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Entyvio - Good stories please!!

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Ulcerative Colitis
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Posted 4/16/2018 6:08 AM (GMT 0)
I start Entyvio this week. Ive read so many horror stories I think I completely freaked myself out. I already have anxiety, i just made things worse. Anyone have any good stories to share?
Posted 4/16/2018 12:50 PM (GMT 0)
After being on Humira for nearly a year with very few results I recently switched to Entyvio and what a godsend it has been to me.
I get my third infusion next week and no real side effects other than maybe a little more wind , for the first time in over two years i am producing formed stools.
Posted 4/16/2018 1:05 PM (GMT 0)
I failed Humira also and while Entyvio hasn't gotten me to full remission, I'm 70% there and hoping to get on another medication to bridge the gap.

Unlike some people, I've had no ill affects from the Entyvio, no major side affects besides being tired for the 24 hours after the infusion. The infusion itself is much shorter than Remicade and a lot of people feel some type of benefit during the loading dosages (although full remission would take longer).

Just make sure you and your doctor give it time, while some feel good early, it can take longer for others. also talk to your doctor about adding a second medication to work with it. i think it's unreasonable to expect entyvio to give full blown remission by itself.

good luck with it, keep us updated on how things are going, especially since its a newer drug that people are starting to move towards.
Posted 4/16/2018 2:53 PM (GMT 0)
I didn't have any side effects from entyvio. It's fairly quick and easy. I wouldn't worry!
Posted 4/16/2018 6:03 PM (GMT 0)
Remicade obliterated my liver (allergic to it) - Had to switch to Entyvio. The loading doses made me a little tired/groggy, but other then that it's been great. My joint pain went away within 15 minutes of the 1st infusion, it was wild.
Posted 4/17/2018 6:42 AM (GMT 0)
I have no side effects from Entyvio, after over 2 years. For a few months I had a slight rash on my forehead which I thought might be Entyvio, but it disappeared over a year ago..

Also I never have any reaction on the day of the infusion and never have to use any of the various meds they give you with Entyvio in case of a reaction. I feel completely unaffected after an infusion. It's just a few hours out of my day every 8 weeks.

But it took many months on Entyvio to get the full benefit
Posted 4/17/2018 10:17 AM (GMT 0)
I started Entyvio at a time when I was in really bad shape. At that point prednisone was the only thing that gave me any relief, and my GI thought I was headed for surgery in short order. Well, after the second infusion of Entyvio, I noticed a big and immediate difference.

Before taking Entyvio I had severe UC through the end of my transverse colon, and my last scope (January) showed "no prominent active colitis" except for the last 20cm. Unfortunately, the last 20cm is still severe, and I am struggling with it mightily, but Entyvio has improved my disease to the point where I can function fairly well.

I've never had any side effects from Entyvio.

Good luck with your first infusion and stay optimistic. Sending good thoughts your way!
Posted 4/18/2018 11:51 AM (GMT 0)
I have been on Entyvio for 1.5 year now. I had never been on a biologic before so I cannot compare with that but I had no side effect. the first few infusions I did feel tired but nothing more. It did not bring me to remission but got rid of bloating and that was a great improvement. I have now switch to treatment every 4 weeks instead of every 8 weeks and I hope this will bring my symptom down further more.

I wish you best of luck with your treatment !
Posted 4/18/2018 8:27 PM (GMT 0)
With Entyvio they'll alter your dosage scheduling depending on how you respond to it? Currently I'm every 8 weeks, but I didn't know that they could change that.

Looking at their website they give you the little dosage calendar. I thought they mostly made adjustments with other biologics and if Entyvio wasn't doing it's thing within the proper scheduling they'd try something else?

I know they don't usually begin monitoring your blood levels (with the little blood kit from the manufacturer) until infusion #4....
Posted 4/18/2018 8:50 PM (GMT 0)
We've had success stories with Entyvio and UC posted on the forum. Often health insurance requires patients to first fail a tnf-alpha-blocking medication before trying entyvio out. So, that makes those trying entyvio a little more pre-disposed to be the most difficult, non-responsive cases that have failed a lot of other treatments leading up to entyvio (meaning a greater percentage of patients who are most likely to ultimately need a surgery for their UC). I bet entyvio will do well as many more UC patients have entyvio as his/her first biologic.

Yes, all biologics can be adjusted on infusion-frequency and dosage-per-infusion: entyvio: remicade, humira, simponi, etc. Most gasteroenteroligists are of the opinion "well if it worked for remicade, than it should for entyvio..." and that includes patients who get a response but it fades before the next, 8-week treatment. The entyvio concentration and antibody blood tests can help fine-tune dosage, as well.
Posted 4/19/2018 1:03 AM (GMT 0)
I 've been on Entyvio for almost 2 years with no side effects. Solid remission until the past few months when I see traces of blood and often have imperfect stools (no frequency or diarrhea though thankfully). Now on Uceris to hopefully get things back to normal.
Posted 4/19/2018 3:51 AM (GMT 0)
Have been on entyvio a little over a year. No reactions to the infusions other than dry lips the day of. I do not take an antihistamine with my infusion. I feel nothing during the infusion itself and it only takes 30 minutes. I did not try another biologic. I was steroid dependent before entyvio and immediately started weaning off the pred. By 4th infusion I was having only mild symptoms as the next infusion date neared, which we treated with canasa suppositories nightly and uceris foam at day as needed. I am currently enjoying remission !.!
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