Has anyone with UC stopped responding to Entyvio?

Posted by dval @dval, Jan 8 9:17am

Hi! Diagnosed with UC in 2017, which became severe and fulminant by 2018. The biologic, Entyvio, worked well and got me into remission for 13 months. In October, the day after my annual flu shot, I started bleeding again. GI doc suggested Entyvio infusions every 4 weeks, instead of every 8 weeks, which had been working. Took oral prednisone as a bridge until bleeding stopped 5 weeks later. This “dose intensification” has failed, as the bloody diarrhea returned with a vengeance!!! I just had 8 labs done (3 blood and 5 stool) to rule out anything else. GI doc has prescribed oral prednisone again as a bridge until we come up with Plan B. Right now I am terrified at how quickly this is escalating and don’t know what to do!!! I know there are other biologics out there and even an oral, but what are the safety profiles? Has anyone stopped responding to their biologic and then tried something else that worked? I am 63 years old and had been in excellent health before this horrible disease took over my life. Any help would be greatly appreciated! Thank you!!

Hi @dval, I know that @skolotilin started a different medication because Entyvio stopped working for them. Perhaps they can share their story with you. @dval, did your physician suggest any other medication besides prednisone to bridge the gap? Have you tried Humira or any other types?

Reference info: Duration of Crohn’s Disease & Response to Vedolizumab (Entyvio): https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/duration-of-crohns-disease-response-to-vedolizumab-entyvio/

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Thank you. My ulcerative colitis was well controlled for 13 months, while using Entyvio. A colonoscopy showed clinical remission and even improvement in the mucosal lining of the large intestine. One day after a flu shot, I started to bleed and flare. It became worse quickly, and GI doc prescribed steroidal suppositories, which did nothing, oral budesonide, which didn’t help and finally oral prednisone, which worked quickly to stop the bleeding. He also tried “dose intensification” increasing the Entyvio infusions to every 4 weeks instead of 8. Within 3 months I started to bleed again, have a lot of pain, and the symptoms worsened by the day, reaching 10 horrible bloody diarrheas within a day and waking up in the middle of the night with same! So, doctor ordered 8 labs (3 serum and 5 stool). Still waiting for stool results, but in the meantime, he prescribed oral prednisone again (he hates prescribing it as much as I hate taking it). I was fulminant at my worst and in fear of a colectomy. So today at 4 pm (telemed) we are discussing other options – He suggested Remicade, Humira or Stelara. I demanded that he help me choose, as I need an educated and clinical opinion. Biologics scare me; they all have side effects, but the UC symptoms are far worse to live with. So I am hoping that whatever we choose will be approved by my insurance (another obstacle) but I am hoping for the best. This disease is frustrating and unpredictable!! It came out of nowhere at the age of 60 and for 3 years, I have lived with it and have done all I can to control it. I had always been healthy and ate a good healthy diet, never smoked, always very active. So for almost 2 years, I have followed a plant based diet (lots of clinical evidence that it helps with UC) and I was doing well for 13 months. GI doc also checked Entyvio trough levels when I first started flaring in October and I had antibodies, so I must have just stopped responding to the Entyvio, which I understand is not uncommon. I’m not thrilled that I have to start a new drug, loading doses and all the other stuff, but what choice do I have? I know the Remicade is a LONG infusion and that the Humira and Stelara are subcutaneous after the first infusion, but my biggest concern is safety. They all have side effects, but I’d like to get some quality of life back…. I am hoping he can help me with the decision and best choice for me. Thanks again!!

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Has anyone had good or not so good results with Stelara for UC? I had been in remission for 13 months with Entyvio and stopped responding. Dr. tried dose intensification, increasing Entyvio dosing to every 4 weeks, but it didn’t work. So, back on oral prednisone, bleeding horribly for weeks, waiting to start Stelara on February 2nd. I am terrified and was wondering if anyone can share their experience. Remicade was also recommended. Any insight would be greatly appreciated!!!

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Right side discomfort. What foods to try. Three yrs ago took on this disease. Went into remission for one yr. ten moths ago started again now on entyvio fourth treatment. I think it’s helping but now having pain in my right side of my stomach and close to belly button and I’m not yet in remission . Anything I eat I have difficulty with . Can anyone discuss with me on this?

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@rfan4433 Welcome to Mayo Clinic Connect, a place to give and get support.

Treatment was working for almost two years for ulcerative colitis but now unfortunately it is not. You want to connect with members like you.

You'll notice that I moved your question to a related discussion. I did this so you could meet with similar members like @skolotilin @dval, in a central location. You may wish to scroll through the past comments in search of information and connections with members.

Below I have linked older discussions related to this topic. You may also wish to scroll through and read these posts.
– Constipation with ulcerative colitis https://connect.mayoclinic.org/discussion/ulcerative-colitis-250dac/
https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/
– I’d like to meet others with ulcerative colitis I’d like to meet others with ulcerative colitis

May I ask if your provider has suggested a dietitian to manage symptoms?

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@erikas

@rfan4433 Welcome to Mayo Clinic Connect, a place to give and get support.

Treatment was working for almost two years for ulcerative colitis but now unfortunately it is not. You want to connect with members like you.

You'll notice that I moved your question to a related discussion. I did this so you could meet with similar members like @skolotilin @dval, in a central location. You may wish to scroll through the past comments in search of information and connections with members.

Below I have linked older discussions related to this topic. You may also wish to scroll through and read these posts.
– Constipation with ulcerative colitis https://connect.mayoclinic.org/discussion/ulcerative-colitis-250dac/
https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/
– I’d like to meet others with ulcerative colitis I’d like to meet others with ulcerative colitis

May I ask if your provider has suggested a dietitian to manage symptoms?

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I have been following a whole food plant based diet for nearly two years, which has been wonderful (no meat, daily or processed foods). The 13 months in remission was blissful. This past flare has been weeks of hell, with more weight loss, pain, and hospitalization for severe dehydration. They also gave me IV steroids. I started the Stelara 3 weeks ago (loading dose infusion) and I am hoping the symptom improvement is from that and not the prednisone, which I have tapered down to 25 mg daily thus far. I have gone from 10-16 daily, bloody mush BMs to 2-3 daily formed stool without seeing blood for 2 days. I have also stopped losing a pound a day (can't afford to lose anymore weight). I was also too weak to take my daily walk, which I have resumed for 5 days now, so there is improvement and for the first time in weeks, I am hopeful….

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Hello all,

This may not be what you want to hear at the moment, but I'll let you know anyway just so the thought process goes there a bit.

Anyway, I had UC for about 8 years and tried one of each type of pill, suppository, and biologic. None worked for me except Entyvio and for only a short time. If anything I turned out to be the poster child of "in the unlikely event of this side effect…".

Long story short and the part you may not like: I had a total proctocolectomy with permanent ileostomy done in 2017. I will tell you that this easily one of the BEST decisions of my life. I will not lie to you that it isnt the most pleasant initially, but once you settle into a routine and figure out how and what to eat you will be in a much better place.

In the four years since my procedure I am more healthy than I had been in years. I went from terrified to be out of sight of a bathroom to training for a half marathon. I have gotten to the point that I change my appliance about 3 or 4 times a month, I take NO meds (I do take a multivitamin, B complex and iron) and eat almost anything I want.

If that becomes a topic you need to explore i would be more than happy to tell you more of my story and let you in on a bunch of stuff to do beforehand to make "bag life" easier. Respond here or PM me.

Jason

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@msgtrebholtz

Hello all,

This may not be what you want to hear at the moment, but I'll let you know anyway just so the thought process goes there a bit.

Anyway, I had UC for about 8 years and tried one of each type of pill, suppository, and biologic. None worked for me except Entyvio and for only a short time. If anything I turned out to be the poster child of "in the unlikely event of this side effect…".

Long story short and the part you may not like: I had a total proctocolectomy with permanent ileostomy done in 2017. I will tell you that this easily one of the BEST decisions of my life. I will not lie to you that it isnt the most pleasant initially, but once you settle into a routine and figure out how and what to eat you will be in a much better place.

In the four years since my procedure I am more healthy than I had been in years. I went from terrified to be out of sight of a bathroom to training for a half marathon. I have gotten to the point that I change my appliance about 3 or 4 times a month, I take NO meds (I do take a multivitamin, B complex and iron) and eat almost anything I want.

If that becomes a topic you need to explore i would be more than happy to tell you more of my story and let you in on a bunch of stuff to do beforehand to make "bag life" easier. Respond here or PM me.

Jason

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Thank you so much for your willingness to share. I have gone there mentally when the flares get so bad, I don’t know if I can get through another day. I was diagnosed at the age of 60, having no health problems and didn’t even know what UC was!!! I never smoked or drank, ate healthy and exercised my entire life. When this presented, it was a shock and took several months to diagnose. It quickly went from proctitis to pancolitis – the most severe form of UC. I adopted a whole food plant based diet, walk 5 miles a day and am currently on the biologic, Stelara. This last flare has been going on for weeks, and I am back on high doses or oral prednisone, waiting for the Stelara to work. The Entyvio only worked for 13 months and I was devastated! This disease has taken so much from my family and me. It has robbed us of so much! There are days I feel useless and miserable! I was an active productive human being and this last flare put me in the hospital, severely dehydrated and barely 100 pounds. The pain in my husband’s eyes was as bad as my physical pain, as he helped me in the hospital bathroom the 16 times I needed to go and it was just raw blood. It was one of my lowest points, being in a hospital in this covid world, too weak to stand up. I honestly don’t know how much more I can take…. My doctor is already talking about Remicade if the Stelara doesn’t work. I don’t know how many times I can be on this roller coaster of hell with this disease! It’s terrifying to leave the house and I feel so vulnerable having this autoimmune disorder in today’s world! We have worked and sacrificed our entire lives and retirement has brought this… I do see a therapist because there are days during the flares where I am overwhelmed by the fear of what’s next. The sleepless nights, the endless bathroom visits, the blood, weakness and the way the steroids make you feel. We have spoken to a colorectal surgeon in case I become an emergency surgery, as the UC has been fulminant a couple times. I would hope I would not be in that situation and that it would be something we can plan (as best as one can). I hope and pray for a cure for this debilitating disease, but I doubt that will happen in my lifetime. I am on a couple support sites for people with IBD because they get it…. So right now, I don’t know if the Stelara is working. The symptom improvement I have seen the past week may just be the prednisone (less bathroom visits, less blood, formed stool and I have finally stopped losing weight). Again, I thank you for your willingness to share!! I’m so glad you’re in a good place with all you’ve been through!

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I know it hasn't been very long, but how are the new meds going?

Please let me know if there is anything else I can do for you. Keep your chin up!

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I don't have UC but I've taken an interest because my father died from it. I recommend you read or listen to this book:
"The Clever Gut Diet" by Michael Mosley. Invaluable information he's collected from current research. Michael Mosley is a BBC health reporter and is entertaining to listen to.
I'm doing his recommendations and they are working well. You may be unfamiliar with fermented foods but believe me, they are delicious. I'm eating Kimchi and Natto everyday now.
I don't know where you are from but if close to Minneapolis you can find Kimchi at Costco and Natto at United Noodles – 2015 E 24th St, Minneapolis, MN 55404

Good luck
PS
If you're interested in slightly more detailed information; I recommend this book: 'The Longevity Diet" by Valter Longo.
Both available at Google books, easy download.

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@msgtrebholtz

I know it hasn't been very long, but how are the new meds going?

Please let me know if there is anything else I can do for you. Keep your chin up!

Jump to this post

Thanks so much for checking in…. I am cautiously optimistic, but know how quickly this can go south. I have tapered down to 15 mg daily prednisone; plan to go to 10 today or tomorrow. The Stelara most likely is working, as there is much less blood, formed stool and frequency is 2-3 times daily (big change from 16+). I am watching, recording and plan to see another colorectal surgeon, to be prepared. The fact that I stopped responding to Entyvio makes it more likely that I will stop responding to other biologics. I am giving the Stelara a chance, and my understanding is that if I stop responding to that, Remicade would be next. If the side effects are too severe, I know the surgery would be the next step. These biologics have different mechanisms of action, but all have dangerous side effects! The thought of not taking biologics is appealing. I hate that I am immuno-compromised, especially in this Covid world. This is a horrible disease and I know in my heart that I have done everything possible to treat it. The plant based diet certainly helps, but when it’s this severe, there’s nothing more you can do…. I have come to terms with the severity of this chronic illness and also that the surgery would represent freedom. It would free me from the drugs and their side effects and from being terrified to be away from a bathroom. I appreciate your willingness to share your experience! I hope you’re well and enjoying your life! Sometimes we have to bite the bullet and make tough decisions that are right for us because we’re living this hell…. Thank you again; I will keep you posted!

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@tighecrea

I don't have UC but I've taken an interest because my father died from it. I recommend you read or listen to this book:
"The Clever Gut Diet" by Michael Mosley. Invaluable information he's collected from current research. Michael Mosley is a BBC health reporter and is entertaining to listen to.
I'm doing his recommendations and they are working well. You may be unfamiliar with fermented foods but believe me, they are delicious. I'm eating Kimchi and Natto everyday now.
I don't know where you are from but if close to Minneapolis you can find Kimchi at Costco and Natto at United Noodles – 2015 E 24th St, Minneapolis, MN 55404

Good luck
PS
If you're interested in slightly more detailed information; I recommend this book: 'The Longevity Diet" by Valter Longo.
Both available at Google books, easy download.

Jump to this post

@tighecrea Welcome to Mayo Clinic Connect, a place to give and get support.

My condolences on the passing of your father. Due to this unfortunate situation, It sounds like you have information to share.

May I ask if Entyvio is the reason you joined Connect?

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