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What to expect from Entyvio?
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Ulcerative Colitis
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yellowcolon
Regular Member
Joined : May 2016
Posts : 33
Posted 6/7/2016 1:51 AM (GMT 0)
Hi everyone tomorrow I'm going for my first infusion of Entyvio or Vedoluzimab.
I'm just wondering what should I expect from it? Side effects? Effectiveness? Any feedback is appreciated.. thanks!
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 6/7/2016 3:57 AM (GMT 0)
I don't think anyone can tell you what to expect. It seems like all of these medications effect everyone differently. I was always sleepy after an infusion. Sometimes they premedicate you with something and that can make you sleepy, but the meds themselves can make you tired too. I had really awful side effects from remicade, but not so much with Entyvio. It seems like the results are just as various as the side effects. Some people do great, others have no result at all. I would go into it hoping for the best. Good luck!
Renegade88
Regular Member
Joined : Aug 2015
Posts : 30
Posted 6/7/2016 10:53 AM (GMT 0)
Just had my final loading dose yesterday - I was told I should see the full results within 2-4 weeks of that. Honestly, and I don't want to tempt fate, I've tolerated it much better than Remicade though I've had a few side effects (infected nail fold, rash, and occasionally headaches).
suzy-q
Regular Member
Joined : Sep 2015
Posts : 269
Posted 6/7/2016 6:56 PM (GMT 0)
My husband experienced super extreme fatigue. Unfortunately Entyvio didn't work at all and he gave up after about
6-7 infusions. But it works for many. Best of luck.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 6/7/2016 7:43 PM (GMT 0)
I know of one healing well poster, Charlie3, has had great results with entyvio. She usually chimes in on posts like this, about
how great it's worked for her. I can't think of many others off of the top of my head.
I see from your post history that you've failed remicade and imuran, and have a surgery date in July. Essentially, you're trying entyvio, yourself, as a medication of last resort. Often entyvio is a medication of last resort before surgery, most have failed one or more biologics before trying it. As such, a lot of the posts here haven't shown entyvio to have a lot of good results. Could be more a population-bias, the fact that most who try it have already proven to be unresponsive to all other treatments, more than the medication not working.
The entyvio infusion is given by IV under the supervision of a nurse (very similar to your remicade was). They mix the medication and prepare the IV bag. The infusion once it starts takes 30 minutes from start to finish, much quicker than remicade.
I've heard entyvio is a slow acting medication that takes 12-14'weeks to show a response in some uc patients. Maybe you'll get a quicker response, I don't know. I'd try to remain a little optimistic but also grounded that it may not work. How long you choose to wait for results is entirely up to you. It's a tough call, but many of us can relate being steroid-dependent and struggling with uc symptoms with no sense of relief in sight. You're young too, 16, so it's doubly-tough: you should be enjoying life not struggling like this...
It could be entyvio or it could be surgery. Either way I'm sure you'll find a way to be uc symptom free. Good luck and hang in there!
Casey_LB
Regular Member
Joined : Mar 2015
Posts : 310
Posted 6/8/2016 1:00 AM (GMT 0)
I had almost no side effects from Entyviio. Day of infusion and afterwards I felt exactly the same. I have a very mild rash on my forehead, which I think if from Entyvio, but cannot be sure. But no joint pain, fatigue, et cetera. I had no side effects from Remicade or Humira either (and no benefit).
After 6 months, Entyvio appears to be helping, along with hydrocortisone. I started both at the same time and started to improve in a few weeks. But when I cut back on the hydrocortisone at month 4, I got worse, to I resumed it.
Your results may vary....
Charlie3
Regular Member
Joined : May 2013
Posts : 293
Posted 6/8/2016 4:39 AM (GMT 0)
Yes I will chime in !
Have been on Entyvio for 2 years now with very good results
It did take 6 months to notice the changes
I was also facing surgery after failing all other Meds
I would hope other people with UC would have the same results
Contentprof
Regular Member
Joined : May 2014
Posts : 412
Posted 6/8/2016 5:07 AM (GMT 0)
My two cents: For me, far less than after Remicade, which caused fatigue and constipation for a few days post infusion.
Entyvio caused itchy skin in places. So we added Benadryl to Tylenol as premeds as well as solumedrol just prior to infusions. No problems since. No fatigue or other noticeable effects.
They draw blood to do some labs before infusion. I also do a slightly slower infusion time than is standard, but still it's very quick compared to Remicade.
I drink a lot of water prior to each infusion to make the IV go in more smoothly. I now have scar tissue in some veins from so many infusions over many years. It can be challenging.
Hoping it goes well for you!
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 6/8/2016 6:14 PM (GMT 0)
Today was my remicade infusion at my gastroenterologist office, and I met a nice lady whose now in remission thanks to entyvio. She's been a Crohn's patient for 40 years, and entyvio has worked the best out of the many things she's tried. Quite a vote of confidence right there for entyvio.
yellowcolon
Regular Member
Joined : May 2016
Posts : 33
Posted 6/8/2016 6:55 PM (GMT 0)
Thank you everyone for all the feedback and support, I appreciate it. The infusion went smoothly. I'm going again in 2 weeks for my second dose and if I improve enough after a couple doses maybe I won't need surgery..are there any emotional side effects that anyone knows of?
Bull101
Veteran Member
Joined : Feb 2015
Posts : 655
Posted 6/9/2016 1:56 PM (GMT 0)
I started Entyvio 8 weeks ago so I'm now 2 weeks past final loading dose. Still seeing a lot of blood, on 15mg of pred which not sure how much it's doing, I think I can see improvement, at least once or a few times a day I'll have no clear blood and a mushy soft formed bm but as far as side effects everythings going smooth. Same was with remicade for me though.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 6/10/2016 12:20 AM (GMT 0)
I am sorry to hear that Bull. Seems like some people have luck with everything and some people have luck with nothing. Don't get down though, things can turn around very quickly, sometimes it just takes some time.
Yellow, happy to hear the infusion went well. Hope to hear about
improvement soon!
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