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Crohn's Disease Forum » Parents of Kids with IBD » Remicade dosage increase


04-19-2017, 12:53 PM   #1
Ladybug12
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Remicade dosage increase

My daughter is currently receiving infusion's. Previous lab work shows her levels low. Just want to get some feedback from those whose kids dosage amounts were increased.
04-19-2017, 03:38 PM   #2
Maya142
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My daughter's dose was increased - we started at 5 mg/kg, then went up to 7.5 mg/kg and then several months later 10 mg/kg.

She had no side effects with the dose increase.

Kids often need higher doses, it's not uncommon.
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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
04-19-2017, 03:42 PM   #3
my little penguin
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Ds same started at 5 mg/kg
Then 7.5 mg/kg every 6 weeks

No side effects

Good luck
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04-19-2017, 04:43 PM   #4
Mehita
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DS started at 5mg/kg every eight weeks. He kept petering out around 6 1/2 weeks (fatigue and nausea) so we had him tested and he had no Remi in his body at 8 weeks. His GI bumped him to 7.5mg/kg and every six weeks and he's been great since. I think that's part of the magic of Remi is that you can play with doses and timelines to see what works best for your child.
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
04-20-2017, 08:37 AM   #5
Ladybug12
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OK guys. I sincerely apologize if this question has been asked before. I've tried reading a lot here before askin questions. Has weight played a part in the dosage increase? She is 4'11 and 88lbs.
04-20-2017, 11:27 AM   #6
Maya142
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No problem!! Weight can play a part. The dose is usually mg/kg, so as the kiddo gains weight, the dose has to be increased. So for example, if she was 40 kg and and at 5 mg/kg, she'd get 200 mg. If her weight increased to 45 kg, then they'd give her 225 mg, if they wanted her on the same dose.

Or if her levels are low at that dose, then they would increase the whole dose. So from 5 mg/kg they may up it 7.5 mg/kg.

Does that make sense? It's a bit confusing.
04-20-2017, 03:30 PM   #7
Ladybug12
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No problem!! Weight can play a part. The dose is usually mg/kg, so as the kiddo gains weight, the dose has to be increased. So for example, if she was 40 kg and and at 5 mg/kg, she'd get 200 mg. If her weight increased to 45 kg, then they'd give her 225 mg, if they wanted her on the same dose.

Or if her levels are low at that dose, then they would increase the whole dose. So from 5 mg/kg they may up it 7.5 mg/kg.

Does that make sense? It's a bit confusing.
Thanks for the info. She is currently at 5mg/kg.
04-28-2017, 11:41 PM   #8
Mehita
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Weight was a factor in DS' bump to 7.5mg/kg. He was hovering just under 50kg and the breakpoint for an increase was 50kg. I don't remember the details, but his GI had to follow some pretty strict protocol and couldn't up the dose without approvals (from insurance?). Anyway, DS finally, broke 50kg and it all worked out.
05-01-2017, 03:00 PM   #9
cassimw
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My daughter's dose was increased - we started at 5 mg/kg, then went up to 7.5 mg/kg and then several months later 10 mg/kg.

She had no side effects with the dose increase.

Kids often need higher doses, it's not uncommon.
Agree with Maya. This was very similar with my daughter. She's at 10mg now, but started at 5 and worked her way up. No side effects.
05-02-2017, 07:18 AM   #10
Ladybug12
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Agree with Maya. This was very similar with my daughter. She's at 10mg now, but started at 5 and worked her way up. No side effects.
She is going from 5mg to 10mg.
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