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Ulcerative Colitis
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Posted 5/23/2020 12:51 AM (GMT 0)
Hi everyone!
I have unfortunately suffered with UC for 25 years. Tried Humira, developed antibodies against it, tried Remicade.. put me in the hospital for tachycardia, tried 6MP.. made me vomit!
Have been mostly on Prednisone for 25 years. My Dr. said it is time we try Entyvio.
I am petrified, because I have heard some people get really nasty side effects! I also read , but don’t remember, there are certain things such as taking benedryl before, drinking a lot of water before and after.. I am a worrier... which doesn’t help this situation. Have any of you had bad side effects... any good things about it. I will drive my self crazy.. wondering what to do.
Please respond.
Sincerely,
Carol
Posted 5/23/2020 3:40 AM (GMT 0)
I’ve been on entyvio for 3 years now and have no side effects. It depends on your dr if they prescribe premeds (Benadryl and a weak steroid). My 1st GI said he wouldn’t prescribe it unless I needed it and I never did. My 2nd GI put it in his prescription but I’d already been about a year with no problems so I refused those meds. I know it’s scary but really I have no effects from it other than complete remission!😀

The thing I like about it is that it’s a quick infusion — only 30 minutes. I try to drink water beforehand mainly because I have small veins and it helps if I’m hydrated. Other than that the only thing I notice is about an hour after my lips feel dry. But not my mouth so that’s kind of weird. But I’ll take it! 🤪

I wish you as good a luck with it that I’ve had! Let us know how you do.
Posted 5/23/2020 6:45 AM (GMT 0)
3+ years on Entyvio. No side effects. No issues with infusions. I never take any of the pre-meds. I think my experience is pretty typical.
Posted 5/23/2020 6:50 PM (GMT 0)
I'll be starting entyvio in a couple weeks, my first biologic. good luck!
Posted 5/24/2020 12:26 AM (GMT 0)
Hi Cario….I was on Remicade over 20 years and did great until I got antibodies to it, then tried Humira...nothing bad, but didn't work for me. I've been on entyvio since last year and have been doing great for about two months now. It did take a while for me to get into remission, but it only took about two months I think....to get a LOT of relief from UC symptoms. I did get C. diff while on Entyvio, but I got that right after a hospital stay. After I got past that...I've been doing great. I wouldn't worry about Entyvio. My doc prescribed Tylenol and Benadryl as pre-meds but I've not needed either and told him so. He said great. Entyvio infusions are SO much quicker than Remicade was. Only takes about half an hour; the pharmacy takes longer than that to mix it, where I go. Fear not and best of luck to you.
Posted 5/25/2020 5:35 PM (GMT 0)
I'm at the 6-month mark with Entyvio, but haven't seen any noticeable improvement (I have Crohn's). In fact, I'm beginning to wonder if it could be working against me?? I say that because I've started to notice a pattern where I feel worse 2-3 days after infusion day. I feel agitated/anxious, and get pain & tenderness around my fistula.

Could this be a side effect or a sign of some kind of reaction?
Posted 5/26/2020 11:56 PM (GMT 0)
I loved Entyvio. Absolutely no side effects, felt completely like I did before I ever had UC. Sadly it stopped working for me after over a year. It works for a lot of people for far longer though so don't let me discourage you.

Try not to get scared over internet stories. I think Enyvio is likely the safest of all the biologics since it specifically was designed for UC and targets the colon so it's not systemic.

Keep us posted!
Posted 6/17/2020 2:46 PM (GMT 0)
Hi Carol, I am bumping your thread up, not sure you saw these responses or not. Sorry to read that your anxiety is getting the best of you.
Posted 6/22/2020 9:19 PM (GMT 0)

albear99 said...
I'll be starting entyvio in a couple weeks, my first biologic. good luck!

Why entyvio as the first biologic? My doc says i should try Remicade/Humira first. Entyvio on the books sound much better.
Posted 6/22/2020 10:26 PM (GMT 0)
I thought the entyvio infusions were easier than the others. It didn't work for me unfortunately, but if it had, I would have been happy because I didn't have any side effects and I didn't have joint pain like I had with the others. I wouldn't stress too much. I hope you have luck with entyvio!
Posted 6/23/2020 2:08 PM (GMT 0)

jazz27 said...
Why entyvio as the first biologic? My doc says i should try Remicade/Humira first. Entyvio on the books sound much better.

Entyvio was my first biologic too. I think it — u fortunately — depends on your insurance. Also though some doctors feel remicade , having been around for over 20 years, it has a longer track record.
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