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Vedolizumab - how effective?

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Ulcerative Colitis
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Posted 10/16/2019 10:34 PM (GMT 0)
Hi,

I have been in the midst of an UC flare since May. I initially doubled my Pentasa to 4g a day and was put on a course of Budesonide (I have stayed away from Pred due to historic reasons) but neither helped. I was also put on Mercaptopurine but had to come off it due to adverse side effects. A colonoscopy showed my UC to be severely active up to and including my sigmoid colon. I was subsequently put on Infliximab but had an allergic reaction due to built up anti-bodies I guess from having it a few years ago (when it was highly effective).

My consultant has now put me on Vedolizumab and I had my first infusion last week. I was a little gutted to be told by the nurse that it can take up to 10 weeks to work.

My UC symptoms are getting worse and I’m finding the urgency and subsequent accidents quite debilitating and a nightmare with two young children to look after. If anyone has any positive experiences of being on Vedolizumab to give me some hope that things might get better I’d be so grateful.

Thank you x

Post Edited (K8) : 10/16/2019 4:43:24 PM (GMT-6)

Posted 10/16/2019 10:56 PM (GMT 0)
Entyvio put me in remission. I’ve been on it for 2 1/2 years. It is one of the slower acting drugs. It took about 4 months for symptomatic remission for me. But don’t get discouraged by that figure. It was slow and steady improvement along the way. I actually felt a difference the first infusion— I just felt much stronger that night. Maybe it was psychosomatic but I’ll take it. I’m very happy with entyvio and am living my life like before UC. No symptoms (well occasionally I’ll have a little urgency or go more than once a day but it’s really no biggie) and my last colonoscopy found no microscopic signs of disease.

I have no reactions or side effects. Life is good again. You can (and should) use rectal meds to help your symptoms until entyvio kicks in!

Good luck and let me know if you have any questions or concerns
Posted 10/17/2019 5:19 PM (GMT 0)
Thank you so much for your response, it has given me some hope that things should hopefully get better. Obviously patience is the key - it’s just a little frustrating as this flare seems to have been going on forever and I just want a life back!

I have spoken to my IBD nurse today about rectal meds and they are going to prescribe me some mesalazine enemas. For some reason they have always been a little averse to giving them to me. Hoping they may give me a little relief in the meantime.

Thank you again x
Posted 10/18/2019 3:29 AM (GMT 0)
My GI never told me about the enemas either and I only heard about them here! I've found Burnside foam helpful too.

I know it's hard to be patient when flaring -- it's such a hell!

Keep us updated on your progress! Good luck and I hope you'll be on the way to remission soon!

Post Edited (FlowersGal) : 10/19/2019 9:02:07 AM (GMT-6)

Posted 10/18/2019 7:53 AM (GMT 0)
Entyvio is the only biologic I tried that did anything. It stopped working after 14 months, but it was able to get me partly into remission. Then, with other alternative means and lifestyle changes, I was able to get all the way there. Unfortunately I flared not long after stopping Entyvio, so it didn't really help heal the underlying cause of my UC. I have had longer stints of drug free remission since then, but it's really hard to get myself there.

tl;dr Entyvio is the best one, in my opinion. Least dangerous, most effective.
Posted 10/18/2019 8:22 PM (GMT 0)
Entyvio was a gamechanger for me. I started it with 8-10 BMs a day and lots of blood. 2 years later, I still am taking it every 6 weeks and I am down to 1-2 BMs a day with barely any blood.

No side effects, the medication hasnt once negatively impacted me.

I wouldnt worry about when it starts, I've seen it starts working across a wide range. It only took a few weeks for me before I saw an improvement. It is a great drug, I'm hoping it can last me for years.
Posted 10/19/2019 7:29 AM (GMT 0)
Thanks so much for your positive responses, they’ve made me feel much more confident about it. I’ll keep my fingers crossed it works as well for me. Wishing you both good health x
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