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Entyvio after Remicade and Humira

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Ulcerative Colitis
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Posted 11/15/2015 2:19 AM (GMT 0)
I am looking for the experience of people with severe or moderate UC who did not respond to Remicade and Humira before trying Entyvio. I was non-responsive to Remicade and Humira, and Entyvio looks like the next thing to try. No major side effects from either Remicade or Humira; they just did not do much.

Has anyone else done this route?

Thanks,
Posted 11/15/2015 2:23 AM (GMT 0)
I had the same experience with remicade, simponi and entyvio :( I am sure many people have had different experiences.
Posted 11/15/2015 3:17 PM (GMT 0)
The initial clinical studies for entvyio included a significant number of patients who had failed other biologic treatments available at that time. The clinical results were quite good, as a whole for entvyio. So that's certainly encouraging. None of the medications work for 100 percent of patients though. It's usually in the 60 percent range for a response.
Posted 11/15/2015 3:25 PM (GMT 0)
Entyvio had very good results for UC pts in clinical studies.
It is totally different than other biologics as it is gut specific and infusion reactions are not very common.
Because it is a gut specific it will not help with extra intestinal manifestations of ibd whereas other anti tnf medicines will. But if you didn't respond to humira or remicade than they didn't either help extra intestinal manifestations.
Good luck
There is also simponi which is anti tnf but I think it's best to try entyvio as two anti tnf drugs failed you
Posted 11/16/2015 10:01 PM (GMT 0)
My husband was diagnosed with severe left-sided UC in 2013. Remicade worked for about five months, and then he developed antibodies. Tried Humira (every two weeks, then every week) and it never seemed to work. Tried entyvio. After six infusions, it was not doing anything at all to help. The only side effect of the entyvio was super-extreme fatigue. Probably heading towards surgery since the only thing that helps is prednisone. Considering participating in the Stelara study that has just opened up to UC sufferers. Concerned that lack of responsiveness for other biologics may mean odds of success on Stelara are low and not sure can tolerate steroids much longer.
Posted 11/17/2015 1:38 AM (GMT 0)
suzy, I was in the same situation and I had surgery. it has been a good decision in my case. Right after the first step, I was able to live life pretty normally. It is definitely a big step and it's scary but it could give him his life back. After trying one thing after another and failing all of them, I was so thankful to go on to something that actually did something for me -- and very quickly. Surgery takes a long time to get from beginning to end but you don't have to stop your life for the ileostomy. I remember with Remicade, i was on hold for months, waiting for a response. Same with Simponi. Then again with Entyvio... All that time lost. I might as well have had surgery years ago. I was a total non-responder. The fact that he had a little response to remicade might mean he has some chance with another biologic. I felt like nothing was going to work for me. Even if it worked for 90%, i would have been in the 10%... Even if it worked a little, how long would i get, a few months, a year? It's not worth it, i want to be off meds and healthy forever if possible. Life is short, I don't want to spend mine worried about UC.
Posted 11/17/2015 5:25 PM (GMT 0)
Casey, I had the same experience with Remicade and Humira, and have recently started Entyvio. My third infusion is next Wednesday.

I didn't feel any differently after my first infusion. I was extremely tired for two days following my second infusion, but my symptoms improved pretty dramatically. I've gone from 12-15 BMs a day to 6-8, all solid with no blood or mucus. Urgency is still my biggest issue, but it has improved some.

I can't attribute it to Entyvio for sure yet, since I'm still on prednisone, but I'm optimistic since I started tapering before my last infusion.
Posted 11/20/2015 1:21 AM (GMT 0)
DRR,
Thanks for the report; that's encouraging. How long between infusions?
Posted 11/20/2015 11:37 AM (GMT 0)
My first infusion was October 15, my second was 2 weeks later, and my third will be next Wednesday (November 25). After the next infusion, I am supposed to go every 2 months.

I really hope it is working; I really need to get off of and stay off of prednisone. As I mentioned, I am currently tapering (from 40 mg/d), and I've been at 10 mg/d for the last 2 weeks. For me, this is usually where the wheels fall off, so I'm really happy that I'm doing this well.
Posted 11/20/2015 1:49 PM (GMT 0)
i failed Remacade and Humira have been on Entyvio for 11 months am doing much better it has given me my life back turn
Posted 11/21/2015 1:50 AM (GMT 0)
My son's Dr said Entyvio takes 3 -6 months to kick in? Is this true in other's experience?
Posted 11/21/2015 1:55 AM (GMT 0)
Yes it took me 6 months for any improvement. I still have accidents after eating the wrong foods . This UC is awful but we have to take it day by day turn
Posted 11/21/2015 1:59 AM (GMT 0)

VinniesMom said...
My son's Dr said Entyvio takes 3 -6 months to kick in? Is this true in other's experience?

My GI told me that if I didn't respond within 10 weeks or so, that i probably wouldn't. I didn't expect much because I never responded to anything. At that point, when I had no positive improvement, I decided to have surgery instead of sticking it out with entyvio.
Posted 11/23/2015 2:48 AM (GMT 0)
Everyone is different. Was on Humira for a year and a half. Did ok! Needed to use it weekly. Stopped working. Have been on Simponi for almost 2 years now. Except for IBS symptoms, doing much better.
Posted 11/23/2015 7:12 PM (GMT 0)

suzy-q said...
My husband was diagnosed with severe left-sided UC in 2013. Remicade worked for about five months, and then he developed antibodies. Tried Humira (every two weeks, then every week) and it never seemed to work. Tried entyvio. After six infusions, it was not doing anything at all to help. The only side effect of the entyvio was super-extreme fatigue. Probably heading towards surgery since the only thing that helps is prednisone. Considering participating in the Stelara study that has just opened up to UC sufferers. Concerned that lack of responsiveness for other biologics may mean odds of success on Stelara are low and not sure can tolerate steroids much longer.

Suzy,

Is your husband on 6-mp or Imuran? I didn't see it listed in your signature. They can help prevent antibodies.

Have you considered Cyclosporine? It usually works within a few days of being on it. I've taken it twice with good results but you'll need a maintenance med like 6-mp for after he's off it.

I'm currently on Cimzia and it works great for me (within a couple of days) except that I get the same side-effects that I get from all the other anti-tnf meds, neuropathy. My GI is currently trying to get my insurance company to approve Stelara for me, he says it works quicker than Entyvio (which I haven't tried yet) so I wanted to start off with Stelara.

Has your husband tried any antibiotics for his UC?
Posted Yesterday 10:08 PM (GMT 0)
I am currently in a similar situation as Casey. I have been on almost everything and after some short or long time, the UC comes roaring right back.

I have been in clinical remission 3 times and histological remission one of those times. All three times I was medication free. I have had 3 stays in the hospital after flares and each one has been longer than the previous. I live far from family and old friends and tried support groups in my area, but they were no help. I'm not totally heartless, this is a terrible disease at any level, but most of those people couldn't fathom what severe is like.

Back on track, during my last hospitalization, they tried all the usual suspects: steroids, cipro, asacol, 6MP. Also, my insulin and potassium went crazy and had them supplemented. I was upgraded from morphine to dilauded and that's when they brought up Remicade. Worked great for about 8 months and then symptoms came back. They upped the dosage and frequency, no help. Now I've been switched to Entyvio and have had 2 treatments, no change so far. Waiting for magical week 10 I keep hearing about. I have been flaring since July 2014 with all our familiar friends: >10 bathroom trips, d, b, m, not sleeping, lost 40 pounds, abdominal pain, severe urgency, accidents (even at home), self-alienation, cancelling plans. I have put off surgery for so long, but its the only thing left after this. I won't b/s this crowd, I'm completely freaking out.

@Casey - the nurses at my infusion center are INCREDIBLE. They keep me posted on all the info they see and hear. One common thing is people coming off Remicade respond more slowly to Entyvio than people who go on Entyvio directly. Sometimes up to 6 months. So you, me and all the people like us have to just soldier on, faith disappeared a long time ago.

Ask me anything, I'm an open book.

-J

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
37yo male
Dx - August 2000, severe pancolitis
Currently on: Entyvio, 6MP, hyosciamine, Lomotil, NyQuil, Benadryl, low residue diet.
Past medications: Remicade (5mg/kg q 4 weeks), Asacol, Lialda, long term prednisone (40mg), Pamine, immodium, oxy, Rowasa (enema), suppositories
Posted Today 1:49 AM (GMT 0)
Going medication free between remissions might be why you flared... Remaining compliant to your maintenance medications is proven to provide longer remissions and fewer and less severe flares.

Good luck with entvyio, 10-14 weeks on it. It's a very slow working medication. If it works, stay on it!
Posted 11/30/2015 5:20 PM (GMT 0)
Oh, I'm sure you're right! Unfortunately, compliance was not my choice. It was loss of insurance that triggered it. Not sure how many people know, but Lialda was nearly $50/day retail. Absolutely insane. 6MP was cheap cause its been around forever.

Good luck to you too!
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