Entyvio - when should it start working

My husband has UC. He was diagnosed in 2003 and succesfully managed his disease with Asacol for 8 years. Since 2011 he has been trying different medications with limited success. He was on Humira (weekly) and Medrol (8 mgs) with some success for 2 years. In the last 6 months or so the Humira wasn't working as well so his doctor stopped the Humira and put him on Entyvio He has had 3 rounds of treatments (0, 2 weeks and 4 weeks) with absolutely no impact. His condition has deteriated significantly. We met with the Dr today and agreed to stay the course through the next Entyvio treatment. My question: Has anyone taking Entyvio had it start working after the 4th treatment?

I just had my first maintenance dose today of Entyvio. I had a scope done in March that showed some healing had happened, but because I still had left sided UC (down from pancolitis) I continued to have plenty of symptoms. I am in the boat of trying to be patient as well.

Some have achieved a positive response to entyvio at the 10-12 week mark. A positive response, means the first indication that the medication is working, not a complete recover which takes even longer.

I hear the "magic" of Entyvio begins at week 14. But as others have said, it really depends on the person.

I was stuck in pretty awful flare for about five months. I can't tell you exactly when I felt like Entyvio began working for me. It was a slow process. I feel like I just very very very gradually stopped having the really bad symptoms.

Mind you I still get achey and what not (currently using Uceris as a little crutch until I'm deeper into my infusion schedule). But stools are fully formed, solid, no blood, there's no crazy urgency and I'm not in any pain. On infusion #4...Going to attempt to stop taking Uceris after my next infusion which is at the end of May...

Thank you all for your feedback. This makes me feel much better and more encouraged to stay the course.

IntestinalWasps - I'm so sorry to hear about your joint pain. Hopefully you have turned a corner and this crazy side effect will stay gone. So far my husband hasn't experienced any unusual joint pain with Entyvio. He does normally have joint pain / arthritis in a few joints. We had hoped that one of the side benefits of Humira was going to be an improvement in his arthritis but it had no effect either way. We'll be watching to see if this changes with Enyvio.

hi I am new to this forum. 36 y.o. female with colitis for 3.5 years. I have been on entyvio for 11 weeks. I have had a partial response, but I still have annoying symptoms namely abdominal pain which is keeping me awake at night (it is 5 am where I am now) and anything between 3-7 BMs per day. I am also off steroids for the first time in 2 years (was on 5mg when I started). My doc said most people have a full response by week 10/11 and he told me if I am tired of meds (because I didn't have a full remission for nearly 3 years) I can consider surgery. I can also consider switching to xeljanz. They also just started doing fecal transplants at my hospital, but the dr told me it isn't a miracle cure. Because of the christmas/new year holiday I probably have to wait until week 14 for the 4th infusion. I used to have pancolitis and now it's a (severe) distal colitis, so I remember how it was when it was 20 times worse than this. But also not sure what to do and when to give up on the drugs. I read that surgery can make you infertile. Not that i particularly want kids, but felt it might be wise to keep the option open for a few more years just in case. I have a very good dr that I trust, he is already my "second opinion" after I wasn't happy at another hospital. Thanks for reading.

Welcome to forum, but sorry to hear you are still suffering. Are you on any medications besides entyvio? I ask as often no single med is our 100% solution, rather combination-therapy often produces the best results (that is taking multiple classes of medications simultaneously).

Surgery has low odds of impacting your fertility. Here's a good read on it:

The Second European Evidenced-Based Consensus on Reproduction and Pregnancy in Inflammatory Bowel Disease
https://ecco-jcc.oxfordjournals.org/content/eccojc/9/2/107.full.pdf

Hi everyone, thank you so much for your replies!

ipoop (love your name btw) - Yes I am also taking mesalazine and azathioprine. And since I am one of those 11% of people who metabolises azathioprine into another enzyme which is toxic for the kidneys, they added allopurinol to stop that reaction from happening. I remember when we added the allopurinol, it was the first time in months that I didn't have abdominal pain. But I was still on 15mg prednisone at the time, and when i tried to reduce I flared again... then we tried infliximab, got down to 5mg pred before having a very nasty flare-up in between the 3rd and 4th infusion... then we doubled the dose of infliximab (10 mg/kg)... it improved the symptoms to a similar level as now, but I could not get off pred, so that was why I made the decision to switch to entyvio. I actually felt better after the 2nd infusion, but at that time I still had infliximab in my system and was still on 5mg pred.. and now that both of those are out of my system, I have more problems...

I also take VSL#3 but my dr says he's not yet convinced that it helps

I have played with diet a lot (haven't we all?) and I find it nearly impossible to work out what helps and what does not... the only thing I am strict about is being gluten-free. I could not follow SCD because I dislike or reacted badly to many of the foods she suggests...and skipping the carbs felt like starvation

Casey_LB, thanks I have tried mesalazine enemas (which did nothing) but not cortisone. That being said, I have severe osteoporosis in my spine after 2 years on prednisone, so I quite enjoy not having steroids in my system (although I know there are much fewer systemic side effects with enemas). It was my new dr who did the DEXA scan for the osteoporosis, that the last hospital never did. that's one of the reasons I decided to stick with him...

The fecal transplants are a clinical trial so there are some eligibility criteria for being admitted onto the study and I don't know if I qualify. Being a trial, I suppose there is also a chance of being administered placebo. That being said, it is comforting to know that it's potentially within reach, and indeed, I assume I can stay on my current medications for that.

Thanks again everyone really appreciate it.

ok thanks, then i should not give up hope yet I'm happy to hear it works for you and hope it stays that way!

I have been on Entyvio since January of this year. I get my infusions every 4 weeks because I am one of the 13% that developed antibodies. I was quite nervous about this fall as I typically flare up. I did a bit around Thanksgiving. I have been on steroids since last November-have osteoporosis in my spine as well. Still trying to wean off. Stuck at 4 mg right now due to what feels like adrenal issues. Anyways, not trying to get off topic. One thing my gi told me is that Entyvio is better at maintaining than healing. I think that is one reason why it was so slow acting for me. I was a mess when I went on it. It isn't quite enough for me by itself, but I don't want to go to anything else at this point to replace.

If I were you, with the holidays upcoming, I would not continue the taper until after your next infusion. I know the pred is hard, but so is not feeling comfortable during the holidays.

Ditto Flowersgal. If you have more pred, then stay at a higher dosage through the holidays to get by. And then get in touch with your doctor asap after the holidays.