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ENTYVIO (vedolizumab)

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Crohn's Disease
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Posted 10/28/2014 12:45 AM (GMT 0)
Im sure there is a post about this vedolizumab. I was just told today the I built antibodys to Remicade. DR wants to switch me to vedolizumab. Just want to get peoples feed back on this, and if your on it how you are feeling.
Posted 10/28/2014 11:38 AM (GMT 0)
There are a bunch here taking Entyvio, including myself. General consensus seems to be that it takes a while to start working. The jury is still out for me, I've been on it for 16 weeks and nothing yet. Here is a thread with some discussions https://www.healingwell.com/community/default.aspx?f=17&m=3146936
Posted 10/28/2014 11:44 AM (GMT 0)
I'm looking into entyvio also as all other options haven't worked for me. I recently joined a Facebook page called Entyvio Warriors. I've read mixed reviews but it's a great place to ask questions. Hope this helps!
Posted 10/28/2014 2:23 PM (GMT 0)
I've been on Entyvio for three months. I'm taking it for maintenance, not to induce remission, so I honestly don't know how well it's working. I'm still in remission, so I guess it's working in that respect. No real side effects other than some fatigue the day of the infusion. Oh, and the allergic reaction I started having as the infusion ended. That's rare though, and they're pre-medicating me next time. Definitely have some patience, Entyvio can take a long time to start working, 10-12 weeks. There are a lot of people taking Entyvio on the UC board, so you may want to look there for some more info.
Posted 10/28/2014 9:59 PM (GMT 0)
Again, built antibodies to remicade, DR want to this Entyvio and 6mp combo. Scared that it might not work at all. at least when I get Remi the first 4 weeks are good weeks. I would love to know more people on this and how they are doing. My DR said the trails for this drug were really good.
Posted 10/29/2014 8:45 PM (GMT 0)
Just going through posts and from what Im gathering most of the people on here have not had success on ENTYVIO. Not getting that warm fuzzy feeling that Dr was making me feel. Now I feel like second guessing myself, and now im belly aching over this.
Posted 10/30/2014 1:13 AM (GMT 0)
Entyvio is a new drug. I assume the people here (myself included) have only recently started the treatment. So with that in mind, it really isn't fair to say people here are not finding success with Entyvio. The reality is it's still early for many of us taking Entyvio to say the drug works or doesn't work. I, myself, have not noticed any changes and my 3rd infusion is around the corner. I try to stay hopeful... because sometimes I feel hope is the only weapon I have against Crohn's.

Fignewton212- I say, even if Entyvio doesn't work for many of us, you shouldn't dismiss this new drug. It might just work for you, right?
Posted 10/30/2014 1:14 PM (GMT 0)
Fig - did you read any of the posts on the UC board? Most of them started taking Entyvio the same time as me, in July, because that's about the time that it first became available. A lot of them are seeing improvement now. Entyvio works very differently from Remicade/Humira/Cimzia. It takes a long time to start working and the improvements are gradual. Yes, no one is saying "Miracle cure! I feel perfect!" But people are doing better on it than they were off it. The recent trial results following people at 52 weeks and 104 weeks showed continued improvement as time went on, and, yes, even remission for many.
Posted 11/1/2014 9:20 PM (GMT 0)
thanks for the feedback.......................
Posted 11/6/2014 4:17 PM (GMT 0)
Just to add my experience so that everyone doesn't think that Entyvio takes forever across the board...

I just had my second infusion and have already seen some changes. Don't get me wrong, it's no where near a complete turnaround, but there is some def. relief. Frequency is down, stool is more formed, appetite is returning...etc.

I had just been removed from taking Remicade since it was only helping the symptoms, but not improving the condition of my colon...go figure.

Any how...there is hope and another sign that things are better is that I actually typed that. Not sure if that would have been the case a few weeks ago.
Posted 11/6/2014 4:48 PM (GMT 0)
I think people are just not being patient enough. The first 3 doses are loading doses. It took 3 doses but I got off of Prednisone. I had my 4th dose about a week ago. It's working. I may not be in remission but I am able to function go to work and live a semi normal life.I think I will still keep getting better. Everything I have been told is that it takes a long time to work. Longer than other meds
Posted 11/8/2014 3:28 AM (GMT 0)
The insurance company has just approved this drug for my daughter....she gets her first infusion on Monday........finger s crossed....hope this works!
Posted 11/8/2014 1:19 PM (GMT 0)
I am having my second infusion this coming week. Trying to stay optimistic & positive as I know the consensus is that entyvio has a very slow mode of action. Before my first infusion they gave me an infusion of benedryl, then the IV bag of Entyvio. This was just in case I had an allergic reaction. I do realize that one can get an allergic response days or even weeks later. So far so good.....

It would be great if all the Entyvio warriors on this site continue to share experiences consistently. I know someone mentioned that there is on facebook Entyvio warriors, but I am not on facebook(Can you believe that... I am probably one of the few holdouts not joining...)

I was also wondering is anyone on Entyvio along with an immunosuppressive? My Dr. wants to add 6 MP at some point.
Posted 3/7/2015 5:21 AM (GMT 0)
I have been on Entyvio since Oct 2014 & haven't seen any great improvement. Although my BMs went from 25 to 15 and bleeding stopped. Dr said that it should work after 14 wks so in Dec he put me on Methotrexate too. Currently taking those 2 plus Apriso, and tapering off of Prednisone. I was doing better with all of this down to 6-10 a day, no bleeding, & becoming formed until I got down to 15 mg prednisone then starting flaring up again. Now doctor wants to remove my colon :( feeling like he is too quick here & not giving my body enough time to adjust. I have been on prednisone for 3 yrs at 30mg.
Posted 3/7/2015 9:15 PM (GMT 0)
Sharbear I am in a similar sit. Started Entyvio in sept was on pred. 30 mg/d and 6 mg entocort and augmentin. My main problem is a pa fistula. 4-6 BM /d but sometimes more and sometimes uncontrollable.
Was unable to reduce pred. Doc added MTX inj 1 ml/week in dec.. Said if that doesn't work have to consider surgery. I said no way there are a lot more options.
E.g. Try Remicade again which failed after 9 years of remission. Then I would try LDN, elemental diet, or live with what I got until something better comes along.
Did my homework on treatments and next time asked her about Prochymal a yet unapproved stem cell drug. She said I would be a candidate and it is now open label but have to keep trying what we're doing first. Also discussed possibility of increasing ENTYVIO to every 4weeks.
Anyway I am doing much better on lowering pred down to 10 entocort down to 3 and symptoms somewhat improved but more fatigued possibly from MTX.
BOTTOM LINE if life is tolerable and you don't have a lot of scar tissue (I have none) avoid surgery as long as possible and hope for new treatments meanwhile try everything else you can think of esp diets like PALEO and gaps. Vit d etc.
Also surgery is not a cure for Crohn's and removing your colon does not guarantee you won't get small bowel Crohns so all you end up doing is trading one nightmare for another. They say it only happens in 10% but I don't have any confidence in that. Know about too many people who had colon removed and got small bowel CROHNS.

Post Edited (Old Cronie) : 3/7/2015 2:18:16 PM (GMT-7)

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