Has anyone with UC stopped responding to Entyvio?

Of all the drugs I was put on (all that you list plus more) none worked except Entyvio , in fact I had bad reactions to most.

Entyvio worked well for about 6 months then tapered off and started the worst flare I ever had.

So what's my advice? In my experience when something didn't work or stopped working I said done, next! Only you can decide when that happens.

Another suggestion I have is Never, EVER think a second opinion is wrong or will hurt someones feelings. It's your body. Each time I got a second opinion I got the answers and information I needed to make an informed decision on my next course of treatment.

For me the battle was lost so I opted for a total proctocolectomy, which was absolutely the best medical decision I have ever made. I got my life back and no drugs. It wasn't all rainbows and unicorns, but looking back at where I was in the summer of 17 to now, I pick now.

Please ask if you have questions. I'll go back through my records and help you with anything I can.

I never responded to it. I have been on Humara, Entyvio, Stelara haven't responded to any of them.

Entyvio worked Gor years for my uc until it stopped working in early 2021. I have been on 4 Prednisone tapers while continuing mesalamine, but every time the taper reached about 15 mg, my symptoms increased again. After a long process to gain insurance approval I began Humira about 6 weeks ago. I have seen steady improvement after about the third week.

I’m currently in your shoes. I was (still am) on Entyvio, worked perfectly for 10 months then hit a flare & I can’t seem to get off prednisone. Dr isn’t quite ready to move me to Humira, so he’s got me on mercapuratine to see if both can work….but it takes up to 6 months for it to work. I’m worried because I can’t get my COVID booster or flu shot as long as I’m on the prednisone yo-yo. Are you having any side effects from Humira? Is it an infusion, shot it pill?

TY so much @msgtrebholtz for your encouragement. May I ask more info about your proctocolectomy? With an autoimmune disease, once the colon is removed, will it now just start attacking something else? I’ve had the ‘last resort’ in my mind from the beginning & the more I hear about it the more it doesn’t sound SO bad. I will say I’m truly scared about being on 6MP (if it even does work) for long term. I’ve been on prednisone for an 11 month yo-yo & back on another yo-yo since mid June (+ possibly another 5 months). I see GI for “next step” on Monday.

I actually don't recall what 6MP did to me. It seemed whatever I took did something, either physically or emotionally or both. I can tell you none of them did anything good. And on top of that I would always have a nasty flare after coming off them.

The only med that worked was pred, but I couldn't deal with the weight gain.

I have never heard of a migrating auto immune disease, but anything can happen!! LOL!

As for me the damage of 8 years of UC and the failure of every treatment took it's toll and led me to surgery.

I sought advice from the Centracare Chief of GI. He said surgery was my best bet, but he referred me to another Gastroenterologist whom I didn't get along with.

So my third second opinion was from an awesome surgeon who did my last scope. She said there wasn't much to talk about because there wasn't much colon left in places and because of my anal and rectal damage there was about a 1% chance that a J loop would work. Her words were "your best bet is a total with a Ken butt"!! So that's a complete removal of colon, anus and rectum with a permanent ileostomy.

After surgery is when all the fun begins. I'll tell you about it if you like. I will tell you it's not the best experience I've ever had, but the result made it worth it.

I went from living in the bathroom (almost literally) to working full time, working out at least 4 times a week and I run almost daily. My goal is a 1/2 marathon, which I look to reach in Rochester, MN at the Med City marathon next Memorial day weekend! It makes me feel good that my "victory lap" will take me right in front of the Mayo Clinic!! Doesn't get any better than that!

I had UC in2021. My doctor put me on Mesalamine. I think it helped a lot!!!

I recently started infusion therapy and feeling much better with diarrhea under control. It worries me that after reading your post that it can become ineffective. Please continue to post on what the GI doctor is going to do.

Good morning. I took entivo for numerous years. Worked well until it stopped working. I am currently on Xeljanz which works fantastically. I was on prednisone as a bridge also. I changed my diet and I think that helps tremendously. Good luck.

I hear your story and share a similar situation. I am 61 and have always been very healthy and active. About 18 months ago, I ended up in the hospital with pancolitis and since then diagnosed with Ulcerative Colitis. I believe what triggered my UC is a C diff infection, which I ended up having twice during this time. Since then it seems that my immune system has been in overdrive and does not want to shut off. My calprotectin levels have been very high (latest was 1586 and when I was in the hospital it was 2,635).

I started out on the Meslamine last year which only made me feel worse. My doctor placed me on Entyvio infusions this past February, but this is not working for me and she is now recommending Remicade. In between, the only thing that has helped with my symptoms is the Prednisone and we both know that this is only a temporary bridge. I'm really questioning whether another biologic is going to make a difference and truly understand the frustration of how long it takes to go through the process and once again, have months pass by with feeling like you are missing out on life. I do wonder if it makes sense to look at the gut microbiota and possibly surgery if there is too much damage. I am just starting to try the Microbiome Labs products for repairing the gut (a nurse who has Crohn's recommended it and swears by it). I will keep you posted if you are interested. I have always been conscientious about nutrition but like you, I am less than 100 pounds and it's been difficult to keep the weight on for the past year.

As a side note, I do feel that I am predestined for autoimmune. I had graves disease 30 years ago, but after having my thyroid dissolved 30 years ago and taking Synthroid since, I have had zero issues.

My feeling based on keeping track of my own body is that something triggers my immune system to go into overdrive and then for some reason, it does not want to shut off once the organ is damaged. First my thyroid and now this time, it was an infection in my gut that created havoc in my colon. This is totally my own opinion based on what I have experienced, but wonder if others feel the same way.

Would be interested to hear more about your experience and the direction that you are taking with your treatment options.