Stelara

[Kat40973]

Is anyone on stelara for ileitis ? Did it help?

 

[my little penguin]

My kiddo has been on Stelara since 2017
He has crohns in multiple places including his terminal ileum
It’s has worked well
He takes it every 4 weeks plus methotrexate due crohns and juvenile arthritis
It took a long time to start working (8 months in his case )

 

[Kat40973]

Hi thank you for the reply ! My doctor put me on it in July. My Crohns is in my small bowel ileum only. One doctor told me it can work better in the large intestine and may want to try humira but im not sure if that’s true. My calpro dropped from 300 to 53 which is a good sign. I still have pain though but don’t want to give up on stelara.

 

[my little penguin]

Stelara works better in the small intestine
Entyvio is better for the large intestine
Humira works the entire body

my kiddo has been on remicade (8 months -two allergic reactions )
Humira -5 years then stopped working
Now Stelara for over 5 years

 

[Scipio]

Is anyone on stelara for ileitis ? Did it help?

I am on Stelara for Crohn's confined the ileal region of the small bowel, and it is working pretty well. Going on 6 years now with no side effects and a near Crohn's -free life.

 

[Kat40973]

Thank you for the replies !

 

[Kat40973]

Does anyone follow a special diet ? I tried to give up gluten and lowfodmap but don’t really see a difference.

 

[Pilgrim]

My daughter went on a strict CDED diet for 12 weeks when she started Stelara. It really kick started her remission. We liberalized the diet at 12 weeks and unfortunately the Stelara wasn't ready to take over. Her fecal calpro shot up again. So we returned to the principals of the diet and at about a year after starting Stelara she is able to eat most things and maintain a good remission (scopes clean and fcal under 100.)

 

[Kat40973]

Hello I need some advice. My calprotectin was 53 on stelara and now is 73. I know this isn’t very high but no one can seem to tell me why I’m so symptomatic. They don’t know if they want to change to humira but I want to keep giving stelara a fair chance.

 

[asadmom]

My daughter went on a strict CDED diet for 12 weeks when she started Stelara. It really kick started her remission. We liberalized the diet at 12 weeks and unfortunately the Stelara wasn't ready to take over. Her fecal calpro shot up again. So we returned to the principals of the diet and at about a year after starting Stelara she is able to eat most things and maintain a good remission (scopes clean and fcal under 100.)

Did you do the maintenance phase after week 12 or add more food items to the main. plan?

 

[my little penguin]

@Kat40973
Fecal cal of 73 is normal (less than 150 )
Have you had imaging /scopes ?
Bloodwork?
How long have you been on Stelara?
Do your symptoms improve after the shot ?
Stelara can take many months to be effective

My kiddo needs Stelara every 4 weeks to stop symptoms and keep fecal cal below 15
At 6 weeks he feels horrid and fecal cal starts to climb —168
Sed rate also increases

he also takes methotrexate to boost Stelara

it took about 8 months to figure out he just needed a more frequent dose

scopes confirmed minor inflammation still present at every 8 weeks

Good luck

 

[Kat40973]

My symptoms don’t improve after the shot but seem to improve after entecort. I had a scope when my calpro was 53 which showed a couple ulcers and biopsy showed inflammation so trying to get it below 50. Thanks for all the help.

 

[Pilgrim]

Did you do the maintenance phase after week 12 or add more food items to the main. plan?

We did do maintenance but it was harder, ironically, to keep the cheats to just the 2 days. For us it just worked to use the first 2 stages. More of a self control/teens issue.when we went back to it, we had to do stage 2.