Wednesday, April 11, 2018
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.
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?
from Carrots 'N' Cake https://ift.tt/2HrD0W7
Good morning!! I don’t buy berries much in the winter because I try my best to stick to seasoning foods, but come early spring they start popping up on sale and tasting better. Love me some berries!! Also that is Blueberry Swirl bread turned into a very eggy French toast covered in homemade almond butter. *OK emoji to the max* !!
Blog reader Kelli (who I met in Richmond!) reached out to me about featuring her new online jewelry store, Lyla Taylor Boutique. (It’s named after her daughters!) She sent me these three pieces: Floating Around Town earrings, The Lyla necklace, and the Floral Teardrop Cutout earrings. They are all such fun, colorful designs. Kelli’s prices are great too! The cutout earrings are made out of leather, so they are very lightweight. Perfect for spring
Thomas and I often sneak in a lunch date after yoga once a week, or every other at least. The hot spot is usually Mezeh, which is right near the yoga studio. I love their mint lemonade after a hot yoga class! And of course by 1:30pm I am ravenous for that mountain-high Mezeh salad. Harissa-tzatziki dressing blend on the side!
My favorite style of food is a toss up between Mexican, Southern, and Italian. I love them all for different reasons. But Mazen’s favorite is most definitely Italian. Boy loves pizza of all kinds and spaghetti! It’s the only dinner he sits down to and says “YAY” when we put his bowl down. (Most other dinners get an “ugggghhh” even if he ends up eating/liking it. Basically anything other than Italian gets an “ugh.”) So we’ve had spaghetti and meatballs and/or homemade pizza in our meal plan weekly for a while now. Hidden spinach stirred in for extra nutrition.
Hope you are all having a great week!
from Kath Eats Real Food https://ift.tt/2ECuwYU