Starting Entyvio Tomorrow

Hello all,
New user here! I've only have UC for about year, but it was pretty bad when it first diagnosed. Had a bad flare earlier this year but got it under control with prednisone....but now it's back and taking all of 80mg/day to keep it at bay. Wondering if you guys could give me some tips about what to do during infusion day, if fluids are necessary (250, 500, 1L?!?) and if there anything I should anticipate. Thank you!

Also...has anyone tried Gastrocrom?

I just had my second infusion last week. It's pretty easy really. You just show up and the nurse will start an IV and then start the Entivio drip. It takes about 30 minutes for the infusion and then you have to wait there for an hour so they can make sure you didn't have any reaction.

The place I go to had drinks and snacks. I bring my own water though. And I bring headphones and listen to podcasts and watch stuff on my phone. I'm out the door in 2 hours and haven't had any problems.

I've been on it for about 3 weeks now. I can't tell if it's starting to help or if I'm just having a good week.

Good luck with Entyvio! My doctor is working to get me on it now also; so Ill be following everyone's progress too. I had a bad flare recently, spent a week in hospital but am feeling GREAT right now....prednisone and Donnatal. Antibodies to Remicade after over 20 years and my doc said Humira was a failure for me. Hopefully, Entyvio will work. Feel better soon!!!

Not sure if anyone mentioned this, didnt see it when i briefly looked through the replies. The actual infusion takes 30 minutes, however, your time waiting is typically longer, especially the first time. You typically need blood work done before you can get the infusion. if you didnt have it before, they will likely take blood before your infusion, wait for the results, and then give you the infusion when they get the all clear. nothing to be alarmed about, but i know some people expect to walk right in and be done in 30 minutes. take something to read, your phone, whatever and the time will pass quickly.

I've found that I am drowsy the hours after my infusion, sometimes as long as 24 hours. The drowsiness isnt a big problem, i get my infusion in the morning and can go function at work all day after so it isnt a big problem, but just be aware that it is normal to feel that way, especially after your first couple.

other big thing to remember is that everyone's response to it varies. I know I started feeling better after my first maintenance dosage or two whereas others it can take a while longer to get a reaction out of it. stay patient, it has been a great drug for me so far. It got me to about 75-80% remission with no side effects.

Quick question - for the people who have taken Entyvio, were you actively flaring when you received it or in remission? I've heard many times that Entyvio keeps you in remission instead of taking you there, however, this is mostly anecdotal vs evidence based...so I wanted your opinion

Hi I was actively flaring on the left side (I have been in remission in the transverse colon and right-side colon for more than a year). For me it helped a bit and I could feel it pretty quickly (I was able to come off prednisone) but I still had symptoms that impacted my quality of life, so I switched to xeljanz after 4 months.

Hello yes, asides from prednisone i was also taking azathioprine+allopurinol and mesalazine. The plan had been to stop all those if entyvio put me in remission....i also had some overlap with infliximab - last infusion was 4 weeks before starting entyvio. I think that's one of the reasons i could feel the entyvio acting quickly (3-4 weeks). But then I had to come off pred and of course the infliximab left my system...so my symptoms didn't really improve after that. I hope it works for you!!