Entyvio

I’m interested in any responses as well. Just had a conversation with my doc about possible Entyvio.

As a poucher from Shanghai, China,  currently, I'm under hospitalization and about to start Entyvio treatment due to remicade and humira failed with my chronic pouchites,  I'm happy to hear anyone who has the successful story with Entyvio treatment as well.  In China, since sugery rate for UC treatment is comparetive low, and biology agents were just covered by nationwide public health-care insurance from last year(only Remicade and Entyvio as of now), for the practice experience with biology agent treatment for pouchites here even for a top doctor in the field is very limited except the studies they learnt.   

Unfortunately the only info I can relay is not too positive, but everyone is different!

I had my first Entyvio infusion per the request of my GI. In the middle of that same night I woke up with the most excruciating pain in both legs. It felt like someone was smashing each bone in my leg with a hammer. They rushed me to the hospital and figured out that I am allergic to Entyvio. The ER doctor went on to say that they do not recommend Entyvio as a great treatment option, because there is not enough research/studies about it out there. But like I said, everyone is different...hopefully you get to finding the treatment option that is right for you!

@Li__

It felt like someone was smashing each bone in my leg with a hammer. They rushed me to the hospital.....

Yikes! Sorry to hear that. Although I am on Remicade and haven't taken Entyvio yet, I am told it's the backup plan and Remicade is usually only considered before Entyvio because of more clinical data on its effectiveness in treating J Pouch inflammation. That being said, I have seen in my infusion room (which is usually 4 patients at a time) many Entyvio patients getting infused and, fortunately, they didn't experience the same reaction as you. It's a 30 minute infusion time vs. anywhere from 2-2.5 hours for most Remicade infusions. Therefore I get pissed when I see those Entyvio infusees scooting out in less than one quarter of my own infusion time. It's like they are spoiled or something while I have to bring work.

Anyone have insight on whether those of us on remicade, entyvio or other biologics need a booster shot of either Pfizer or Moderna vaccine soon.  I hear CDC now allowing boosters (along with Israel and Germany) for immunocompromised people.  Anyone tested their antibody levels?  Wondering if we are in same boat as those on chemotherapy or transplant ant-rejection drugs.  There doesn't seem to be data available on this question.

I've had really good luck with Entyvio so far.  This is my third biologic.  I've also tried Humira and Remicade.  It seems to be working to control my chronic inflammation.

Hello Jpouchers I am currently receiving Entyvio, have been since Sep 2019 - it is the only medication that has worked for me.  Minor side effects and works well.

I started on Entyvio also in Sept of 2019.  I would like to stop if my chronic pouchitis is gone but waiting to get a pouchoscopy once I feel hospitals are safer from covid.  I seem to catch anything around such as shingles 2 weeks after an outpatient service and then Diff_C 2 weeks after another outpatient procedure.  I sure am not convinced about a booster but maybe .......

Has it worked for you?

I am having my third infusion this week after my second one found I was able to get through the night without having to go to the toilet last from 10.30 to 5 in the morning that is a major bonus for me also I feel I have more energy at this time no negative results looking forward to more improvements 😊

That’s great to hear.

I have been on Humira, Entyvio and Stelara.   I didn’t have side effects from Entyvio but after a couple of pouch exams that showed continued ulcerations and inflammation , my physician recommended that I try  Stelara.  That one has worked well for me.