Starting Stelara

[ormsklad]

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]

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

 

[Scipio]

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.

 

[ormsklad]

Thanks for the replies

Well it’s been two weeks and to be honest. I have felt better have felt sick a few times but overall been quite good.

I do not want to tempt fate but fingers crossed.

 

[Grandma McB]

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]

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

 

[Grandma McB]

Thank you, I will check what dose is for my weight.

 

[ormsklad]

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

 

[Grandma McB]

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!

 

[my little penguin]

Wooo hooo !!!
yippee
You can do it
Just gave Ds his Stelara on Monday

 

[Grandma McB]

Well its been a long haul to get approval through Johnson & Johnson for Stelara. I started in August and just got the approval a couple of weeks ago. Now my problem is they are saying I have to have spent about $2200.00 in my out of pocket costs for prescriptions to get it. I am no where close to that amount. I sent a message to my doctor. She called and Johnson and Johnson and they will give us a decision if they will let me have it not by Monday. My dosing Infusion is scheduled for this coming Tuesday in the afternoon. Of course this approval is only good until the end of this year. I did submit my application for next year a couple of weeks ago.

Nowhere in the application did I spot that requirement that you have to have spent 4% of your total gross income on prescriptions. Definitively upset that I spent all these months trying to get this approved! Hoping whatever my doctor says will work!