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Has anyone with UC stopped responding to Entyvio?

Digestive Health | Last Active: Jan 26 2:41pm | Replies (48)

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@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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Replies to "Thank you. My ulcerative colitis was well controlled for 13 months, while using Entyvio. A colonoscopy..."

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.