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Biologic Limbo

I realized the other day that I’ve now passed the six-month mark of taking adalimumab, also known as Humira, for the second time in my life. Last May, after nine months of being on Xeljanz with little to no relief, my rheumatologist recommended that I try Humira again. The last time I had taken Humira was in 2007 when I briefly moved to France to teach English.

Shortly before leaving Minneapolis, my rheumatologist and I decided to switch from successful Remicade infusions to the self-injectable Humira–mostly due to convenience issues. Figuring out a way to get I.V. infusions in France for a relatively short period of time seemed like too big of a headache to deal with, especially with all of my health insurance “red tape.” I was also very determined to go to France and not let anything get in my way, so I gladly put up with the painful, stinging bi-weekly needle jabs. Living in lovely Normandy surrounded by gorgeous medieval architecture, fresh pastries on street corners, and delicious cheese almost made up for it.

Thankfully, the Humira injections worked just as well as Remicade and my RA remained stable (and my body prednisone-free) while I lived and traveled abroad. When I returned home to Minnesota, I went back to receiving Remicade infusions every two months, happy to relax and read a book in a comfy chair rather than stabbing my thigh or stomach with a terrifying needle. I hated giving myself shots, no matter how many times I did it (my first biologic was bi-weekly shots of Enbrel). And thankfully, Remicade worked well at keeping my RA under control for a second time. Great!

Fast-forward 10 years to December 2016. I can say with 100% certainty that right now, even as I sit here typing this article, my RA is NOT stable. Nor am I prednisone-free. And it’s not great. I feel like I’m living in some sort of “limbo land,” or biologic purgatory, as I wait and hope for Humira to work for a second time. Sadly, I have a sinking feeling that it’s not going to help this time around. Feet, ankles, fingers and hands keep swelling up in extreme shooting pain. Also telling is that I haven’t been able to get below 10 mg of prednisone for any real length of time. I’ve been stubbornly stuck at 15 mg for several months now, which is depressing. My main goal along with that of my rheumatologist is to get me off, and keep me off, prednisone for the long term. I can’t even remember anymore when I last had an extended break from that wonderful yet terrible steroid.

The last appointment I had with my rheumatologist was on October 12th, and during the appointment, we discussed how Humira didn’t seem to be as effective as it was the first time I had it. However, I did tell him about my recent experiences changing to a vegan diet and then also falling off the “vegan wagon.” When I was being very strict about the diet, I did see noticeable improvements in swelling and pain. And when I became lax and fell back into my “normal” diet of meat, dairy, and eggs, I definitely noticed a spike in pain and inflammation and my RA growing worse. So, you can probably guess what my doctor’s advice was at that last appointment: Go back on the vegan diet and try to taper off the prednisone again. See what happens, and then we’ll discuss switching to yet another biologic. However, what’s a bit worrying is the fact that I’m getting dangerously close to running out of biologic drugs; I’ve been on six since 2003 (Remicade and Humira twice).

So let’s get back to the diet. Despite that not too long ago I was ecstatic to actually see results from sticking to eating vegan (and gluten-free when I could), once I reverted back to my old eating habits, it’s been extremely difficult to get back to where I once was. Fall is an especially challenging time of year regarding food temptations; Halloween treats, three November birthdays (mine included), and Thanksgiving all make abstaining from favorite foods and treats nearly impossible. And then of course, you know what comes after Thanksgiving: Christmas! How can I bake my favorite Christmas cookies with my nieces and not sample a few? Well, I’ll have to try. Hard. Being stuck in “biologic limbo” and in pain really isn’t worth a few cookies, chocolate Santas, or Christmas Day stuffing. I am determined and rededicated now to hopping back on the “vegan wagon” and escaping from this RA purgatory of pain. We’ll see how it goes.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • slemanra
    2 years ago

    I have sle sjogrens whith Ra. and raynauds and psoriasis i take a biologic cosentyx for psoriasis and Ra. it works well for psoriasis but still having pain from ra.

  • Freethinker28
    2 years ago

    When I was diagnosed with RA back in 2012, I had been a vegetarian for over 25 years, so I had to go back to the “drawing board” so to speak, regarding my diet. I continued with my vegetarian diet (more strict) and I eliminated dairy and sugar. It did not work.
    I saw my doctor and I refused all medicine. I thought that I could get a handle on my RA thru diet and supplements. My doctor called me crazy

  • Angela Lundberg author
    2 years ago

    Hello,

    Thank you for reading my article and your comment. I’m sorry to hear that you’ve been struggling with getting your RA to a stable place. I know how that goes! I hope you can find relief and something that works well soon.

    Take care!

  • thegallopinggrandma
    2 years ago

    Angela I found your Blog extremely interesting. I have been on Humira for 16 years and I find more and more that I don’t like meat any more. Unfortunately this also applies to Alcohol which now tastes ‘odd’ ! So I am going to have a go at being a vegetarian and see if I notice any difference. I should be extremely interested in hearing how your vegan diet goes. There are quite a few good vegan cookery books and, even here in Ireland, vegan restaurants ! Best of luck !

  • Angela Lundberg author
    2 years ago

    Hello!
    Thank you for your comment–all the way from lovely Ireland! 🙂

    Best of luck to you with your new vegetarian (and no alcohol) diet! I hope it works well. It can be so frustrating trying these things because everyone’s body reacts differently. One thing I have definitely noticed is that alcohol makes my RA worse. I actually went out for a bit last night with a friend and today I’m much more stiff with more pain and swelling. Ugh.

    My sister gave me a vegan cookbook for Christmas this year but I haven’t tried to cook anything from it yet. It was recommended by two of my doctors. It’s called “The Oh She Glows Cookbook: Over 100 Vegan Recipes to Glow from the Inside Out” by Angela Liddon. She has a website too: http://ohsheglows.com

    Once I try making some of the recipes I plan to write about how they went! That’s great that there are vegan restaurants in Ireland. Where do you live, exactly? I haven’t been back for five years now (sad!) and I was only in Dublin.

    Thanks again for commenting and your kind support. Keep me/us updated on your new vegetarian adventure!

  • Carla B
    2 years ago

    Angela, I have a friend who has severe osteoarthritis and a vegan diet has almost eliminated her pain. I’ve thought about it and I am completely overwhelmed at how to start, how to shop and how to cook. I’m not very creative in the kitchen. Also, I don’t have a lot of will power. I would like to try but don’t know how to even begin. How did you start going vegan?

  • Angela Lundberg author
    2 years ago

    Hi Carla!

    Thank you for your comment! I’m thrilled to hear that your friend’s vegan diet helped her osteoarthritis so much. You’re right, it can be really overwhelming and require a lot of willpower changing to a vegan diet. Since this past summer, I started going to a clinic that practices integrative medicine, and my integrative provider helped me with ideas of which foods I should eat, places to go grocery shopping, some resources online. A nutritionist would also be able to help with this, I think. This fall I switched to a different and new integrative doctor (who’s actually at my primary care clinic that I’ve gone to for years) and she’s been even more helpful giving me resources about food and cooking and nutrition. She actually offered to give me a cooking lesson in my home, which is pretty awesome! But anyway, I’ve been seeing her on a regular basis now and she even usually gives me recipes during my appointments.

    But, yes, I hear where you’re coming from because I don’t know how to cook that well in general, never mind vegan cooking. I’m also trying hard to only eat whole foods and to cut down on gluten as much as I can, with the hope of also completely cutting that out of my diet. As I mentioned just now in my reply to someone else’s comment on this page, my sister gave me a vegan cookbook for Christmas that my integrative doctor and my pain management doctor both recommended (The Oh She Glows Cookbook by Angela Liddon). See my response above please! There are some other books and websites that have been recommended to me that I’d be happy to share. Actually, you’ve inspired me to write an article with tips and info about how to start eating and cooking (and shopping) vegan! Stay tuned for that soon and I’ll post the things my doctors and vegan friends have recommended so far.

    Willpower is tricky, especially when you have some pretty ingrained, longtime food and eating habits–which I do. I also love food and it’s hard for me to resist temptation. However, once I started seeing very noticeable results, that motivated me a LOT to stick with the diet. I’ve seen the swelling in my feet and ankles (especially my “bad” right ankle) go down dramatically after about 5 days of eating strictly vegan. Cutting way down on refined sugar helps a lot too. I’m also pretty desperate to get off prednisone finally, so that’s another major motivator.

    So…I hope this helps you somewhat! Please feel free to send me an email if you want to continue the conversation. I wish you the best of luck with your vegan decision(s) and I definitely think you CAN do it!

  • lisaforman
    2 years ago

    Angela, I applaud you for taking the steps to adjust your diet! It has literally saved me. I have in my head that eating gluten, dairy or sugar is really like “death”. I often ponder the feet, ankle, hands, the morning pain and realize that there are so many delicious ways to eat healthy and keep the RA at bay; which to me is of the utmost importance. I actually found out that I had a deep sensitivity to casein, and that I had one of 5 celiac genes. So, keeping dairy and gluten away keeps the inflammation and autoimmune away. Have a strong, positive year!!

  • Angela Lundberg author
    2 years ago

    Hi Lisa,
    Thank you for reading my article and your comments! I appreciate it. I’m so glad to hear that changing your diet has helped with your RA and that you’ve been able to find out information about celiac and how casein affects you. I’m just beginning to learn and understand how big of an impact food has on my health and disease. It’s pretty incredible when you stop to think about it.

    Thank you again for your comments and best wishes to you that you stay healthy and as pain-free as possible!

  • Mtbikergirl
    2 years ago

    I was just diagnosed with RA in October 2016. I’ve had lupus and Fibro since November 22nd., 2000. They started me on methotrexate and it’s just making me sick. Now they’re adding something called Leflunomide? I don’t know what this one’s going to do to me. I already take 25 prescription pills a day.

  • Carla B
    2 years ago

    Hi, I was diagnosed with RA in 2004. I was always on methotrexate and was extremely sick. I refused to stay on it and started biologics. I am now on a monthly Simponi injection and a daily leflunomide 20 mg pill. Right now my RA is pretty much under control after years of excruciating palin. The lefunomide seems to be working well and I don’t have side effects. Good luck.

  • dayslikethese
    2 years ago

    Angela, thank you for this- I definitely needed to be reminded about what and how I eat.

    I lived in Rome and Athens as a child and I was healthy. Then we moved to Virginia and Massachusetts and I was a train wreck. Very ill.

    I have to remind myself to read labels, eat more vegan foods, like soy milk and rice cakes. But also, how am I eating? Did I make my snack or meal time pleasurable and inclusive: ambiance. I’m not going to eat alone- put out some for the birds, listen to a talk show on the radio.

    There are vegan restaurants that deliver even in Texas. Have I ordered? No. The closest I came was a vegan pizza.

    Even with vegan food, I have to watch brands and quality and ingredients. Artifical flavors, “natural flavors” and artificial sugars as well as tortilla yeast are triggers for me.

    Best wishes to you for a fabulous new year!

  • Angela Lundberg author
    2 years ago

    Hello!

    Thank you for commenting on my article and sharing your experiences. Wow, that’s really interesting what you wrote about how your health changed (with your diet) when you moved to the US after living in Europe as a kid. From my own experiences living and traveling abroad, I do think that the food in Europe is healthier and safer–although that’s probably changing due to the influence of American fast food culture.

    I’m also surprised and happy to hear that you have vegan restaurants where you live that deliver. Wow! Now I wonder if any do that here in Minneapolis. Hmm.

    You’re absolutely right about being careful what kinds of vegan food you’re eating. A person can easily eat a lot of junk that’s technically vegan. The “Natural Flavors” thing really annoys me because it’s so deceptive–it’s NOT natural. And it’s in almost everything–even in organic “healthy” foods. Reading labels and paying attention to ingredients and eating whole foods as much as possible are all really important things, I think.

    Thank you for sharing and reminding me and others about this! Have a fabulous new year yourself! 🙂

  • Lawrence 'rick' Phillips
    2 years ago

    I have always heard (my doctor tells me) that each TNF inhibitor after the first declines in the period o effectiveness. So for instance, I used Remicaide (I loved that medication) for about 6 years but with closer and close dosing until I got to once per month. Then I went to Orencia and it was effective for about 24 months.

    This declining period lasted through each of the TNF inhibitors until I got to Rituxan (not a TNF inhibitor) and I have been on it at maximum dose for 3 years. I am so sorry you are using regular prednisone. I am not able to take that longer than a month or so because of the impact on blood sugar. But when I do take it I hate it.

    Blessings sister.

  • Angela Lundberg author
    2 years ago

    Hi Rick!

    Thanks for your comment. Yeah, I find it kind of confusing trying to figure out the effectiveness of these biologics based on length of time you take the medication, how many times you’ve been on it, etc. I seem to get different, conflicting answers about this from different doctors and people.

    After getting bi-monthly Remicade infusions for several years, and successfully for the most part, my doctor and I decided to switch me to Actemra because of my stubborn right foot and ankle not responding to anything (except high doses of prednisone). Well, it turns out that that was a mistake, I think. The Actemra failed and now I’ve been caught playing what feels like a game of “musical biologics” for the last 2+ years. There’s so much risk and uncertainty trying these different medications, and their effectiveness (and side effects) can vary so much from person to person. Good times, right?

    Has the Rituxan been helping you? I’m nervous to start taking it. I think I’ll get my first infusion in a couple of weeks. Yikes.

    Oh yes, prednisone. That horrible wonderful drug. I wish scientists could find a way to make a drug as effective but without the bad side effects and risks! I’m pretty desperate to get off it, although not desperate enough to become quickly disabled.

    Blessings to you as well, sir! I hope your days are as happy and pain-free as possible. 🙂

  • Carla B
    2 years ago

    Lawrence, after going through about 11 RA drugs (I am treatment resistant), my doc started me on Rituxan. After a few months, I started having debilitating nausea and didn’t know why. The docs didn’t know why either and sent me to Mayo Clinic. Turns out it was the Rituxan. I am now on Simponi. I’m glad it’s working for you. Just be aware that if you start having nausea and don’t know why, it could be the Rituxan. Hope it keeps working for you! – Carla

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