Has anyone with UC stopped responding to Entyvio?

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.

So sorry to hear what you’re going through but I understand completely! I am also happy to report that the Remicade is working for me!!! I had scheduled a proctocolectomy for last November and my GI doc got approval for me to take the higher dose of Remicade every 4 weeks. My weight was too low, so he had to battle with my insurance company to get authorization for the 500mg infusion every 4 weeks! My calprotectin was 1280 and I was on 60 mg of prednisone daily! So, it has been over 8 months and things are better than they have been in a long time!!! The biologics have different mechanisms of action, so they work differently to reduce the inflammation. Remicade is a TNF inhibitor and has been around a long time. I just had my annual colonoscopy and there has been mucosal healing and improvement!!! So don’t give up!!! There have also been several more drugs (orals) approved in the last 3 months, so for the first time in a long time, I am hopeful!!! Don’t be afraid to try Remicade - it changed my life!!! I wish you the very best!!!! ❤️

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!!

My husband had UC and ended up only being able to take prednisone. He started getting infusions of Entyvio in March of 2016. July of 2017 he passed away from T-Cell Lymphoma which Entyvio had caused.

I've been on Entyvio since 2019 when first diagnosed. Seems to be failing me for the last 2 years but colonoscopies look great. Going back to Mayo in August. I'm allergic to prednisone so can't use steroids. Is anyone going thru the same thing? Any ideas. I know everyone is different but Doctors are missing something. Bloated and cramping most of the time. Diarrhea is getting less severe on low residue diet. No eggs, lettuce, or lots of other foods.

I've been on Entyvio since 2019 when first diagnosed. Seems to be failing me for the last 2 years but colonoscopies look great. Going back to Mayo in August. I'm allergic to prednisone so can't use steroids. Is anyone going thru the same thing? Any ideas. I know everyone is different but Doctors are missing something. Bloated and cramping most of the time. Diarrhea is getting less severe on low residue diet. No eggs, lettuce, or lots of other foods.

I've been on Entyvio since 2019 when first diagnosed. Seems to be failing me for the last 2 years but colonoscopies look great. Going back to Mayo in August. I'm allergic to prednisone so can't use steroids. Is anyone going thru the same thing? Any ideas. I know everyone is different but Doctors are missing something. Bloated and cramping most of the time. Diarrhea is getting less severe on low residue diet. No eggs, lettuce, or lots of other foods.

I've been on Entyvio since 2019 when first diagnosed. Seems to be failing me for the last 2 years but colonoscopies look great. Going back to Mayo in August. I'm allergic to prednisone so can't use steroids. Is anyone going thru the same thing? Any ideas. I know everyone is different but Doctors are missing something. Bloated and cramping most of the time. Diarrhea is getting less severe on low residue diet. No eggs, lettuce, or lots of other foods.

I've been on Entyvio since 2019 when first diagnosed. Seems to be failing me for the last 2 years but colonoscopies look great. Going back to Mayo in August. I'm allergic to prednisone so can't use steroids. Is anyone going thru the same thing? Any ideas. I know everyone is different but Doctors are missing something. Bloated and cramping most of the time. Diarrhea is getting less severe on low residue diet. No eggs, lettuce, or lots of other foods.