Episode 48: Medication Decisions

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Deciding Whether or Not to Take Autoimmune Medication

This is a decision we are all faced with and it’s rarely an easy one. Not only that, but our decision might change over the course of our illness. This podcast was inspired by my recent decision to start medication after 4 years on the paleo autoimmune protocol. Today, I share the reasons behind my decision and also interview 5 other people about their medication choices. My guests have a wide range of diagnoses and experiences. Some have always taken medication, some have never taken medication, and some have gone on or off medication, based on changes in how they feel. The important thing to know is that there is no one right choice for everyone. My goal with this podcast episode isn’t to provide answers, but just to highlight the complexity of this decision, and let us all know that we’re not alone.

To be clear – this show isn’t designed to be medical advice. Definitely work with your doctors when deciding what choice is best for you.

Listen to the Show

Show Notes

  • Intro (0:00)
  • Thank You to our Podcast Sponsor – Paleo on the Go (2:13)
    • A frozen meal delivery service, they have a large menu of items for the paleo autoimmune protocol (AIP).
    • Use the code PHOENIX for 10% off your first order.
  • Eileen’s Medication Decisions (2:58)
  • Jaime’s Medication Decisions (14:08)
    • Jaime Hartman is the blogger behind Gutsy By Nature. She has Crohn’s disease and was diagnosed over 20 years ago, at the age of 19. She has been on medication ever since and has experienced both positive and negative reactions. She now tries to avoid prednisone, but finds the combination of the paleo diet and lifestyle in addition to biologic medication, to be the most effective way of managing her illness. She has no intention of going off her  medication, feeling that’s too big of a risk given the aggressive nature of her disease. She also has no intention of returning to a Standard American Diet, since a nutrient-dense paleo diet seems to make her medication work better. Her philosophy is that the goal should be to live the most vital and healthy life possible, and if medication helps, there’s no reason to avoid it.
  • Matthew’s Medication Decisions (30:59)
  • Samantha’s Medication Decisions (48:18)
    • Samantha Beth McClellan was diagnosed with ulcerative colitis five years ago and took a variety of medications that helped but didn’t stop her flares. It wasn’t until she added the paleo autoimmune protocol that her disease became well managed. She was even able to reduce her medication, dropping those medications that gave her negative side effects (Imuran and prednisone). Now, she takes an anti-inflammatory medication called mesalamine, which she tolerates well. She has tried to eliminate the mesalamine, but her symptoms return, so at this point the combination of mesalamine and the AIP is the best choice for her.
    • Samantha has also struggled with a recalcitrant giardia infection that she had to treat with antibiotics. Unfortunately, a side effect of antibiotics for Samantha is an autoimmune flare. Resource: What To Do When You Need to Take Antibiotics?
  • Whitney’s Medication Decisions (1:01:43)
    • Whitney Ross Gray is the blogger behind Nutrisclerosis. She was diagnosed with multiple sclerosis 9 years ago and has never taken medication. At first her symptoms were mild, and she simply tried to ignore her diagnosis. It wasn’t until after she had her second child that her symptoms worsened and she seriously considered taking medication. At this point, she was having difficulty walking. At the same time, she learned of the paleo autoimmune protocol and chose to do that instead. She had such success that she’s been in remission for the past 6 years. Whitney said she used to be very judgmental of anyone who took medication, but no longer feels that way. She hopes to never need medication herself, but would consider it if her symptoms dramatically worsened.
    • Article Whitney mentioned: Unicorns and Rainbows – The Myth of the Paleo Panacea.
  • Kari’s Medication Decisions (1:18:23)
    • Kari Owens is the blogger behind kariowens.com. She was diagnosed with ankylosing spondylitis 10 years ago at the age of 15. She has had a variety of medication experiences over the years, including a medication-induced remission followed by a relapse where she no longer responded well to medication. At that point, she decided to go off her medications and try the paleo autoimmune protocol instead. Over time, the AIP completely eliminated her pain but didn’t stop the disease process on its own. After doing some research, she chose to add the biologic Simponi and achieved remission again. Once achieved, she went off the Simponi and has been in a medication-free remission for the past year.
  • Outro (1:43:27)

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13 comments on “Episode 48: Medication Decisions”

  1. Hi Eileen, you mentioned that while you were able to keep your disease control with diet for many years, you had a hormonal swing in your 40s, which made the rheumatoid arthritis get much worse. Could I ask, were you supplementing with bioidentical progesterone at the time? I’m trying to decide whether to take progesterone daily, or only during my luteal phase. I want to try to prevent any aggravating hormone swings if I can.

    1. Hi Shelly. That’s a great question! I wasn’t taking progesterone at the time, but I did start taking it later and have been taking it ever since in the form of a progesterone cream. It’s incredibly helpful in balancing my hormones and improving my mental health, but it has not eliminated my need for immunosuppressant medication. Your results may vary, though. I recommend talking with your healthcare team about the best choice for you.

  2. I also have a question about nausea and supplementing with folate. Is that a potential help with all immunosuppressive drugs or is that a therapy specific to methotrexate?

    1. Hi Heidi. It’s specific to methotrexate, because methotrexate interferes with folate absorption and function in the body. If you’re experiencing nausea on other medications, you can try some Homemade Ginger Honey Tea. And anything you can do to support your gut lining might also be helpful, like bone broth, and I’ve also found marshmallow infusions helpful with nausea. Disclaimer – I’m not a doctor, so these aren’t prescriptions, but rather a few home remedies you can try. I hope the nausea passes quickly for you.

  3. Eileen, You’ve made a difference again! I listened to this podcast after I had already made the very difficult decision to try an immune suppressant for my UC. I’m going to feel so much better about it now (if I get approved that is) and instead of sitting at my infusion crying at my ‘failure’, I’m going to do my best to think positive thoughts. (and continue with my nutrient dense eating). I really hope you’re one of the ones that gets a miracle with your medication! Thanks so much for your positivity.

  4. Hope your treatment is going well…update?
    Considering meds myself after recent RA diagnosis and 3 month AIP diet mod but seem to be going in wrong direction.

    1. Hi Brett. Thanks for checking in. It takes about 6 months before results are clear with medication, and there’s some trial and error along the way. I’ll write an update in January. It does seem to be helping me, though.

  5. Listening to this podcast and these stories of healing I am humbled. With only one autoimmune condition and a miraculous response to the AIP, I feel very blessed.

  6. just weeks on Wahls Protocol (step 1) my walking improved dramatically. Now 4 months later I feel I’ve hit a plateau. Where do I go from here?

  7. Hi Eileen

    I really appreciate your openness and honesty about your journey with RA.

    I was diagnosed with RA at 18 years of age (27 years ago) I spent 10 years on lots of medication, however also in this time also started experimenting with diet, everyone thought i was crazy back then, but i figured my body had to be reacting to something…..

    Dairy went first then processed food then gluten and nightshades and individual testing for antibodies (this took about 15 years to work out thru trial and error). I have been medication free for about 15 years.

    I am writing to you because two years ago i started having consistent problems again, my frustration was huge because the healthier i ate the worse i felt. I was living AIP (but am fine with eggs).

    One day I had 6 dried figs and was almost in tears from the pain……. through that I discoveted oxalates. I had never heard of them before. Most of my education has come from Trying Low Oxalates facebook page., they are a very active science based group.

    The first couple months on low oxalate diet was tough as i dumped the oxalates stored in my body. Nearly 12 months in and i have never felt better in my life! I have added rice back into my diet because LOD is quite restrictive, however as new habits develop its much easier.

    Your voice in the autoimmune community has so much impact and for this message about oxalates to be recognised will save so many people so much pain. Please look into this for yourself and for those you have a voice to.

    Sacha Poyzer

    1. Hi Sacha. Thank you so much for sharing your story! You were definitely a pioneer in the movement for dietary healing. I’m so glad you’ve had such success and have now found a new piece to your personal healing puzzle. I have heard that some people do have problems with oxalates. I don’t personally (having tested a number of different food groups on my own body over the years). However, starch is something I need to watch – too much and my inflammation increases. We are all so unique!

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