What My Doctor Said When I Asked to Stop Entyvio

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.

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

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37 Comments

  1. Hi Tina. I, too, have that annoying phlegmy-coughy thing going on after eating certain foods. My doc, too, prescribed omeprazole, which I tried, but stopped it after reading about the negative long-term affects. Have you tried Apple Cider Vinegar regularly in your diet? I know it seems counterproductive to add something acidic, but ACV and honey has helped me sooo much to whereas I hardly have that cough, throat clearing things anymore. I drink it religiously — between meals, especially before dinner (2tbs apple cider vinegar, tb honey, cinnamon and a drop of honey — really good) to neutralize the acid. Also, I know this sounds silly, but someone told me about chewing Orbit wintermint gum after eating and this has helped me, too. I always have a wad of gum available. So between those two alternative solutions, I am much better. Once in a while, I’ll still cough or have a little phlegm showing up after I eat something acidic, (like sauerkraut or cabbage) but not nearly as much as I used to. I’ve also found relief from regular use of the VSL#3 probiotic, which I know you take as well.

  2. Hi, Tina! I was diagnosed with Crohn’s Disease in 2011. I was put on some medication that worked for a while. Then it didn’t. Then surgery was recommended. I may have freaked out a lot. I ran into a friend that recommended a nutritionist. Jason Pearson is his name. It was a major lifestyle change for me! But. The plan worked immediately. It took 5 days to stop bleeding. Which was amazing!

    I am happy to report that after a year on his program, I was able to stop my medication. (I’m not sure this will be the case for everyone, everybody is different!) I had a colonoscopy done 6 months later and my GI doctor didn’t know what to do with me because I was so healthy. If you want, I can give you more information! His program saved my life! I am a believer that diet and exercise can heal most anything. It’s called the Jason Pearson Diet. Look it up on Facebook. You can look up the testimonials on YouTube. Let me know if you have any questions! Keep your chin up, lady! You’re doing amazing!

  3. I was on Lialda at first, but then my big know-it-all-high-and-mighty insurance idiots didn’t like that. So he switched me to Apriso. Same thing without the food dye. 😉 I was on that until I tried the new ‘diet’.

  4. So, I’ve been following your blog for quite a few years (before you met my husband Matt) at the recommendation of my sister in law when you started talking about your UC journey. Anyhow, long story short I failed Remicade last summer and just failed Entyvio. I just started Simponi injections and am praying it works but super worried because I had so many side effects and antibodies to the Remicade (nausea, fatigue, scalp/facial psoriasis). I loved Entyvio at first because the side effects were so minimal compared to the remicade!!! I hope you stick with it as long as you can even though it’s awful to be on meds. I absolutely hate being on meds and would do anything to come off them but if something is working for you I would try and stick with it. I’ve been maxed on prednisone for over 4 months now and just spent a week inpatient at MGH after failing the Entyvio and having a refractory flare. There aren’t many more drugs down the line for us at the moment especially as awesome as Entyvio so def hold out if you are in remission!

    I absolutely love that you are open about your journey with UC and makes me feel like someone actually knows the anxieties of being a mom with UC and a human living with having know where every bathroom is on the south shore. My goal is to be where you are at the moment so that’s my positive guiding light! Thank you again for being so open and honest with something that so many people are struggling with.

    1. Oh my gosh, I’m so sorry to hear that you are struggling. I really hope Simponi works for you. My new GI doctor said there’s a new drug (a pill!) that should be approved in June, so maybe that’s an option for you too. I know how hard this disease can be, if you ever want to chat, just let me know!

    2. Janet,
      How are you feeling now? Did any drug work? I know this is a few years late, but I am in the same position as you and hope that you found relief!

  5. So happy to hear that you’re healthy and doing well! I remember what a hard time you had before and I would hate for you to go back to that…I guess it’s good to go with what the doctor recommends!

  6. Hey Tina ! Love reading your testimony / experience with the UC subject. As a doctor to be (actually resident), I love hearing about the patient’s point of view. Hopefully it will make me a better doctor and it is way more fun to read than the academic research papers :). Hopefully everything will continue to go well for you on Entyvio.

  7. Thanks for sharing your UC journey with us. As a mom to kids with crohns, I’ve always heard you can’t restart these types of meds. Makes the decision so much harder, in my opinion. Glad you are doing well. If side effects aren’t bad, I’d feel inclined to stay the course and enjoy remission.

  8. My husband has UC, and has tried several drugs to get it under control. He actually had an allergic reaction to 2 that he tried, which dug him deeper into a flare. He was very sick, and finally got better with Simponi. Well, in 2016 he decided he was feeling so good that he would stop taking it without consulting his doctor, and instead try to manage his UC with diet. I was not thrilled, but he thought he knew best.

    He ended up in the ER because he got so sick and was so stubborn about his meds. He also lost about 25 pounds because he was so malnourished. He has since made a recovery and takes his medicine as prescribed. He’s not crazy about taking it, but it enables him to live, and live happy.

  9. I stopped taking my Lialda while working with a nutritionist and trying the LEAP diet. I lost a ton of weight and have never been so sick. After having a colonoscopy I found out that my UC spread from just my left side to my entire colon. I’m now on Remicade and starting to feel normal again and have gained my weight back after resuming a pretty normal diet. My doctor is hopeful that because I’m young one day I’ll be able to get off of biologics but right now it’s the only thing that works. It took 5 years to finally admit that diet and exercise cannot heal me and that I need be on medication. I’m sure things are different for everyone but right now I’m thankful. Thanks for sharing your UC journey. It’s really nice to know I’m not in this alone.

  10. Tina, thank you for sharing so much of your UC experiences with us! I’m also being treated for my UC at MGH (and also have switched docs after our doc left). First of all, how lucky are we that we have such amazing care options so close by?? They really are the best. Remicade is still working for me, but I’ve asked multiple times what they think of me coming off the drugs and trying to treat myself with diet. I know this has worked for some people, and was hoping it could work for me too. The doc always tells me a similar thing: it’s my decision, but he reminds me of the severity of my flare that landed me on Remicade in the first place…and that my body probably won’t know how to heal itself at this point. He says that the reason I’m feeling so good right now is *because* of the drugs, and there are not many options left after this. I’ve felt incredibly discouraged , but I suppose I’d rather live on Remicade with a high quality of life than be very sick and drug-free. So like Lauren above, I’m starting to accept that I just need the medication and that’s okay. In the scheme of things, I’m so lucky Remicade is working for me right now and I’m incredibly grateful.

  11. I wanted to share something that I came across recently that is very much on the woo woo scale that may be something to add to your took kit for dealing with your current experiences. I recently have come across a therapy called RTT which stands for Rapid Transformation Therapy which was developed by Marisa Peer. You can find therapists and more information about this work at https://www.marisapeer.com/.

    I came across her work through the Lively Show Podcast Hosted by Jess Lively where Jess talks about how RTT in addition to some nutritional healing, etc. cleared up her PCOS. This type of treatment has been helpful at tapping into the cause in your subconscious and figuring out where the condition started from and clearing it. I haven’t tried this myself but am really curious and wanting to!

    Again this is on the woo-woo scale and I will not take any offense if it does not resonate with you. I just wanted to offer this as another tool in your tool kit to experiment with if you have not heard of it!

    I hope your healing continues to go well. It sounds like you have a great treatment plan and support in place. Thanks for being so open and sharing your journey. You are helping more people than you realize!

  12. Hi Tina,
    Thanks for the information. I have been wondering the same thing since I have UC as well and have been feeling pretty good lately and seem to be in remission. I started entyvio in October so I am not sure on the timeline he has for me or if there is even a timeframe of how long I should be in remission for until I can stop entyvio. I have tried remicade and humira and both had allergic reactions to them. I took lab work to see if I had built up antibodies from remicade and it was negative. I had only been on it a few months. He said it just so happens that I’m one of those persons who reacts but for no apparent reason. October will be a year that I have been on entyvio and will be checking in with my dr to see what he thinks. I have recently been seeing an acupuncturist and she said she sees all of these issues with just the contact of the needle and my skin. It’s pretty fascinating. She told me to help clear my sinuses and the phlegm I need to stay away from all dairy, even eggs and bananas. I used to eat a banana a day. I have been learning more about diet and foods that help every organ in my body with UC and it has been an amazing experience so far. I would highly recommend it and hope that you find an acupuncturist as great as mine. Goodluck with it all and if I hear what my dr has to say I will be sure to share it:)

  13. I am hoping you can give me some feedback and I will not be stopping my Entyvio, but I am feeling discouraged because I have gained some weight since starting this last December, and I am unhappy about this. I have UC but am in a subgroup where I was experiencing the opposite of diarrhea, I was constipated with many of the horrible symptoms that will present. I was following a very healthy vegan diet, exercised, weight trained, and I was thin and fit. I am fatigued now and I have given up my vegan diet in an effort to curb the starvation I am experiencing. Has your appetite increased with this biologic? This is the only biologic I have taken and was using Lialda and Canasa prior to this treatment. Thank you for your feedback.

  14. Hi all. I’m 84 and have had Crohn’s for 50+- years , several bouts with obstructions, hospitalized but managed with difficulty to avoid surgery. Was in and out of periods of flares and remission but the head of gastro at the hospital said surgery is your last option. Well, my last option took place this past spring and had a resection as my small and large intestine had micro perforation due to severe narrowing of my ilium and upper colon. I had been on Entivio but stopped the infusions as no improvement was experienced. Also stopped Prednisone and sulfasalazine at the same time as was expecting my GI doctor to start me on a new program. That when I crashed due to all electrolytes out of balance landing me in the hospital and my only option was surgery. Now, six months later I have no symptoms, am on no meds for Crohn’s, but left with Afib and severe arthritis. Checking with the PA of my gastroenterologist, and the doc at the Infectious Disease Associates where I’m being treated for a bone infection of my finger, both said that biological for UC also are also effective for arthritis, and when withdrawn can trigger recurrence of arthritis . I’m currently experiencing severe joint and muscle pain and restricted movement in hands, wrists and hips, muscle weakness in legs and not too happy about that, but happy about lack of UC symptoms. I’m scheduled for a follow up colonoscopy and may be looking at starting a new biological, not only for UC as a maintenance regimen, but for arthritis as well.
    Also scheduled for a heart ablation for the Afib and rapid heart rate. Hope this helpful

    1. @Gerry Roelants: Hi Gerry, I too have had crohn’s for a long time, 3 bowel resections, I too was having a lot of pain in my joints and muscles (sent to rheumatologist), my electrolytes were out of whack, turns out my magnesium was very low (and my oxalates were high), a big difference came in the joint and muscle pain after taking magnesium glycinate pill supplements (health food store-low cost) in particular and eating foods low in oxalates. These 2 things made a world of difference for me.

  15. Of course stay on the drug!! If it’s not causing major side effects (which it can) and it’s working 100%. You don’t want to write off a drug until you have to, there’s only a finite number available (with more coming out, but it takes time)

    I myself was on remicade for 2 years, then I had hypersensitivity reactions (rash, trouble breathing), then humira for like 7 months, but that caused tremendous pain in arms/legs.

    Then entyvio, which didn’t even work for 100% of my Crohn’s, but after a year it started giving me serum sickness. I can’t even describe the level of pain and discomfort I had to deal with for 3 months (we tried the med one more time with more antihistamines, so I ended up doing one more infusion, which gave me serum sickness again but it was even worse). Muscle pain, Joint pain, muscle spasticity, headaches. I received opioid pain killers, but they hardly helped. Helped the pain, but the spasticity was still there.

    Since then I had surgery, and I’m probably going into a clinical trial in the next 2 months or so. Be glad you are stable, you don’t need to change anything.

  16. Hi, can you describe the cough phlegm thing you’re experiencing? I’ve had a horrible cough with phlegm for approximately 5 months, have had chest and nasal x Ray’s with zero findings and have been told it’s allergies. No allergy meds help, so I think it has to be entivyo but does don’t respond. They say it’s post nasal drip buy this is some crazy post nasal drip then so I am wondering if it really is tied to entivyo.

    1. Ughhh, this sounds so similar! It’s basically straight up phlegm that I cough up every morning. I had it for years, did all sorts of testing, CT scans, etc. and found nothing. I finally ended up doing a steroid inhaler, which made it go away, but it seems like it’s coming back again. What have your doctors said to you about it?

    2. Hi! I’m reading this while having my Entyvio infusion. I’ve had UC for 3 years and this has been the only drug that works. I developed acute pancreatitis from mesalamine, which had me in remission for 3 months. That was followed by budesonide, both oral and rectal foam. When they failed to work, oral prednisone helped until I started the Entyvio. At the same time I also started a plant based diet. I was having bloody diarrhea 12-14 times a day, couldn’t leave the house and couldn’t maintain 100 pounds. Within 6 weeks, things started to improve and I’ve been in remission for almost 9 months. I’m maintaining 105 pounds and still following the plant based diet. For the past 4 months, I’ve had this annoying morning cough and green phlegm every single day. Saw an ENT, took 2 courses of antibiotics, had CT scans and xrays of sinuses and chest and everything is clear!! I feel good and walk several miles a day, have no fever, but the mucus is unrelenting! I’m on allergy drops from an allergist, for several weeks, but no change. GI doc suspects Entyvio (that’s all it can be). We’re both afraid to stop Entyvio because it’s working, and the last flare was brutal – diagnosis last summer was “fulminant” so I’m afraid to stop but hopeful I may be able to control this just with diet. I have a colonoscopy scheduled for July 7 and will see if mucosal lining has improved. I’m relieved to see others have this horrible mucus. Please share anything that works! Thanks so much!

      1. Hi Donna, glad to hear you are maintaining! I went off of Entyviyo in Jan., as I have been in remission for over a year (Knock on wood.) I started to get odd skin rash, and with Coronavirus looming, Dr. said it was ok to stop. I know, this might mean if I need to go back on I might not be able to. That happened to me with Remicade many years ago, had allergic reaction after taking a break. Also got Pancreatitis, mine from Imuran, so I cannot take that either. The cough is still there, but I think better since stopping, but hard to tell because quarantine has kept me largely indoors. Not much helped, but I did find Mucinex rapid melts for kids was not bad to have handy during a coughing fit.

        It is very hard to deal with because it sounds horrible, and in times of COVID-19, very much gets ya stared at. I am not sure they will ever tie it to the medication definitively, but I think it must be it. It does work though, my remission is proof, so it is worth the eye raising cough… 🙂

  17. Hello,
    I contracted UC 14 months ago as a side-affect of a cancer drug called Nivolumab I had been taking via infusions to hopefully prevent the return of Stage 4 Melanoma. I had never before in my life experienced anything nearly as debilitating as UC. I could not leave my house at all for a month last Summer. The few times I ventured out , it did not go well. I lost 25 lbs and probably would have ended my life as that was not how I wanted to spend it. After a month, meds got it a little under control but I still had flare-ups.
    Then last October, I began Entyvio infusions and within a few months a colonoscopy showed no signs of UC and I have been living a normal life ever since. I have a 30 minute infusion every 8 weeks with no noticeable side affects.
    I am writing this just to share my experience which might be helpful to others.
    I did not know until reading in this space that a decent percentage of people who stop taking Entyvio then have UC return and find that Entyvio no longer helps.
    Thanks for that information !
    Needless to say, I will be continuing the Entyvio treatment and feeling thankful.

  18. Hi all,
    I was diagnosed with crohns in 2012 and spent about 3 weeks in the hospital trying to get myself up and out of there. A couple transfusions and PE later I was given my first Remicade treatment (without really knowing what it was or what to expect). After treatment 2 I ended up with peripheral neuropathy, a tremor in my right hand, and A-fib. They Immediately stopped the treatments and I’ve just been on azathorapine since with prednisone added for flares because they’ve been afraid to try anything else. The main problem has been the nerve pain now and although the crohns is only about 60% controlled, it seems like nothing compared to the nerve pain. Any way.. now I’m dealing with a major flare and I’m trying to decide if I should try some of these newer drugs that my GI says might work. He is almost as scared as I am because of my situation last time but says that they are made slightly different so I might be ok. My options are Entyvio, xeljanz, and stelara. Any feedback is welcome and needed. I’m now 53, no longer able to work, don’t even leave the house much anymore, and would love just a bit of my life back, but I’m soo scared to try . Thanks so much for any feedback at all!

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