Infliximab not helping my son

[Clarej121]

Hi
I.m very new on here & gave my story..
It was just before my son Bailey was having his 3rd Infliximab infusion
How long untill he feels relief?
He spent a few days in our local hospital to help with his pain but that was a complete waste of time!!
He also has been saying the last week that his knees hurt..
Is this normal?
We are finding it really tough & cant stand watching him suffer anymore

Clare x

 

[Tesscorm]

Hi Clare,

Sorry that your son is not feeling relief yet from his medications. I'm sorry I can't offer any advice re the medications (my son has only used enteral nutrition therapy) but did your son's GI give any indication of when to expect results?

And, regarding the knee pain, unfortunately, it seems that there are many people with Crohn's who also suffer from joint pain. My son suffers from back pain and we are seeing a Rheumatologist in a couple of weeks but I'm actually not sure if its related to Crohn's or a past injury and his current hockey; his pain is more 'muscular' rather than 'joint'. He doesn't take pain medication for it but does use Tiger Balm ointment. It relieves quite a bit of pain for him.

Wishing you lots of wishes that the medication starts working and your son feels some relief!

 

[chrisnsteph1022]

I thought it was more immediate than that, like a few days after the first infusion. I'm not sure, though.

 

[scoutfinch]

The response time for Remicade varies. Some people respond immediately (within days) and for some it takes longer (weeks to several months) - and unfortunately for some it does not work at all. You should consult with his GI for advice on whether to stick with it or not.

 

[SarahAnne]

I think initially some people don't notice relief right away, after my initial loading doses I would feel the difference a few days after my infusions. I would give it a little more time to work if your son's GI thinks it will help him. The leg pain could be from the Remicade, is your son on any other meds or does he get pre-medications with his Remicade?

 

[Clarej121]

Thank you to you all for your help & advice, Bailey is no better now than he was last Nov (diagnosis). He has done 8 months of enteral feeding & the moment he eats again, straight back to pain & constant toileting.
We are in constant contact with his consultant & looks like they are scoping him again soon to see whats going on & if the 3 Infliximabs are helping at all.
As you know there are risks to the infusions so if not benifiting then may stop!
I would love him to get to school, he has missed so much, he manages to get there after his toileting has stopped ( by midday).
But half the school day is over by then...
I know his health is 1st & foremost but oviously i wish him the best future.
He actually wants to become a doctor so yes he will need lots of qualifications!!
You may say stop looking so forward to the future & take each day as it comes...
But i have looked forward to my childrens dreams coming true all their lives..

Maybe Bailey is one of them that takes longer to calm it all down... He has Crohn's throughout so alot to work on

Love
Clare xx

 

[doctor's mom]

Thank you to you all for your help & advice, Bailey is no better now than he was last Nov (diagnosis). He has done 8 months of enteral feeding & the moment he eats again, straight back to pain & constant toileting.
We are in constant contact with his consultant & looks like they are scoping him again soon to see whats going on & if the 3 Infliximabs are helping at all.
As you know there are risks to the infusions so if not benifiting then may stop!
I would love him to get to school, he has missed so much, he manages to get there after his toileting has stopped ( by midday).
But half the school day is over by then...
I know his health is 1st & foremost but oviously i wish him the best future.
He actually wants to become a doctor so yes he will need lots of qualifications!!
You may say stop looking so forward to the future & take each day as it comes...
But i have looked forward to my childrens dreams coming true all their lives..

Maybe Bailey is one of them that takes longer to calm it all down... He has Crohn's throughout so alot to work on

Love
Clare xx

I hope Bailey will get better soon! Usually this med helps faster with RA pains,and with GI illnesses it takes longer to get a relief. My daughter was getting these infusions until she developed severe side effects. From 2002 up til now she is on 6mp. I know, its another evil drug, but with its help she was able to graduate a high school, college and a med school.
Wishing Bailey's dreams come true!

 

[Ashley1]

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[moogie]

I'm really sorry to hear about your son's pain.

I've been on remicade since April of 2011. I started to feel really better on my third infusion.

I wish I could be more help..

Stay strong...

Good luck