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Any Entyvio failures?

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Crohn's Disease
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Posted 10/16/2015 4:56 PM (GMT 0)
Hi all,

I had a resection in November 2014, 1.5 feet of small bowel removed and 1.5 feet of colon removed. I have stricturing CD and started Entyvio after surgery to maintain remission. Almost a year later, I've been hospitalized twice for obstructions and still have a ton of symptoms. My GI says that Entyvio obviously isn't working for me since it seems to affect the colon more than the small bowel. Anyone else failed Entyvio?
Posted 10/16/2015 11:37 PM (GMT 0)
Hi there,

Sorry to hear about your issues on Entyvio. I too have been having this infusion for 14 months and in that time have developed 2 fistulas, and am due to have surgery in November to remove my colon and have a permanent ilieostomy. My GI Dr believes that this hasn't worked for me and he doesn't feel it has done what everyone thought it would. Not sure what m options are after surgery for maintenance for just taking each day as it comes.
Posted 10/17/2015 3:23 AM (GMT 0)
Unfortunately like all the biologics they don't have the best success rates. They certainly do fail a lot of us. I've gone through most of them, Entyvio and Stelera I think are the only ones I haven't tried yet. I'm having success right now with Remicade. I'm sorry to hear you are having a hard time, it's so hard when the medications just don't work.
Posted 10/17/2015 2:42 PM (GMT 0)
It didn't fail for me but it never did anything. I guess I am in the group who didn't respond. I have UC and a lot of people were saying it's AMAZING for UC. To be honest, I am not impressed with the results I've seen. Very few successes and a lot of those "successful" people, have symptoms, but consider themselves "better" than they were. 15k infusion to suffer with slightly reduced symptoms doesn't make sense.
Posted 10/19/2015 3:19 PM (GMT 0)
RedOctober - my story sounds similar to yours. I had a subtotal colectomy with ileostomy in April 2014 and started Entyvio July 2014 to maintain the remission that my surgery gave me. I was just in the hospital last week with an obstruction. My two fistulas that I had for years just closed a few weeks ago though, so there's that. Don't know if I'm going to switch from Entyvio or what. Aside from the one stricture near the stoma that caused the obstruction (and some ulcerations near it), my CT scan and scope came out completely clean.

Side note - does anyone else think it's weird that after years, all of a sudden my fistulas closed and then immediately after I have my first ever obstruction? Can't be coincidence.
Posted 10/19/2015 5:10 PM (GMT 0)
I was diagnosed with ulcerative colitis 16 years ago. After four years of struggling through flare after flare - and gaining a ton of weight on prednisone, (not to mention a terrifying bout of pancreatitis from 6MP) I decided on surgery to remove the entire colon and had 'J Pouch Surgery.' I developed chronic pouchitis after that and had been on daily Cipro & Flagyl, along with Lomotil 2x a day. I continued to experience flares and obstructions (two surgeries) and last year, was sicker than ever. Inflammation in the small intestine was discovered, so now I have Crohn's with chronic pouchitis. Tried both Remicade and Humira and neither worked. I was put on Entyvio six months ago - after the first three infusions (uploading) were completed and the first 8-week influsion was done, I felt better than I had in years - I had forgotten what it was like to actually feel good. That lasted for about three weeks and then faded away. The Entyvio has helped reduce the frequency of trips to the bathroom for the most part - I can sleep most nights without having to get up during the night - but that's about it. I'm back to dragging myself around.
Posted 10/19/2015 5:22 PM (GMT 0)
Was on Humira for 4 years, the first 2 years i was on remission then developed antibodies and it stopped working. Have been on Entyvio since March: 5 infusions with little progress. They keep saying to wait since Entyvio is slow acting but frankly I have not seen any evidence that it is working. The office of 5 GIs that I go to has 15 Entyvio patients and 10 have seen improvements, the other 5 no improvements at all.

I am going to go for the 8 infusions that I am approved for. We are considering Stelara as a last resort but I have seen reports of Stelara failures as well.

Not too many options beyond this: the Remicade Cymzia options work with anti-TNF factors similar to Humira so it was recommended that I don't try those at all.
Posted 10/19/2015 7:04 PM (GMT 0)
I have had no luck with any of the biologics. I have done them all. In fact I am having the rest of my colon removed in a few weeks. My stricture and RV fistula got worse on entyvio.

In regards to you fistulas closing and the obstruction, my experience with that typically meant I was inflamed again and the swelling closed the holes.

Hope they find something that works for you.
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