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Entyvio Experiences?

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Ulcerative Colitis
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Posted 2/12/2019 3:46 PM (GMT 0)
So my GI is switching me from Remicade to Entyvio now. We had planned on Xeljanz but now we are making the move to Entyvio.

Any side effects or experiences y’all could share would be helpful??

I had some flu like symptoms with Remicade after infusion and others issues.
Posted 2/12/2019 7:34 PM (GMT 0)
Hi i used to feel wiped out after infliximab infusions as well as permanently feeling like i had a sore throat. With entyvio i would leave the hospital feeling the same as i arrived, i.e. no exhaustion. Entyvio allowed me to come off prednisone but unfortunately still had too many symptoms so i switched to xeljanz after 16 weeks.
Posted 2/12/2019 7:59 PM (GMT 0)
Entyvio suppresses only the gut-side of the immune system. You might experience more GI-bugs as a consequence thereof.
Posted 2/12/2019 8:27 PM (GMT 0)
Entyvio did nothing for me sadly. We have a lot of members who have had good responses though. It takes longer to work than some of the other biologic drugs.

I feel like I notice people are willing to hang on, and live with symptoms, while on entyvio because they don't have many options left after. It's interesting. I see people say they are in remission "but they go 6x a day".
Posted 2/12/2019 8:48 PM (GMT 0)
I have been on entyvio for 3 years. Every 4 weeks for the last 2. I was very lucky in that I saw results almost right away but didn't have huge success until the infusions were more frequent. It really has changed my life for the good.

I do have side effects. I get a lot more headaches. A lot more. And no amount of hydration is going to tackle them (no matter how many people on forums tell me it will). I also feel really exhausted for 2 or 3 days after the infusion. And my nose constantly runs. But that's it. I do get less headaches than i did at first. And Ive been prescribed some migraine pills. I sleep a lot for a couple of days. But I can eat anything I want and have pretty much stopped worrying about going out. (that takes a long time to conquer)

In other words...side effects totally worth it. And a shorter infusion than remicade!!!

paula
Posted 2/12/2019 9:06 PM (GMT 0)

notsosicklygirl said...
I see people say they are in remission "but they go 6x a day".

I have seen that too, also with xeljanz. Or they are still taking prednisone. For me remission means no bowel symptoms and no steroids.
Posted 2/12/2019 10:28 PM (GMT 0)
Entyvio worked great for me for over a year. Complete remission -- like pre-UC. Then I started a minor flare that has now turned into a major flare that I am still trying to get under control

Never had a side effects from Entyvio. I loved it. Wish it hadn't stopped working
Posted 2/13/2019 1:53 AM (GMT 0)
I have been on Entyvio for a year and have not gone into remission. I'm in the process of adding a few more drugs before I attempt a change to Xeljanz, but I have not many side effects with Entyvio. I have noticed an increase in post nasal drip, but that's about it.
Posted 2/13/2019 3:39 AM (GMT 0)
Thanks guys. I appreciate the input. Since day 1 of my Remicade infusion in June 17 I haven’t had any flares or problems with UC. But had weird memory issues and being able to focus after starting. Also, I think I’m the only person to gain weight after getting UC.....also flu like symptoms after every infusion. Hopefully Entyvio is different.
Posted 2/13/2019 12:58 PM (GMT 0)
Try and stay optimistic, as a little hope is a good thing smile
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