• 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.

Starting Stelara

Hi everyone

So I have been in remission for eight years but started having issues last year. My previous CT reported it had burned out.

last Aug I have changed my GI and he advised I have active inflammation. So I’ve had the Budesiondie steroids and just got the funding in the Uk for this.

Anyone had any side effects while having the loading dose or after an injection if so what are they and how long did it take to show, and how long did it last.

I know this might sound daft but after a year on methotrexate my liver had been hit badly.

I know I am lucky getting the funding for this drug I don’t want to sound ungrateful but like to hear others issues if any.
 

my little penguin

Moderator
Staff member
My kiddo is 17
He started Stelara at 14
He was dx At age 7
so 3.5 years of Stelara
No issues with infusion or injections
It does take a very long time to start working
Average is 8 months
My kiddo needed it every 4 weeks at 90 mg to be effective but he also has juvenile arthritis in addition to crohns
Good luck
 
Location
San Diego
Similar here. I've been on Stelara for over three years now, and I haven't had any side effects or issues from the loading dose or the maintenance doses. It is commonly reported that it take a long time to kick in, but foir me it worked reasonably quickly. My symptoms (primarily pain) were much reduced after about a month, and I've been in remission ever since.

Also, I am taking the Stelara as monotherapy, meaning no MTX or azathioprine to go along with it. It is reportedly much less immunogenic (less likley to lose effectiveness due to generation of antibodies) than some of the older drugs such as Humira and Remicade.
 
I will be starting Stelara soon as Enytvio no longer is working for me. What was the amount of the med that is given in the first dose through infusion and what is the dose for the syringe. I will be on it every 8 weeks.
 

my little penguin

Moderator
Staff member
Infusion dose is large but based on weight ….
My kiddo was 13 or 14 at the time
Syringe is prefilled
Crohns dose in the US is 90 mg every 8 weeks
Psoriasis dose is 45 mg every 12 weeks
Some different countries use the lower dose of Stelara even in crohns

my kiddo takes 90 mg every 4 weeks
Stelara takes a long time to kick in
Average was 6-12 months
 
Hi
Welcome to the club!

I can honestly say this drug has been a lifeline so far. I have had more energy and nice firm poops.
My dose now is x2 vials of 45mg every eight weeks and I do this because of a latex allergy.

My loading dose was 512 mg. the only side effects currently is hip pain but everything is good otherwise.

I also do 8 weeks too
 
Thank you! Glad to hear that this is working for you. At my worst time of Crohns my Doctor started me on Humira and it was a life saver until it quit working. Then I switched to Entyvio and it also worked for years until it stopped. Hoping that Stelara will work for me also!
 
Top