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Has anyone with UC stopped responding to Entyvio?

Posted by dval @dval, Jan 8, 2021

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!!

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embassy | @embassy | 4 days ago
In reply to @dval "Thank you. My ulcerative colitis was well controlled for 13 months, while using Entyvio. A colonoscopy..." + (show)
@dval

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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I was on Remicade for 23 years and it was easily the best medication I’ve ever had for my UC. I only had to stop because my antibody level got too high. Now I’m on Entyvio and it’s not working as well so back to the doctor next week and see what else is available.

REPLY
dval | @dval | 3 days ago

23 years - wow! I have been on Remicade for several years- the highest dose (500 mg) every 4 weeks, then 5, now every 6 weeks, and it has worked. Therapeutic drug monitoring shows trough levels are adequate, antibody titers ok, not ideal, but ok. Inflammation markers are good, but had been better first 2 years. I see the writing on the wall… it’s just a matter of time that it will no longer be effective. Positive things are that there are so many newer treatments out there with different mechanisms of action and that they are easier to take. Negatives are that they don’t have a lot of data because they’re new and that at the age of 67, it’s just a matter of time for comorbidities… My general health is good; I’m finally at a healthy weight (was underweight at my worst with UC). I’m also still following the whole food plant based diet and am very active. I HATE this disease and how it has impacted my life. I am also grateful to have a brilliant GI doctor that listens. I try to take it one day at a time and be grateful for all the good people, things and support in my life.
I wish you the very best with the Entyvio!! Don’t be discouraged if it doesn’t work as well as the Remicade. We have a lot more options today!!

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