Crohn's Disease Forum » Treatment » Remicade/Infliximab » Child starting Remicade

05-13-2016, 04:51 AM   #1
Join Date: May 2016
Location: Cork, Ireland
Child starting Remicade

Hi all, new to this site. I have a child of 14 with crohns since June 2015 he is on mercaptopurine, and not doing so good, he has chronic fatigue, very poor appetite, under weight, finds it hard to concentrate in school or get out of bed in the mornings.he has no pain but feels bloated and used toilet 3 times a day. His mood is so low. his fecal calprotectin came back at 1504 extremely high, bloods normal. He is to start on remicade on Friday and am terrified of the side effects. Any advice or help would be appreciated guys thanks
05-13-2016, 05:35 AM   #2
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Join Date: Oct 2013
Location: vienna, Virginia

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I am going to tag my little penguin and clash.
05-14-2016, 12:25 PM   #3
my little penguin
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Join Date: Apr 2012

My Support Groups:
Please check out the parents sections
Lots of btdt exp from other parents

Ds started remicade at age 8
He was dx at age 7
No real side effects
He had to switch to humira after 8 months since he had an mild allergic rxn
He is allergic to most foods/drugs /bees etc so this was expected
He was placed on humira and has been on that for four years
He also takes Mtx for his juvenile spondyloarthritis

Side effects are potential side effects
Key works potential
Riding in a car ( risk of death 1 in 250)
Swimming ( 1 in 1000)

T cell lyphoma for the average person without Ibd on the street
2 in 10000

T cell lyphoma using biologic plus immunosuppressants (6 in 10000)

Risk of liver failure Steven Johnson syndrome or death from something simple as Tylenol or amoxiciilian is also high and these are given daily to infants

My point is you take risks everyday to get a better quality of life
- no one is telling you though

The benefits of these meds far out way the risks which is why doctors prescribe them

Big hugs
Hope the infusion went well
Fwiw ds loved remicade compared to humira
Nurses fawning over him
Missing school etc...
DS - -Crohn's -Stelara -mtx

Crohn's Disease Forum » Treatment » Remicade/Infliximab » Child starting Remicade
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