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Restarting Entyvio?

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Ulcerative Colitis
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Posted 4/18/2023 11:45 PM (GMT -5)
Hey guys, has anyone stopped and restarted Entyvio?

I’ve been on it for about 9 years with great success, but currently have a pretty bad flare up. The plan is most likely going to be stopping Entyvio and going on rinvoq.

I’m just concerned that once I stop entyvio things will get worse….so wondering if anybody has done so and gone back on. Any issues? the doc said it shouldn’t be a problem to restart it but he’s pretty confident it’s no longer working anyway so there won’t be a reason to restart.
Posted 4/19/2023 9:12 AM (GMT -5)
Damn! So sorry! There seems to be a trend here lately of people in long term remission going into flares. This damn disease!

Anyway, now 6 years on entyvio but I’ve never stopped it and restarted. Just curious if you’ve tried other things to stop the flare? How bad are your symptoms?
Posted 4/19/2023 9:15 AM (GMT -5)
Flowers, I was thinking the same thing... it seems like there are a lot of members here going into flares right now after a long remission (myself included). I know we are only a small piece of the entire UC population so it's just some kind of weird anomaly.
Posted 4/19/2023 9:22 AM (GMT -5)
I’m starting to think it’s that eventually we’ll all flare. Maybe our disease gets used to a med and starts to find a way around it and that means a switch to a different med. Just goes to show there really is no cure — not to say that remission isn’t a great thing, because it definitely is. (Sorry, feeling a trifle dejected this morning)
Posted 4/19/2023 9:59 AM (GMT -5)
I share that dejected feeling. sad
Posted 4/19/2023 11:00 AM (GMT -5)
Try being in remission for 3 years on Infliximab Biologics, doing fantastic and then your IBD team decide upon themselves to take me off it due to antibodies build up and for me to then flare 3 months later. To say I’m pissed off is an understatement. Currently battling it at moment and plan is to get back on another Biologic. My guessing could be Entyvio
Posted 4/19/2023 12:17 PM (GMT -5)
Tblock I am so pi$$ed off for you! Can’t believe they did that to you. Hope entyvio works for you! I’ve been really happy with it. Took me about 4 months to be symptom-free but I was much better by probably the end of loading doses and kept improving from there. I might have been off steroids by then too although my memory of the timeline is a bit fuzzy now.
Posted 4/19/2023 7:11 PM (GMT -5)
Right now the only thing I’m on besides entyvio is 40mg of pred, and currently tapering at 30. It’s helped, this last week of 40mg has been a pretty good week overall as far as uc goes…although I was bleeding today.

I had a cdiff test that was negative…but that’s about it. Still waiting to hear from the doctor about next steps after the blood work, which is kind of frustrating because he got the results last week Friday.
Posted 4/19/2023 8:09 PM (GMT -5)
You could ask to stay on the Entyvio and see if you're okay after getting off pred. Are you already on the highest dosing schedule for that med? I can't remember if that's one you can increase the dose of like the others? I agree with your doctor about going back on it later.
Posted 4/19/2023 8:21 PM (GMT -5)
Yea I’ve been on the 4 week infusion schedule basically since the beginning, which I think is as aggressive as they get with it. We’ll see, hopefully I hear from him tomorrow
Posted 4/20/2023 9:26 AM (GMT -5)
Gotcha. Good luck. It's a lot nicer just taking a pill so hopefully that route works if you take it.
Posted 4/20/2023 1:38 PM (GMT -5)
When i switched from entyvio to xeljanz I had an entyvio infusion then started xeljanz 2 weeks later, so that there was still some entyvio in my system. I agreed with my GI that if xeljanz didn't work for me I could go back on entyvio. But it started to work for me such that I didn't want or need to have another entyvio infusion.
Posted 4/20/2023 7:26 PM (GMT -5)
That’s good to hear….I’m really hoping the next med works. I’m really dreading going through an uncontrollable flare or constant cycles of pred.
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