months to work
Other option would be to try humira at every week to see if that helps even though levels are high for fecal cal
But probably needs to switch to Some thing other than anti tnf
My kiddo started Stelara at 14 (now 20)
Took a while to get dosing he needed 90 mg every 4 weeks vs standard 90 mg every 8 weeks
I was ready to toss the med
But now it’s been good for 6 plus years
With mtx
 
Good luck teens are never easy especially with crohns .
Young adults -that is harder since they decide it ALL.
 
So I was thinking….. if we never reached remission with Remicade, even having good drug levels ( in the beginning) and currently in the same place ( good drug levels but still inflammation). Do you think another drug class should be considered? (Crohns in ileum).
 
I have to go back to look at the history, but her Remicade infusions were every 6 weeks, levels were around 10-15 the first year and a half.

Humira (with mtx) is currently at 19.2.

Even when on Remicade, her calpro had never been below 250.
 
It may be that she needs a different kind of drug, but I would try weekly Humira PLUS either steroids or EEN and give that a chance before switching. Simply because there have been cases of kids on here who need something to push them into remission, like steroids or EEN and then the drug is actually able to maintain it. Many kids on here with stubborn Crohn’s have had a lot of success with EEN. My daughter used an NG tube and honestly, I promise it’s not as intimidating as it sounds. She hated it the first two nights but within a week, she could insert it by herself in under 10 seconds and she declared she was NEVER drinking another shake again (she had tried supplemental EN to gain weight and EEN by drinking the shakes first and she just could not drink enough for it to work). The tube is thin and flexible and she inserted it every night and removed it every morning before school, so no one had to know. She was roughly your daughter’s age at the time, though at the children’s hospital we went to, they taught kids as young as 6 to insert their own tubes!

However, since she is a teenager, she does have to be onboard with it, otherwise it’s very easy for her to cheat and sneak food. Many hospitals and GIs now let kids do 10-15% food and 90/85% formula so that they can have one meal a day, which makes it easier on them. It works as well as 100% formula for most kids. EEN also helps with growth and weight gain and works better than steroids for healing the gut.

However, steroids are also very effective at inducing remission and sometimes can help you get over a flare and then a biologic can maintain remission. We’ve done steroids many times and yes, they do come with side effects but they also work.

I know her Humira levels are fine and therefore the doc may be saying switch vs. increase the dose, but all I can say is that before the levels tests existed, we went by symptoms and my daughter’s symptoms did not get better till she was on weekly Humira plus MTX for 6 months. After that, it worked like magic. Also, our rheumatologist and GI have said some kids just need higher levels than others (though I don’t know how high your daughter’s levels are because I can’t remember what the minimum level should be for Humira).

Your other options are Stelara or Skyrizi, both of which tend to take a long time to work, so you’ll need either steroids or EEN as a bridge until they kick in. They are both very good drugs and sometimes kids who have responded to anti-TNFs initially and then failed them or who haven’t responded enough, do very well on them.
 
The optimal therapeutic cut-off point of serum ADA levels ranges from 4.5–5 to 12 µg/mL, where ADA levels are associated with an adequate clinical monitoring of the disease during maintenance therapy. These ranges vary according to the target, suggesting levels of 4.8 µg/mL as the cut-off for clinical remission and levels ≥7.5 µg/mL for mucosal healing/endoscopic response. Controlled prospective studies are required to determine the optimal therapeutic interval of ADA serum levels both as induction and as maintenance therapy.
Click to expand...
https://karger.com/ddi/article/37/6/444/95078/Relationship-between-Serum-Adalimumab-Levels-and
19 is well above the minimum for therapeutic response. At 4.8
Or 7.5
 
Dr was pleased with the therapeutic response @ 19.2 Inflammation did go down by half but it is still high. We will re-evaluate in 3 months.
Pain continues at night and when she wakes up in the morning.
I questioned if it was possible she should be checked for h. pylori.
 

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