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Chest Pains as a Reaction to Remicade?

Maya142

Moderator
Staff member
Yes, could be. I have heard of a kiddo who had a mild reaction which included chest pain and tightening during the infusion. She was pre-treated with Benadryl and Solumedrol and was able to continue Remicade for a couple years, and then she had a more extreme reaction and was put on Humira.

Did your daughter have chest pain during the infusion or after? Does her GI/rheumatologist know?

I'll tag my little penguin
 
During the infusion.
She's already pretreated but might have to up it now.
They said to give more Benadryl before bed.
If it comes back we're to go to the er.
 
Last night her whole body was hit with an arthritis flare (knees, ankles, back, hips, sternum)
Her reaction at remicade was chest pain that still present today. It's her sternum area. I'm wondering if the reaction was a systemic reaction that set off her jia because of remicade ?

Does that even make sense:shifty:
Remember, I'm sleep deprived and waiting for docs to call me back:eek:
 

Tesscorm

Moderator
Staff member
That's sounds awful! I hope some of those areas have settled.

I don't know about a connection to remicade but S had ongoing chest pain and tightness a couple of years ago. We never noticed a connection to infusions?? While we never figured out what his pain/tightness was (after many months, tests, and visits to rheumatologist and cardiologist, it eventually just went away on its own??), one thing that was considered was costochondritis (inflammation of the sternum).

Perhaps the infusion was coincidental and it was more an arthritis flare that started at the sternum?? But, I'm not very informed re JIA, so not sure if a flare can 'spread'.
 
I believe "just chest pains" is a reaction to the Remicade and if they draw blood have them run an antiibody test to see if that is the cause of the pain.
keep us posted.
 

my little penguin

Moderator
Staff member
What did the docs say ?
Systemic reaction involves more than TWO systems and is considered anaphylaxis
So if she had hives (skin) and breathing (respiratory)
Two systems

Or vomiting (GI)

Chest pain (heart rate issues or where the muscles /tendons connect to the ribs ?)
Chest pain muscles etc is common in JIA
Ds gets it and it’s hard to tell that versus asthma chest pain at first

Is it tight ?? Feeling like an elephant sitting on her chest making it harder to breath
Or just hurts her ribs when she breaths in or out ?
Or sharp (heart) chest pain ?

But if that the only symptoms
Highly unlikely to be systemic
Needs TWO systems

Let us know
Hugs
 

Maya142

Moderator
Staff member
It sounds like Remicade may not be working for her if she is flaring even after her infusion. Poor kiddo. If the pain in so many joints lasts past today, I would definitely tell her rheumatologist.

Are you seeing swollen/warm/red/stiff joints or just pain?

She is on infusions every two weeks, right? At the maximum dose?

So really if it's not working, she needs a new biologic.
 
Still waiting to hear back from the rheumatologist.
Everything settled but if course she's tired.

Mlp, her sternum was the only issue. No breathing issues or other systems.

Tess, it could be coincidental but to never have that issue makes it a huge coincidence.

Maya, remicade every two weeks has been amazing but she still hadn't gotten near remission. I'm open to new drugs but the fear of flaring her is worrisome to say the least.


I'm more confused by her major flare 6-7 hours later. Lasted about 12 hours and then goes away.
 

Maya142

Moderator
Staff member
Have they checked for drug induced Lupus? That can cause increased joint pain. But that would stick around - it wouldn't disappear after a certain number of hours, as far as I know.

My daughters were always tired and achy the day after Remicade. But it wasn't severe pain, they were just achy and sore.
 
Just heard from the doc (only took 7 days). 🙄
He upped her Benadryl before infusion and
something else given with the remicade that starts with "s". No it didn't sound like saline solution. Unless it goes by a different name when it's hanging in the bag.
For the life of me I don't know what else they give her besides Benadryl, Tylenol and Remicade at the infusions?🤷

However😔
This is it. One more reaction and he wants to move on to something else.
 
Maybe solumedrol? I know a number of kids on here get that as a premed before infusions, especially if the doctor is worried about an allergic reaction.

Really hope that the new premeds help and she doesn't have any more reactions.
 

my little penguin

Moderator
Staff member
Solumedrol is coming iv steriod given at the next infusion. After a reaction
We did this with Ds and remicade
Reaction infusion
Next infusion Benadryl/solumedrol another reaction
Stopped remicade

Fingers crossed
 

Maya142

Moderator
Staff member
Same here - we did Solumedrol to prevent an allergic reaction the third time M was on Remicade. She never had a reaction but because she had been on Remicade twice before, they were worried.

The good was that M felt GREAT the day after the infusion. Really helped her joints, she was bouncing off the walls. Then it would wear off the day after which was hard for her to deal with.

I suppose, in a sense, it worked for her because she never had a reaction. But she also did not really benefit from Remicade the third time.

Her GI added Solumedrol when she seemed to have a reaction to Entyvio though (rash, swollen face). It turned out to be drug induced lupus and we had to stop the drug anyway.
 
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