01-25-2019, 08:46 AM   #1
polly13
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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
Polly
01-25-2019, 10:41 AM   #2
my little penguin
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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
Period

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
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01-25-2019, 10:44 AM   #3
my little penguin
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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

From

https://www.stelarahcp.com/crohns-di...administration
01-25-2019, 10:46 AM   #4
my little penguin
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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
Maya142
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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 !!
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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
03-29-2019, 05:29 AM   #6
polly13
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Hi everybody just thought I'd come on an give an update on Lucy, due to her harbouring a virus she didn't actually get her infusion until the end of February, by which time she was really sick - I've never seen her as bad!. So four weeks today and the difference is remarkable - she is not 100% there yet but every day she is coming back to us a little more. She returned to Football on Monday which was a huge step and thinks she feels up to ballet class this evening - so all good. Thanks again for all your support.
03-29-2019, 05:56 AM   #7
my little penguin
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So glad you are seeing an improvement
That’s great news
Stelara is slow to work (months)
But eventually it did get Ds back to baseline
Good luck
03-30-2019, 01:07 AM   #8
Jelly loves Peanut butter
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Happy Lucy is feeling better💕🤗 prayers for continued healing❤️💜💙
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Mom of Lincoln (age 12)

Dx. Crohn's 9/2016 (age 9)
Dx. Juvenile Spondyloarthritis 9/2017 (age 10)

6-Mp 9/2016-10/2017
Remicade started 9/2017
MTX started 9/2017
03-30-2019, 04:22 PM   #9
Maya142
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So glad she is feeling better!! Way to go Lucy for getting back to sports and ballet so soon - she is one tough kiddo .
03-30-2019, 05:44 PM   #10
pdx
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Glad it seems to be working for her!
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
04-08-2019, 05:39 PM   #11
kimmidwife
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Glad it is working for her. It has been great for my 21 year old and my 10 year old is starting tomorrow.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
04-11-2019, 08:13 AM   #12
polly13
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And I spoke to soon........................... symptoms started to return about 2 weeks ago very gradually for a couple of days and then with a bang, so second dose brought forward to 5 weeks (exactly), slight improvement since but certainly slower than initial infusion we are at day six post injection, very tired , pale and lots of bathroom visits again .... is there any let up for our children.
04-11-2019, 09:37 AM   #13
my little penguin
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Ugh
Did she get iv steroids with the first infusions ?
That made Ds feel great at first
Stelara is very slow acting
I was ready to switch off it more than once for ds
Bridge therapy
Steroids are needed until it kicks in
Took 8 months of 90mg every 8 weeks then Ds was switched to 90 mg every 4 weeks
Now he gets three great weeks and slowly goes downhill on week 4 up to the shot day
Hope it doesn’t take her as long
04-11-2019, 12:38 PM   #14
Maya142
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We were told the same - Stelara takes at least 6 months. My girls haven't tried it (yet!) though.

Is she on steroids at all? Pred? Or maybe even Entocort or Uceris would be enough of a bridge.

Really hope she feels better soon .
04-12-2019, 07:18 AM   #15
polly13
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No steroids to bridge wouldn't give them - was actually really annoyed at the whole process - our GI was on holidays for the two weeks that all the crap around the infusion was going on so GI covering would not make any decisions and to be honest by the time she go the infusion she should have been in hospital,(we went to get it 5 times on got it on the 5th time) - we are three hours from the hospital and have to negotiate city centre traffic not fun with a child who needs the bathroom 15 times a day - so I think it was because she was so sick that the improvement looked really good but also that the infusion wore off. My sister works for the company that make stelara and has visability of all the data and was and is very much of the view that she should be on steroids to bridge but Im not having any luck on the other hand because she is the first patient for them they are being ultra careful. /Yesterday was a good day.
04-12-2019, 10:32 AM   #16
my little penguin
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Your poor Dd
Can they offer een while you wait for it to kick in at least ?
It helps some
Not a ton but some
I can pm you the studies on Stelara and adolescents/PsA if that would help at all
04-12-2019, 01:06 PM   #17
Maya142
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Poor Lucy! Given her symptoms are they still trying to go 8 weeks between injections? It sounds like she needs them more often, at least right now. Once she's in remission, you may be able to space it out to 8 weeks.

That said, I know Stelara is really expensive. I don't know how the medical system works in Ireland, but in the US, you'd typically have to appeal several times and probably have to do a peer-to-peer review before insurance will cover a higher dose.

She really should be on steroids - is your GI back now? If so, I'd try to talk to him or his nurse about a bridge therapy, considering her symptoms.
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