• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Stelara questions

OK--I want to do some prep before my daughter's GI appointment next week. It does look like Stelara might be a better next option, rather than Entyvio. I'm thinking that her doctor is suggesting Entyvio only because E told her that she prefers infusions to shots.

So a few questions for those of you with Stelara experience:

How painful are the shots? Similar to regular shots like flu and covid or significantly more painful?

What dose did your kids start with and what are they on now?

How long did it take for you to see results, and did you need bridge therapies until that time?

Is your child also on mtx?

Anything else I should know?

Thank you!
 

my little penguin

Moderator
Staff member
Stelara is infusion dose
Then standard 90mg every 8 weeks
My kiddo was already on mtx for juvenile arthritis so that continued
Took pred as bridge therapy
Started in august - still not working /scopes showed mild inflammation in End of feb months
Upped to every 4 weeks at 90 mg
took a month or two

per Ds
Shot doesn’t really burn
As long as you leave it out for 15 minutes prior
Does not hurt as bad as the flu shot
Very easy per Ds

my only complaint is the syringe is in a thick plastic case with the glass vial inside
I am always afraid the plastic will snap

student health could give her the shot
 
  • Like
Reactions: pdx
Infusion for loading dose, then 90 mg every 8 weeks.
H wasn't responding/low drug levels at that dose so moved to 90mg every 4 weeks.
H has good drug levels at that monthly dose but fcal is up so she is doing 6-10 weeks of EEN. We'll see if that helps her.
We're hanging around in emerg for a different issue today so I asked her and she said it hurts slightly more than a flu shot but her leg isn't sore or anything afterwards.
We take it out of fridge in advance and the syringe is annoying because of the spring loaded needle cover. Pretty much what mlp said!
I read a study that suggested monotherapy is preferred and effective with Stelara.
 
  • Like
Reactions: pdx
Location
San Diego
1. How painful are the shots? Similar to regular shots like flu and covid or significantly more painful?
Very mild needle prick only. Not nearly so painful as a flu shot or any other immunization because it doesn't induce the inflammation that makes your arm so sore the next day the way vaccines do.

2. How long did it take for you to see results, and did you need bridge therapies until that time?
About 2 weeks and no, no bridge therapies necessary. But others have reported that it ltook a lot longer for their Stelara to kick in.

3. Is your child also on mtx?
Stelara is often given as monotherapy (no MTX or azathioprine) because it is a lot less immunogenic than the older biologics like Remicade. The percentage of Stelara patients who develop antibodies against the drug is pretty low.
 
  • Like
Reactions: pdx

Maya142

Moderator
Staff member
My daughters have many friends on Stelara and we did a LOT of research about it because M was running out of options.
They have always been told it’s nothing like the old Humira that burned - that it not very painful at all.
All the young adults my daughters know do their own injections, many with significant hand arthritis so while I can’t say how hard it is, it does seem like it’s doable.
But you can definitely get student health to administer them. You’ll need documentation from your doctor and you’ll also likely need to have the Stelara shipped to the health center, since if you send a package to the regular mail room at a college, it’s likely going to take them a while to process it (sometimes a day or two at one of girls’ schools!) and of course then it won’t stay cold. If she lives in an apartment building and can get mail at her building then you’d probably be fine shipping it there but if she’s in a dorm we ere told the health center was safest.
 
  • Like
Reactions: pdx
The injections are okay the only time it hurt was when I forgot to pinch an inch and just stuck it straight in. Couldn’t tell you how long it took to work as I was also quite anaemic and had an infection and flaring so had the infusion plus steroids, antibiotics and iron pills at the same time, maybe a few weeks before I felt a bit more human again?
A big advantage of stelara over entyvio for me (other than it working, which is quite important) is the home injections rather than a couple of hours in an infusion centre during covid. Don’t know if you guys have omicron yet, here in the UK we are being told two jabs doesn’t do a lot against it and that’s in the healthy folk
 

my little penguin

Moderator
Staff member
@Delta_hippo we have been told here
Minimum of three shots (series ) for immunocompromised. They also released and recommended evushield (two shot monoclonal antibodies ) to be given to prevent Covid in immunocompromised AND a “booster “ shot six months after the lhird shot for immunocompromised

that’s all for now
Who knows next week 😂
Just keeping giving Ds whatever they offer
 
Top