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If Entyvio doesn't work, then Zeposia? TNF before JAK inhibitor?

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Ulcerative Colitis
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Posted 11/12/2022 12:15 AM (GMT 0)
Hi fellow UCers -

I posted a few weeks back, but thought I'd provide an update. I was diagnosed with UC in 2009, had ileorectal anastomosis surgery, where most of my colon was removed, but my rectum and a stump of my colon was left and reconnected to my small intestine.

I've been mostly good since then, but I've had stubborn Proctitis in the portion of my rectum that's left, with small flares every now and then and continuing inflammation.

I started Entyvio on 9/20 and almost two months in, I haven't noticed improvement yet, but I'll give it four months. I had hoped to start Rinvoq or Xeljanz if Enytvio doesn't work, but my GI's assistant sent me this:

Something I have learned since we last spoke is that the FDA has put step limitations on Rinvoq and Xeljanz (the JAK family) that indicate patients must try a TNF inhibitor (Humira, Remicade, Simponi) for at least 3 months and experience failure before they will allow the JAK family. Entyvio is not a TNF inhibitor so it does not count in this stepping system. There is another oral option called Zeposia that has shown good promise in treatment. This med does not have the same step requirement. We are using this med more often with good results and the data looks good. said...

Is this true? I was unaware of this. And does anyone have experience with Zeposia?

Thanks,
________________
CollegeGrad85
UC dx in 2009
Ileorectal anastomosis in 2010
Now - Proctitis
Posted 11/12/2022 1:06 AM (GMT 0)
I know that some insurance providers require step therapy, but I hadn't heard that was from the FDA. That sounds odd but I have no idea.

Zeposia is pretty new, but I think there is a recent post here from someone about it. You could do a search and see what pops up.
Posted 11/12/2022 1:27 AM (GMT 0)
If you look on the websites of Xeljanz & Rinvog, it does speak of patients that has failed TNF inhibitors, I haven't checked at the FDA's website.

Geezernow just started Zeposia so it may be too early to know.
Posted 11/12/2022 6:06 PM (GMT 0)
Agree with CCinPA. Seems odd FDA would do that but I haven't looked.
Posted 11/12/2022 8:29 PM (GMT 0)
I know some insurances require that — also had no idea FDA would require it. Are you sure whoever told you that didn’t get their organizations mixed up?
Posted 11/12/2022 9:57 PM (GMT 0)
I googled it and found articles. They're right.

"In an announcement Wednesday, the FDA is revising Rinvoq’s boxed warning to include information about increased risks of serious heart-related events, cancer, blood clots and death. The agency is also limiting the drug’s use to patients who’ve tried but failed on at least one TNF inhibitor. Pfizer's Xeljanz and Eli Lilly's Olumiant, both also JAK inhibitors, were hit with the same limitations."

https://www.fiercepharma.com/marketing/fda-s-new-jak-safety-restrictions-spell-trouble-for-abbvie-s-rinvoq-but-to-what-extent

I'd personally try Remicade way before Zeposia.
Posted 11/12/2022 10:05 PM (GMT 0)
From the FDA's website:

"We are also limiting all approved uses to certain patients who have not responded or cannot tolerate one or more TNF blockers."

https://www.fda.gov/drugs/fda-drug-safety-podcasts/fda-requires-warnings-about-increased-risk-serious-heart-related-events-cancer-blood-clots-and-death

Is further surgery an option? Remind me why they didn't remove it all other than an anal cuff...
Posted 11/13/2022 3:54 AM (GMT 0)
Sara..about to finish my starter pack of Zeposia. My insurance denied Rinvoq but approved Zeposia. I will tell you though, the possible side effects are really scary. I chose to use it out of desperation. Really don't enjoy life with UC, so was willing to try about anything. SO FAR...no problems. I did a lot of reading about Zeposia before beginning. Funny thing was, they say it changes the cell structure, but 'they' really don't know WHY it works. LOL Ohhh the things we will do to avoid UC symptoms. Best of luck to you and everyone.
Posted 11/13/2022 4:14 AM (GMT 0)
Geezer: It makes more sense now why it was denied if you have not tried an anti-tnf med like Remicade! Yes, I was terrified of Xeljanz at first too but now I wish I tried it a lot sooner before ruining my body on steroids so long. :/
Posted 11/13/2022 4:22 AM (GMT 0)
@Sara, geezer has been on Remicade, Humira & Entyvio. His gi moved him to Rinvog for a month & then his insurance denied him staying on it. This is how he ended up on Zeposia.
Posted 11/13/2022 4:27 AM (GMT 0)
Oh ok, I couldn't remember and didnt see it in his signature. Nevermind then, it still doesn't make sense. Lol
Posted 11/13/2022 12:20 PM (GMT 0)
LOL Didn't make sense to me either Sara. LOL I'm so sorry you are still having problems after having surgery! UC is SO difficult to deal with. Feel better and keep up the fight. Of everything I've used over the years, Remicade worked the best with no side effects at all. I built up antibodies to it but only after many years.
Posted 11/13/2022 5:34 PM (GMT 0)
I'm actually not the original poster here. I'm in remission. But thanks! I will stop hogging this thread now.
Posted 11/14/2022 6:11 PM (GMT 0)

geezernow said...
Sara..about to finish my starter pack of Zeposia. My insurance denied Rinvoq but approved Zeposia. I will tell you though, the possible side effects are really scary. I chose to use it out of desperation. Really don't enjoy life with UC, so was willing to try about anything. SO FAR...no problems. I did a lot of reading about Zeposia before beginning. Funny thing was, they say it changes the cell structure, but 'they' really don't know WHY it works. LOL Ohhh the things we will do to avoid UC symptoms. Best of luck to you and everyone.

Hi Geezer - do you mean the side effects from Zeposia are really scary? My GI's office has led me to believe it's a much safer drug than many of the biologics, which is why they are recommending it as next option, but I know little to nothing about it. I just know it doesn't have the black box warnings that come with Rinvoq and Xeljanz.
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