01-25-2019, 08:46 AM   #1
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polly13's Avatar
Join Date: Jan 2012
Location: Tipperary, Ireland

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Anybody on Stelara

Hi everybody

I have posted recently about Lucy and the struggles shes been having. Tried EEN at the end of last year with some improvement but not enough, so humira levels re done and scopes this week and the upshot is that we move to stelara next week/or the week after. This will off label as there is no license for use in paediatric crohns in Europe - it is being used in the Adult world and also for psoriasis in kids but Lucy is the first kid in Ireland with crohns - so nobody with experience here. Just wondering what your experience has been like - has it worked, is the injection difficult, how soon to expect a response etc.
Many thanks
01-25-2019, 10:41 AM   #2
my little penguin
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Join Date: Apr 2012

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Ds has been on Stelara since Aug 2017
It takes long to work 6-8 months is norm
Not approved for pediatrics in US either
Ds was 13 when he started it

Psoriasis dosing does not work for Crohns

Crohns dosing
Loading dose by IV at 200-400 mg at once depending on weight
One time
Then 90 mg injections every 8 weeks
Is standard
Some need 90 mg ever 4 weeks

Ds tried 90 mg every 8 weeks for 8 months
But moved to 90 mg every 4 weeks last March 2018

Made a world of difference

No pain with injection or minimal compared to humira

Syringe is weird
Cheap Plastic case over glass vial
But works

Good luck
DS - -Crohn's -Stelara -mtx
01-25-2019, 10:44 AM   #3
my little penguin
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Join Date: Apr 2012

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Body weight* of patient at the time of dosing Dose Number of 130 mg/26 mL
(5 mg/mL) STELARA® vials
55 kg or less 260 mg 2
more than 55 kg to 85 kg 390 mg 3


01-25-2019, 10:46 AM   #4
my little penguin
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Join Date: Apr 2012

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Ds got 260 mg even though he weighs more than 55 kg
Doc wanted to be on safe side with kiddo
Gave iv solumedrol during iv infusion
No issues with injections after that
01-25-2019, 03:59 PM   #5
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Maya142's Avatar
There are some kids at our children's hospital on Stelara. They try to use it only in teens since it has not been studied in pediatric Crohn's enough. But they have used it for younger children for kids who have tried everything else.

However, it has now been approved for pediatric psoriasis who are 12 or older (I know your kiddo is younger, but it's better than nothing!). So it has been studied in kids - admittedly, at a much lower dose than is used for Crohn's.

We were told it was a better option for small bowel disease and that Entyvio is a better option for UC and sometimes Crohn's colitis. I can't remember where your daughter has disease besides perianal stuff.

We were also told it was slow acting compared to anti-TNFs like Remicade, and takes like 6 months to kick in.

I know it is definitely terrifying when your child just does not respond and is the first to try something new. My daughter's Crohn's is not bad, but her Ankylosing Spondylitis is a nightmare. She was her GI and rheumatologist's first patient to be put on two biologics - one to treat the AS, and one to treat the Crohn's. An immunomodulator was later added - a new one that has not been studied with biologics (it's used for psoriasis and psoriatic arthritis).

It has been scary but SO worth it. We have had issues with infections - I won't lie. But that has only become an issue right now (and she's been on two biologics for almost two years, with a break in-between) and mostly they have REALLY improved her quality of life.

And plus, her infection issue is now recurrent CDiff. which could happen to any Crohn's patient. In fact, she may be the first with her particular set of issues to have a fecal transplant next!

Her doctors say she is really an overachiever - she keeps having rare complications!!

Hang in there and good luck !!
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

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