Remicade Stopped Working + Why I’m Eating a More Plant-Based Diet

As the title explains: Remicade stopped working for me. Whomp whomp.

Within days of giving you guys a happy UC update, things started to fall apart. (Gah, I totally jinxed myself.) I thought maybe I was having a bit too much fun around the holidays (i.e. treats, booze, staying up late), but after a few weeks of progressively worse symptoms and additional drugs that just weren’t doing the trick, I went to the hospital for an earlier-than-scheduled Remicade infusion. Thankfully, it stopped the downward spiral of symptoms, but it didn’t help me fully recover.

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Meanwhile, I was participating in a UC + diet study, which involved frequent testing throughout the duration. One of the tests (calprotectin) checks the level of inflammation in the colon. At the pre-screen to get into the study, my level was 200 mg/kg, which was on the higher side (the average in healthy adults is around 25), but I wasn’t having a ton of symptoms, so I was “sick” enough to get accepted to the study, but I wasn’t totally miserable. Midway through the study, however; my calprotectin level jumped to 1,550. Yikes. By the end of the study, it was over 5,000. Yowsahs. In addition to inflammation, the calprotectin level is also associated with the amount of blood in the colon, so it was pretty obvious what was going on.

Things were getting worse, not better, so I made an appointment with my GI doctor last week to see what we could do to get me healthy. Remicade wasn’t working like it used to, so my doctor wanted me to try Entyvio, a new drug specifically for the treatment ulcerative colitis and Crohn’s disease. Unlike Remicade that targets a specific type of inflammation (TNF), Entyvio targets inflammation only in the gut. People are really excited about it since it seems to work for a lot of patients and it doesn’t have the same side effects and risks as Remicade. Although, the FDA only approved it two years ago, so it’s a pretty new drug, which, of course, makes me nervous since there aren’t any long-term studies about it. But, hey, it’s roll with it or deal with the alternative, right?

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Anyway, I had my first infusion yesterday. Everything went fine. Another great thing about Entyvio is that it only takes 30 minutes instead of 2 hours like Remicade. I was in and out before I knew it. I go back in 2 weeks and then in one month for additional loading doses. After that, if it’s working, I’ll have an infusion every 8 weeks. (My doctor says it takes up to 12 weeks to see full results.) Let’s hope I see some improvement!

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Ok, so I know a lot of you are wondering why I decided to eat a more vegetarian/plant-based diet, and I figured this post was a good one to address your questions. Basically, I was having a lot of UC symptoms, and I had tried every other diet out there, so I figured why not? Plus, a reader forwarded me a video about recent IBD research and how a plant-based diet helped reduce symptoms. Yes, I had heard this a zillion times since being diagnosed, but I spent so much time in Paleo world over the years, it was tough to wrap my brain around. At the time, I was really frustrated that I was still having symptoms everyday even while on Remicade, so I decided to give a more plant-based diet a try. (I still eat chicken a couple of times a week, and I’ll have a piece of bacon or bite of red meat from time-to-time, but I mostly consume a vegetarian diet.)

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These diet changes happened midway through the Fall, and I remember November being an especially good month for me, health-wise. I was barely having any symptoms and felt really great, so I continued to eat a more plant-based diet.

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As I mentioned above, things fell apart around the holidays with the worst of my flare symptoms happening around the New Year. I was probably having a little too much fun, so I got myself back on track with vegetarian eating and put a focus on anti-inflammatory foods as well as increasing my omega-3s and decreasing my omega-6s. Even still, I spent most of January dealing with some pretty bad symptoms. I felt like I was doing everything I was suppose to do, but nothing seemed to work.

Early February was pretty rough on the UC front too. My normal was not normal, and I had had enough. I saw my GI doctor last week and now I’m praying that Entyvio works. I’m planning to stick with the vegetarian/anti-inflammatory diet for now because, honestly, it’s the only diet I’ve tried that made any sort of difference in my symptoms. (The year that I ate Paleo, including 4 months of Autoimmune Paleo, never improved any of my symptoms. I wasn’t on Remicade then, but I never got better.) Right now, I’m planning to stick with a mostly plant-based diet and just hope that the Entyvio works.

Side note: For those who asked, I’m planning to write a post about my favorite forms of vegetarian protein, so please keep a look out for it in the near future!

Question of the Day

What are your thoughts on a plant-based diet? IBD peeps: Any experience with Entyvio? 

P.S. IBD peeps: Just wanted to share: 5 Diet-Related Colitis Studies Recently Published!

103 Comments

  1. I’m sorry to hear that you’ve been so sick. I hope the new meds work. Speaking as someone who has food intolerances, it’s so hard not to ‘cheat’ when everyone else is indulging, but sometimes the after-effects just aren’t worth it. Stay strong! And often the popular ‘diet’ isn’t the one that works with your body chemistry and needs, so you have to do what’s best for you. I’m looking forward to your upcoming posts on eating a more plant based diet – I need to incorporate that more into my life.

  2. I hope this new stuff works for you! I’m on a plant-based diet (I was vegetarian for years and then heard that dairy is super inflammatory so I went vegan) and so far I feel really good! I also got an IgG blood test for food intolerances/allergies and it said I should stay away from gluten as well as a few other things. Since eliminating those from my diet I’m feeling MUCH better! I never would have guessed!

  3. I’m so sorry to hear you have been struggling with this. I hope the new treatment works for you. I’m excited to read your post about plant-based proteins as I think having a more plant-based diet is healthy for all of us, but protein is crucial for me, and I’m not sure how to replace meat.

  4. I’m so sorry to hear that it isn’t working for you any longer. Keep up the faith and positivity – you’re doing so well!

    If you’re interested in learning about some pretty out there, but supposedly effective, approaches, I would suggest picking up the book Medical Medium by Anthony William. I am a medical student so I really do BELIEVE in science and evidence-based treatments, but I had to see what all of the hype was about. He has lots of tips for healing from IBD and colitis!

  5. Hey Tina!

    I also have IBD (Crohn’s) and I think it’s so cool that you’re starting Entyvio (never thought I’d say that about a biologic)! For a long time, I was the biggest cheerleader for Remicade because it was my miracle drug too and it put me into remission. Sadly, I had one of those super rare anaphylactic reactions that you read about (lucky me!) during my infusion after being on Remicade for almost five years. I had my first dose of Humira four weeks ago so I’ll know soon if it’s working. Not that I would ever question the extremely talented GIs at Mass Gen, but I was wondering if you know why he/she encouraged Entyvio over Humira or Cymzia? I’ve heard great things about Entyvio and am just curious why some doctors choose one biologic over another.

    Best of luck with your new infusions!

    1. From what I’ve heard, Humira is similar to Remicade, so there’s a good chance it might not work for me, but Entyvio targets specifically gut inflammation. Do you happen to have more than one autoimmune disease? Entyvio supposedly also has fewer side effects. It’s tough to know for sure because it’s such a new drug, but hopefully the doctors and researchers are right! I hope the Humira works for you! ❤️❤️❤️

  6. Hi Tina!

    It’s hard to hear that you are going through troubling times. You seem to have a very positive attitude towards it all, and that’s what will keep you healthy and happy more than anything! 🙂 Prayers to you (and also Quinn!) for your recovery! I sincerely hope this works for you!

  7. Sorry about the problems, hope things get better soon! I’ve been on a plant based diet heavy on whole foods for about 6 years now and it improved a lot of things for me, the three main things are migraines disappeared, more energy with better recovery, and better skin. I just posted a great Google Talk with Dr. Michael Greger that’s worth a watch.

  8. Hi – sorry to hear you have been so unwell.
    Had you thought of using natural slippery elm powder first thing in the morning? You make a gruel with it with a little warm water and take a little each day. It should help alleviate symptoms.
    Then improve your microbiome with fermented foods such as kefir and kombucha (both probiotic drinks) and fermented vegetables. i’ve just started fermenting and there is lots of info online. Water kefir has been fun to make and I’ve just had a go with a couple of vegetables. Then carry on eating the plants to feed your new friendly bacteria!
    Hope you’ll feel better soon – Margaret

  9. So sorry, Tina! I know how much you love CF..but have you considered avoiding high intensity exercise for an extended period of time? I’m an RD with extensive GI experience. Many of our patients find high intensity exercise (and things like distance running) aggravate the GI system. It can cause GI upset in individuals without UC, so not too surprising it could influence a flare up. In my experience, it’s something you have to avoid for a extended period of time (not just a few months). Alcohol is another one that tends to be a major trigger for UC. I know it sucks – but it might be best to completely cut out for a while. Hoping you feel better soon!

  10. Does coffee/alcohol not affect you? I know when I have GI issues (which to be fair are completely different than yours) that is the first thing to go. No nutrition and definitely hard on the gut.

    Good luck with the new drug!

  11. My husband stopped responding to remicade too and had his first dose of Entyvio last friday…no improvements yet but we’re hopeful. It’s beenough incredibly difficult watching him go through this and i wish i could do more to help. I wish you all the best!

  12. Yuck- I am so sorry! Have you ever looked into the Solving Leaky Gut program? I believe I learned about it here on your blog, and the diet+supplements+life style changes have worked so well for me! (So thank you for promoting it!). Hope you feel better soon!

  13. Hi Tina,
    I love your blog and especially hearing about your UC experiences. I’m sorry to hear Remicade stopped working for you. I’ve been using cimzia for 13 months now for crohn’s and it has been a life saver. I fear the day when it stops helping. I look forward to hearing how Entyvio works for you since I may be using it down the road. Good luck and fingers crossed that you will be feeling well soon!

  14. I’m really struggling right now. in a lot of pain. I have had UC for thirty years in and out of remission. Ive ben on Remicaid and Humeria and now starting entyvio again.
    Two years ago I was hospitalized for what appeared to be a uc attack-but even steroids didn’t help it. Entyvio eventuallly did. However-two weeks ago I had another attack but no blood-it turns out there are large undigested food particles in the stool. When I researched this I found it to be leaky gut syndrome-I also found out that many of the symptoms I have been experiencing for years such as sinus headaches, Chronic fatique, skin issues are all related to leaky gut syndrome. All these years I have been told the symptoms were unrelated and diet had nothing to do with my UC.
    I’m so frustrated right now-and all the advice on the internet for leaky gut seems impossible to follow.
    I refuse to go back to the hospital-but I feel really crappy.
    Any suggestions are appreciated.

  15. Hi, I have been suffering ulcerative colitis for 26 years , more than 10 years in remission with mezalamina. Since 2014 it stopped working and I have been flaring since that year up to today. On mid January I started Remicade 5mg/kg (loading dose and 3rd infusion after load dose). Last week I had my 4th infusion at 10mg/kg and I still haven’t responded yet. I don’t know what to do. Any advise will be appreciated. Thanks.

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