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One year on Entyvio

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Ulcerative Colitis
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Posted 4/13/2018 12:44 AM (GMT 0)
I started entyvio last April. Following the infusion schedule I didn't notice major changes until after the startup and one maintenance treatment. After that, the changes became apparent and now I can verify it has been an answer to my prayers. It's like "where have you been all my life". Since that time I feel like a new person without the doubts and fears many of us suffer.

I can't say that it will definitely help everyone but I will say that if you have the opportunity to try it, by all means, don't hesitate. I've had no bad reactions but again this is my story so I can only relate my own experience. I hope this helps to relieve some of your doubts.
Posted 4/13/2018 1:02 AM (GMT 0)
Great news, I'm happy you're doing well on entyvio!
Posted 4/13/2018 3:28 AM (GMT 0)
Oh man, so glad to hear a success story. I have been reallllly struggling the last year and cant seem to get any kind of control with my first flare ever, its quite depressing. Good to hear there is some hope. If you don't mind me asking, What is the extent of your uc, how long have you had it, and have you tried any other medications?

My doctor is running some blood tests for me right now to check if i can start a biologic or maybe I can ask about Entyvio.
Posted 4/13/2018 4:22 AM (GMT 0)
I've had uc about 25 years. I started with sulfasalazine which offered some temporary relief, tried asacol with little success. There were several others which I really don't recall at this time but my last one before enytvio was Humera which did little or nothing. I believe it's primarily designed for some other issues and probably work well for them. Entyvio is exclusive for uc & maybe Crohn's.

I saw entyvio online through CCAA I believe and posed it to my Dr. He went along with it and I'm thrilled.
My experience leads me to adivse others to speak with their Dr.

It is expensive but I believe the manufacturer offers assistance if you meet their requirements. Check their website and don't give up.

Post Edited (valleyguy) : 4/12/2018 10:55:16 PM (GMT-6)

Posted 4/13/2018 12:48 PM (GMT 0)
That is good news,I was on Humira until recently and it did not work for me so my GI switch me to Entyvio and what a difference . Only 2 infusions so far but I feel like a new person.
Fingers crossed that the progress continues and even better things are ahead.
Posted 4/13/2018 4:12 PM (GMT 0)
Limey-- I will say from my experience that if you've had an initial response this early it will most likely continue. I also responded early and a year later am finally in at least symptomatic remission which is so great to enjoy life again.

Post Edited (FlowersGal) : 4/13/2018 8:29:54 PM (GMT-6)

Posted 4/13/2018 4:43 PM (GMT 0)
I am glad we are sharing success stories! They can be hard to find online. I've been keeping a journal of sorts on the "Starting Entyvio" thread for the past 2.5 years and wanted to share here, too.

I've had fairly severe pancolitis for 10 years, and you can see my medication history in my sig. It was hard to tell how early Entyvio kicked in (I was tapering prednisone when I started) but within a few months I was in total symptomatic remission, and clinical remission confirmed by a scope 9 months after I started treatment (the tech in the room asked my GI why I was even getting a scope it looked so good!). It will be 3 years on the drug in September.
Posted 4/13/2018 6:51 PM (GMT 0)
Glad to see the success! - I'm on infusion #3, and was taken off of my bridging meds. Symptoms are coming back slowly, but I'm not in pain and I don't have a horrible urgency. So I guess it's better than a full on flare. -_- Trying to hang in there.

Unsure at what point my GI is going to say "it's not working" or if they're just going to give it more time? I know it's a slow working infusion...
Posted 4/13/2018 7:26 PM (GMT 0)
It is slow going—I was told 14 weeks to determine if it’s working (and Entyvio site says this too) so at least try to the first non-loading dose. Mine likely took that long but was masked by the slow taper I did. Do you take any other maintenance meds? I still do 6 Colazal/day even on Entyvio.
Posted 4/13/2018 7:50 PM (GMT 0)

mkl11 said...
It is slow going—I was told 14 weeks to determine if it’s working (and Entyvio site says this too) so at least try to the first non-loading dose. Mine likely took that long but was masked by the slow taper I did. Do you take any other maintenance meds? I still do 6 Colazal/day even on Entyvio.

I take no other meds.
Posted 4/14/2018 2:34 AM (GMT 0)
I continued with Canasa and Uceris foam (along with my Apriso) as needed until about 6 months in. I was okay most days, but the closer to infusion time, I would have some mild symptoms. Nothing wrong with using maintenance meds to supplement, especially in the beginning.
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