What My Doctor Said When I Asked to Stop Entyvio

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Hi, I'm Tina!

I’m the owner of Carrots ‘N’ Cake as well as a Certified Nutrition Coach and Functional Diagnostic Nutrition Practitioner (FDN-P). I use macros and functional nutrition to help women find balance within their diets while achieving their body composition goals.

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Hi, guys!

Just wanted to share what my doctor said when I asked him if I could stop Entyvio. I received a bunch of questions on social media about his response, so I figured I should fill you guys in over here.

Photo by Marcelo Leal on Unsplash

Ok, first a little backstory…

My GI doctor that I loved so much left MGH to work for Takeda, the company that makes Entyvio. This makes me both sad and happy. Obviously, sad because he’s not my doctor anymore, but happy because he’s helping to further IBD research and create more treatment options for patients. Even though “Big Pharma” gets a bag rap, I believe there are lots of good people – like my old doctor – who honestly want to help others. I still remember him saying: “I’m a dreamer and hopeful guy. I don’t know if you’ll be on these drugs for the rest of your life,” and I truly believe him. With his help and that of others, better and safer treatment options will be available to patients.

Anyway… my old GI doctor left MGH, so I was assigned a new one. Knock on wood, I’ve been doing really well health-wise, so I’ve had no reason to make an appointment with him. I recently posed the question of stopping Entyvio to one of the Nurse Practioners that I typically meet with, and she said that I needed to chat with my doctor about it and encouraged me to make an appointment with him. My next Entyvio infusion was scheduled for Thursday of last week, so I made an appointment with my new doctor on the same day.

Meeting my new doctor went well. The good news: He didn’t immediately shut down my idea of stopping Entyvio, and he provided me with some information to help me make my decision. The bad news: He told me that 70% of IBD patients who stop their medications typically flare within a year. He also told me that 30-40% of patients who stop Entyvio are non-responsive to the drug when they start it again. I didn’t think Entyvio was like Remicade with regard to antibodies, but, apparently, your body can become non-responsive to the drug. Obviously, my doctor was trying to steer me in the direction of not stopping Entyvio, but he said the decision all mine, and I should consider the risks and how they relate to my lifestyle. If I were to flare, it might be tough to get me out of it. Remember what I went through last time? And, at this point, Enytvio is my only real option (there are other drugs, but they’re in the Remicade family and that never worked for me). So, worse case, if I couldn’t get the flare under control, I might need surgery, which I want to avoid at all costs.

So, long story short, chatting with my new doctor made me realize how good I have it with Entyvio. I can live the life that I want and that’s sooooo important. I still remember not being able to take Murphy for a walk because I couldn’t be away from home (and a bathroom) for that long, and I do NOT want to live that life again. I was so miserable, and I’m not willing to risk what I have right now. It’s just not worth it – both physically and mentally – for my health.

Beside the cough-phlegm nonsense that I’m dealing with, I’m pretty healthy otherwise (*knock on wood*), so, right now, I’m planning to stay on Entyvio and enjoy the health that I have. Hopefully, it keeps working without any side effects or maybe an even better drug will come along.

Question of the Day

Have you ever stopped taking a medication despite what your doctor recommended? 

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