Change from Entyvio to Stelara or Skyrizi??

[nelsonshan]

Hi Everyone - it's been a long time since I've been on. Ian is now 15. He's on 80mg Humira weekly and Entyvio infusions once monthly. He just had scopes on 12/23 and he still has an area of active inflammation at the cecum that his dr is concerned about. He's having an MRE tomorrow, so we'll see what that says, but she is leaning towards switching the Entyvio to Stelara or Skyrizi. Thoughts? He was on Stelara when he was 10, and everything got worse, so we switched to Entyvio. Then we realized he needed 2 biologics after a fistula, so added on Humira (which he was on prior to the Stelara). He's gradually upped the dose on the Humira to 80 weekly. I'm leary since Stelara didn't work before, and Skyrizi is only an IL 23 - so why would that work better? Anyone have any input?

 

[Scipio]

I'm leary since Stelara didn't work before, and Skyrizi is only an IL 23 - so why would that work better? Anyone have any input?

Skyrizi is specific for IL-23 and Stelara is specific for both IL-23 and IL-12. However, it is thought that the anti-IL-23 action of Stelara is doing the heavy lifting in battling the Crohn's inflammation. The anti-IL-12 activity appears to be just along for the ride, so to speak.

Given all that, why would Skryizi work any better than Stelara? Logic suggests that it won't, but we have the example of Remicade and Humira that both bind TNF and similarly should work just the same in treating Crohn's. But we regularly hear from patients on this forum that experienced good success with one but not the other, and vice versa.

In addition, despite their similar specificities, Skyrizi recently out performed Stelara in successfully treating IBD in a head-to-head comparison clinical trial.

With these two factors in mind , it might be worth a shot to give the Skyrizi a try. despite the earlier failure with Stelara.

 

[my little penguin]

Other question would be how long was he on Stelara and at what dose frequency ?
Stelara for my kiddo was useless for almost 8 months .
At that point we switched to every 4 weeks at 90 mg.
Doc was fighting insurance on getting the higher dose /frequency approved the whole time.

That said skyrizi might work better just depends on the dose /frequency used.
Has he had a second opinion for refractory patients at Cleveland clinic or chop etc????
Especially if he has needed humira at 80 mg weekly plus another biologic .

My kiddo is on two biologics (one for crohns /juvenile arthritis and one for auto inflammatory disease )
Plus methotrexate so no judgement
Just do what works for your kiddo.
We also got multiple second opinions and all agreed -the med combo Ds is currently on is working so stick with it .

Hope skyrizzi is the magic combo your kiddo needs and works

Other thing to consider most docs don’t tell you till later ….
Puberty is evil
It causes the immune system to go into over drive for all the growing /chemical/physical changes needed.
This means despite the best efforts of the biologics and meds to squash the immune system .
Most don’t work as well if at all
Puberty was a very rough time inflammation wise for my kiddo
He made it to the other side but the ride to get there was tough .

Hugs

 

[nelsonshan]

Thank you both for the input.
Ian was also on Stelara every 28 days - every 8 weeks didn’t do anything.
Before he went on Stelara, I got a second opinion through Boston Children’s. Before we switched to Entyvio, we got a second opinion through CHOP.
According to the biopsy results of his scopes, the inflammation around the cecum is mild. I’m wondering why she is still pushing for a change. I know we need the results of the MRE still.
The other thing that is worrying me is our insurance will no longer cover Humira beginning of the year. So he will have to go on simlandi , a biosimilar. I know theoretically it is supposed to work the same, but shouldn’t we only change one thing at a time? Maybe we should see how the new simlandi works before switching tge Entyvio to Skyrizi?
Stressed.
I should probably also mention he has had arthritis on and off through the years. He also has CRMO. Last full body MRI in August showed he has multiple new areas in legs and feet. He has no symptoms from this, however. His Rheumatologist would be happy with a switch to skyrizi. They refused the pamidronate infusions for now.

 

[my little penguin]

So my kiddo has juvenile arthritis, crohns and sweets syndrome .
Rheumatology only liked Stelara when it was high frequency (every 4 weeks ) plus mtx .
Provided his arthritis (ERA) stayed away from the spine . So far so good.
Not sure on skyrizi track record for arthritis and which types other than psoriatic that it treats well …..
Ilaris is his second biologic.
It treats the sweets syndrome and a tiny bit of crohns/arthritis.

One thing we found when using multiple biologics ..
Do not let them run out at the same time.
Meaning don’t have shot day for humira be the same as infusion day for entyvio .
Ds has his staggered .
Given the meds he is on he shouldn’t have any mild inflammation so not sure if waiting would help.
Could they switch off entyvio and add a jak inhibitor instead ???
Hopefully they find the right med combo for him soon.
I know for ds it took years and was very frustrating.

Fingers crossed