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Entyvio

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Ulcerative Colitis
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Posted 1/16/2022 4:38 PM (GMT -8)
My Dr applied for entyvio yesterday. Feeling nervous and anxious. My flare has eased a lot. I can’t say why. Down the 20mg pred.
My question is does anyone ever come off entyvio when they’ve reached full remission? My Dr said they use FT on entyvio to achieve a deeper remission so ppl can come off entyvio.
Posted 1/16/2022 9:36 PM (GMT -8)
Hi @theanxiouxaries
I’ve been on Entyvio since July but still waiting for it to work. I’ve seen a few of your posts and see that you’re in Australia. Are you anywhere near South Coast NSW? I’d love to chat with you about my experience. smile
Posted 1/16/2022 10:50 PM (GMT -8)
Hi, good to hear from some one close. It would be great to chat. I’m very nervous about entyvio I’m In Wagga Wagga. NSW. My Dr is Geoffrey Tu at the Center for digestive disease in Five Dock Sydney
Posted 1/17/2022 5:01 AM (GMT -8)
Entyvio worked on me within a few weeks after loading dose. Was on it for about 3 years.
Faith
Posted 1/17/2022 9:24 AM (GMT -8)
I've been on Entyvio for almost 2 years. It was used as a rescue drug for me during a horrible flare where I was very close to needing surgery. No plans to come off of it. Too risky given the history of the severity of my flares. I think that decision will be very much between you and your dr based on your history, future symptoms, etc! Seems whether or not people can successfully come off biologics is very individualized!
Posted 1/17/2022 9:33 AM (GMT -8)
If Entyvio gets you to remission, why would you want to stop it? Once you stop any of the UC meds it's less likely that they will work when you flare and want to go back on them. Stay with whatever you find that works for as long as it works for you. Even in remission stay on your meds. There are a few people here who can manage using diet and supplements. But that's a long difficult road to get to remission ... if you can even get there with alternatives. Meds or alternatives -- neither is a 100% guarantee.
Posted 1/17/2022 11:20 AM (GMT -8)
Hope it works for you. I tried it, didn't work. If it had, I probably would've stayed on it for life (or until it stopped working).
Posted 1/17/2022 2:08 PM (GMT -8)

Theanxiousaries said...
Hi, good to hear from some one close. It would be great to chat. I’m very nervous about entyvio I’m In Wagga Wagga. NSW. My Dr is Geoffrey Tu at the Center for digestive disease in Five Dock Sydney

Happy to chat! I’m actually having a phone consult with my GP today to get a referral to Dr Geoffrey Tu as my GI is going on extended leave.
How do we send each other a contact number privately? I don’t post here often so not sure of the protocol.
Posted 1/17/2022 4:32 PM (GMT -8)
I think if you guys go into your settings and make your emails not private you’ll be able to see each other’s then when you look at each other’s profile

Been on entyvio for 5 years in March and have no plans to go off. Don’t want to risk it. Seen a few people on here who thought they could stop their medication once they were solidly in remission and they flared badly eventually.
Posted 1/17/2022 10:56 PM (GMT -8)
What are the chances lol. So far I find Dr Tu very good. He uses professor Barodys protocol.




TAA, I deleted your email, the administrator prefers that we do not put our personal information in posts. This is to protect you from getting your mailbox full of spam. You can go to My Profile at the top & put your email address in there & only members of HW can see it.

Post Edited By Moderator (straydog) : 1/18/2022 3:28:59 AM (GMT-7)

Posted 1/17/2022 10:59 PM (GMT -8)

FlowersGal said...
I think if you guys go into your settings and make your emails not private you’ll be able to see each other’s then when you look at each other’s profile

Been on entyvio for 5 years in March and have no plans to go off. Don’t want to risk it. Seen a few people on here who thought they could stop their medication once they were solidly in remission and they flared
badly eventually.

I think I’ll be Staying on what ever keeps me in remission. This last 6 months has been tough. After a good nine years I know it can change on any day. I’ll just keep praying for a cure for us all until then.
Posted 1/19/2022 8:22 AM (GMT -8)
I think that’s a good plan! Will keep my fingers crossed that you find remission with entyvio. I really love it. Be patient because it will be a while but hopefully you will start seeing some improvements in a month. Then it won’t be an immediate change but more of a lessening of symptoms. And there will still be a bad day here and there. You learn to adjust on those days and take it easy.
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