I also have UC and have been on the biologic, Entyvio for a few months. While I understand the desire to stop this controversial medication, the terror of another flare keeps me from doing so. For the past two years, I have been on every tier of treatment, from mesalamine to budesonide (oral and rectal) to prednisone to finally the biologic, as each flare became worse and I was in danger of having to have my colon and rectum removed. The UC had become "fulminant." Between the Entyvio and a whole food plant based diet, within the past 3-4 months, I have finally reached clinical remission. When I saw my GI doc 2 weeks ago, he gave me a Rx for more labs (C-reactive protein and Calprotectin) to check blood and stool and also wants to do another colonoscopy to check and biopsy mucosal lining. While I want to wait a few months for that (it has not even been a year) I will have the labs and continue the Entyvio infusions, which he stated, would have to be taken for "life". I said I'd like to revisit that in a year, as these are medications with many side effects. He told me that there is not clinical evidence in "deescalating" this drug, because it has been FDA approved (for Crohn's and Ulcerative Colitis) for only a few years (2014). He also said that when one takes a "drug holiday" the likelihood of another flare is greater and that statistically, the flares become harder to manage. It has only been a few months since I was in the bathroom 12-15 times a day, doubled over with bloody diarrhea, losing a half a pound a day. That in itself keeps me having the infusions every 8 weeks, as prescribed. So, yes, I have absolutely thought "to heck with this medicine" as I'm feeling better than I have in years, but the memories of the hell I've lived with each flare keeps me on it. Maybe I will revisit that thought in a year, while being closely monitored. And maybe there will be enough clinical evidence on deescalating or weaning off of Entyvio. There are so many clinical trials and so many studies on UC and Crohn's, I am hopeful that there will be safer treatments or maybe even a "cure" some day.....

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