“Sometimes the hardest thing and the right thing are the same.”
~ Anonymous
Deep Breath
This is one of the hardest posts I’ve ever written, because it’s one of the hardest decisions I’ve ever made. So, I’m going to do my best to share where I started (for those of you who don’t know my whole story), and what changed that led me to this choice today. All of us with autoimmune disease face medication decisions at different points in our lives. This post isn’t meant to be advice for anyone else. I’m just sharing my journey.
Rheumatoid Arthritis Onset in 2012
Four years ago, rheumatoid arthritis hit my life like a wrecking ball. I went from a fit, healthy woman who worked full-time as a massage therapist and hiked on the weekends for fun, to someone who limped crossing her living room and didn’t have the strength in her hands and wrists to wash dishes. I was introduced to a level of pain so unlike any I had experienced before that I think it deserves its own word. I woke up in the morning feeling 90 years old, and that was the good part of my day. Every night like clockwork, a joint would flare so extremely that I would have to immobilize it or I would be gasping and crying with pain. If it was my wrist, it went into a brace. If it was my shoulder, it went into a sling. If it was my knee, I could no longer support my weight. And if it was my jaw, I couldn’t open my mouth to speak or to eat. Painkillers barely took the edge off. I was terrified and didn’t know how I could survive it.
Choosing the Paleo Autoimmune Protocol Instead of Immunosuppressant Medication
Most people in my position would have taken the medications offered by their rheumatologist. But like many of you, I was terrified of the side effects and hated the idea of a lifelong medication. So, I desperately searched for another way. First, I found the GAPS diet which took me out of crisis. Then, I found the Paleo Autoimmune Protocol, which reduced my symptoms by 95% and stopped my flares altogether. I wasn’t in remission – I could feel RA like a whisper in my body, but I felt so much better that I was filled with relief and gratitude. I also felt better than most people I knew with RA who were taking immunosuppressant medication. My improvements didn’t happen overnight. They were slow and steady over the course of a year. I went from excruciating pain every day, to moderate pain, to pain so mild that I could manage it completely with just one Aleve tablet twice a day. I went from being unable to work, to working part-time, to eventually working full-time again. I also returned to the mountain hikes that I loved, and could do all of the chores of daily life from cooking to cleaning to gardening, with joy.
My Experiments to Try to Reach Remission
Remission is the holy grail for us all, whether we are on medication or not. So, I tried a lot of interventions over the past few years:
- Supplements: Some helped me, some hurt me, and some had no effect whatsoever. Curcumin and Cat’s Claw have been the most helpful for me, with Curcumin acting as an anti-inflammatory and Cat’s Claw acting as an immunoregulator. However, neither replaced my need for Aleve.
- Low-Dose Naltrexone: This is actually a prescription medication, but one that most rheumatologists will not prescribe. Instead, it’s offered by functional medicine MDs in place of immunosuppressant medication. It’s much milder with fewer side effects, and some people have dramatic improvements on this drug. For me, it improved my morning stiffness enough to be worth taking, but it had no benefit beyond that.
- Functional Medicine Testing: I had blood, stool and urine tests done in 2014 and 2015 which didn’t reveal any major obstacles to my healing. My metabolism, digestion and nutrient absorption were all strong. My blood sugar and cholesterol levels were within healthy ranges. My thyroid hormones were optimal. My methylation was working well in spite of having a heterozygous MTHFR mutation. My liver, kidneys and adrenals showed optimal function. There were no yeast, parasites, fungi or true dysbiosis. There were some minor imbalances between beneficial and harmful bacteria, along with signs of leaky gut. Since leaky gut and autoimmune disease go hand in hand, this wasn’t a surprise. However, the hope was that by improving the balance of my gut bacteria, we could eliminate my remaining RA symptoms. I was put on an herbal antibiotic + probiotic protocol. Unfortunately, this resulted in no change at all. Don’t take this as an argument against functional medicine testing. Many people do find clear problems that once addressed dramatically improve their autoimmune symptoms. However, they often aren’t people who are already feeling 95% better.
- Lifestyle: The paleo autoimmune protocol isn’t just about food. I also addressed factors outside of diet, like sleep, sunshine, movement, stress, meditation, emotional work, etc. They all contribute to how well I feel every day, but they haven’t put me in remission.
Eventually, I came to a peace about not being in remission, and simply felt grateful for the quality of life I had with a disease that I knew could be debilitating.
A Spike in RA Symptoms Following Hormone Changes
My improvements in RA symptoms stayed stable for two years. Then, my hormones shifted, and everything else did as well. I hit perimenopause, and my menstrual cycles started ranging between 3-1/2 and 10-1/2 week cycles. With that shift came swollen ankles, difficulty sleeping, and my first experience with adrenal fatigue. Simultaneously, I started having miniature RA flares. They reminded me of RA onset but they were much less severe (thankfully). The inflammation moved around my body from joint to joint, but I didn’t need to immobilize joints or take additional painkillers. However, something else happened which was new and very scary – I started experiencing rapid joint changes simultaneously. I lost my ability to make a fist as well as significant range of motion in my left shoulder. I took steps to try to balance my hormones, but that takes time, and my joints were getting damaged right now.
Trying Immunosuppressant Medication for the First Time in 2016
This was one of the toughest decisions I’ve ever made. I passionately hoped I would never need immunosuppressant medication. But as I went from a woman who raised her arms overhead in celebration, to one whose left arm was now stuck by her side, the vision of shoulder replacement surgery appeared in my mind. That scared me more than medication.
So, I consulted with two rheumatologists. Neither dismissed the paleo diet out-of-hand, which is amazing. They both said that diet can help with pain relief, and the second rheumatologist actually recommends paleo to her patients as an adjunct to medication. She also gave paleo credit for slowing down my disease progression over the past four years. However, they both agreed that it was time to try medication, to see if we could actually stop the disease progression altogether and ideally reach remission. Their recommendations were identical: methotrexate + prednisone + a biologic. I was shocked. That is a triple combination of the strongest medication available for RA. I had hoped a milder medication like plaquenil and sulfasalazine would be enough for me. I was told that those can be effective for mild RA, but I have severe RA that is actively changing my joints. This combination is my best chance at stopping that progression quickly and regaining range of motion.
In spite of my experience successfully avoiding medication for the first four years after onset, I’ve never been anti-medication in theory – at least when it came to other people. In fact, in my Navigating Setbacks article, I wrote that sometimes diet + medication is the answer. I’ve always supported my readers who have made that choice. Now, it’s time to support myself in that same decision.
Does This Mean the Paleo Autoimmune Protocol (AIP) Doesn’t Work?
The AIP reduced my symptoms by 95%, and I maintained that improvement for years. Even when I had a resurgence of symptoms, it wasn’t as severe as rheumatoid onset. The AIP didn’t cure me, but it has certainly helped me, and I won’t be stopping just because I’m trying medication. I want to give my body the best chance possible to reach remission.
The American College of Rheumatology has a set of criteria to determine if a drug is successful. If you search Pubmed for clinical trials, you’ll see the abbreviations ACR20, ACR50 and ACR70. That stands for 20, 50 and 70 percent improvement in symptoms. A drug only has to have 20% improvement for just some of the patients in the trial, to be considered successful. The higher the percent improvement and the more people who experience benefit the better. For me, the AIP surpassed these percentages.
Do I Wish I Started Medication Sooner?
We can second-guess ourselves and each other, but when it comes to autoimmune disease, outcomes are unpredictable. I’ve done a lot of research into RA medication, and the statistics aren’t encouraging. While rheumatologists tell us that early, aggressive treatment is the best chance of stopping joint damage and achieving remission, sustained remission is rare. The same is true for stopping joint damage – slowing it down is a more achievable goal, and paleo did actually do that for me. In addition, the drugs work at varied effectiveness from person to person: Only 1 in 7 people receive 50% improvement when taking methotrexate. 1 in 4 people receive 50% improvement when taking biologics. And that statistic increases to 1 in 3 when they are combined. This means that the majority of people aren’t reaching that level of benefit. In addition, pain remains a problem even when taking immunosuppressant medication. In a survey of RA patients, 65% need steroid and/or anti-inflammatory medication in addition to their immunosuppressants, and many still experience pain in spite of all the medication.
I don’t believe people should simply ignore rheumatoid arthritis, but you can see my reasoning behind trying paleo first. If I could go back in time, I would do the exact same thing. I needed to know what diet & lifestyle could do for me, before making any kind of peace with taking medication. That doesn’t mean I’m advocating this choice for others.
After seeing those statistics, you might be wondering why am I trying medication now? Because it’s possible I am one of the statistical minority. Many people come to paleo because the drugs fail to help them. I’ve never given the drugs a chance. And one thing the statistics don’t show is that sometimes through trying different medications, you’ll find the one that does work for you.
Here’s my belief: having autoimmune disease innately carries risks, and since there is no cure and also no treatment that’s guaranteed to be effective for everyone, every choice is a gamble. I made the best choice for me in 2012, and I’m making the best choice for me now in 2016.
Facing the Side Effect Fears
But it wasn’t just poor statistics that made me avoid immunosuppressant medication. It was also fear of the side effects. And it’s a very real fear that hasn’t gone away.
- Timing – While my doctor wants me to take all of these drugs simultaneously, I’m someone who needs to introduce one drug at a time, so I can feel how it works in my body before adding another. I’m taking methotrexate first and giving it two months to see what it can do for me on its own. If my joints continue to worsen, I will add the biologic. The prednisone is a separate decision. It’s designed to rapidly reduce inflammation in the body, but it doesn’t prevent joint damage, which is my main problem right now. Whether I take it will depend on how my symptoms progress.
- Methotrexate – Isn’t methotrexate a form of chemotherapy prescribed for cancer? While true, this is a misleading statement. When methotrexate is used as chemotherapy to treat cancer the dose is 100 times stronger. So, while it’s the same drug, it’s not the same thing. Still, it comes with a host of potential side effects from nausea to hair loss to mouth sores to liver damage. This is because it’s a folate antagonist – which is a nutrient that our cells need to thrive. This can potentially help RA by interfering with the cells attacking my joints, but unfortunately it also interferes with other cells such as those lining the gut, mouth, hair follicles and liver. Here are the steps I’m taking to minimize my side effects: (1) I had my genetic testing done, combined with a urine organic acids test to determine if I have any methylation problems. People with a double MTHFR mutation are more likely to have trouble with this drug. I have a single mutation, but my testing showed that my methylation capacity is currently strong. (2) My rheumatologist prescribed 800 mcg folic acid to help prevent/alleviate those side effects. I’m taking methlyfolate instead. Folic acid is a synthetic compound that the body has difficulty processing and can cause its own side effects. Folate is the natural vitamin found in many foods recommended on the paleo autoimmune protocol, such as chicken liver, dark leafy greens, broccoli, asparagus and avocado. I eat a lot of these already and will continue to do so, but I will need a supplement too. Methylfolate is a supplement that is bio-available (easier for the body to absorb and use). (3) I’m taking it before bed, to “sleep off” some of the side effects. (4) I’m also avoiding all alcohol as a liver protective measure. I only drank 1-2 glasses of wine/month anyway.
- Prednisone – This is a powerful anti-inflammatory that can save lives, but the damage it does to the body is very real. The potential side effects are too numerous to list. While famous for weight gain and mood swings, what scares me more is the risk of spinal fracture, cataracts, organ damage, developing diabetes, and developing an addiction to the steroids themselves. If I take prednisone, I will also take a bioavailable calcium supplement, continue my practice of getting vitamin D through sunshine, monitor my blood sugar, support my adrenal function and lower my dose if the side effects are severe. I also have no intention of taking this long-term. It’s designed to be a bridge medication to quickly reduce inflammation while giving the other medications a chance to work. The longer I’m on this medication, the higher the risk of damage to other parts of my body, and also the harder it is to taper off this medication.
- Biologics – While these drugs have the best statistics for slowing down joint damage, which is my goal, they also carry the risk of cancer, serious infection and even developing another autoimmune disease. That’s very scary. Thankfully, these are rare occurrences, but if you’re that rare occurrence, it’s no comfort. That’s why I’m trying methotrexate on its own first. But if I don’t respond and I continue to lose range of motion in my joints, I’ve decided that I will try the biologic. Unfortunately, there is no supplement to minimize side effects. Instead, I just need to watch closely and notify my doctor at any sign of a problem.
When Will I Know If It’s Working?
This is one of the frustrating things about immunosuppressant medication. You feel the side effects immediately, but it usually takes months to see if a medication is working or not. If not, you try another one, which again takes months. While some people see results right away, for others it can be a year + of experimentation. Usually, I write about my experiments after I have the results, but this experiment is going to take too long for that. I routinely get asked if I’m still medication-free, and I want to be open about this decision. I’ll write a follow-up post once I know my results – positive, neutral or negative. Send wishes my way for positive!
Making Peace with This Decision
Autoimmune disease is an emotional rollercoaster. I think we all know that. But this decision has been intense. If you’ve seen me post on social media about courage, stress management and self-care, this is one of the reasons why. I’ve been struggling with this choice for a while. I hope that this medication will help me, but fear that it won’t. I feel resentful that we’re given a Sophie’s Choice when it comes to medication – that in order to save my joints, I have to put the rest of my body at risk. My hope is that I’ll tolerate the medication with minimal side effects; my fear is that I’ll be one of the rare severe side effect cases.
So, what do I do with these conflicted feelings? I can’t hate taking this medication and expect it to succeed. The mindbody connection can work both ways – there is something called the “nocebo effect.” If I’m going to do this, I need to embrace the positive possibilities. So, I’ve been doing more meditation and visualization and focusing on self-love, but the technique that helped me most was a facilitated session of The Work by Byron Katie. My fears were so huge, I couldn’t see around them. The Work helped me see that they are based on a future that may never come to pass. It helped me make peace with the unknown. Now, when I take my medication, instead of saying, “I hate this!” I say instead: “I’m grateful to this medication. It will either help me or teach me.” No matter what happens, at the end of this medication experiment, I will know a lot more about myself and my body.
Judgment, Shame and Letting People Down
When you’re in a community of people striving to heal outside of the conventional medical model, there can be a lot of shame about taking medication. I think we’ve all felt it. I also think we judge ourselves far more than anyone else. We often take it as a personal failure when our autoimmune disease can’t be managed with diet and lifestyle alone. When others judge us, I think it’s a projection of their hopes and fears. Many of us want to be medication-free, so we can get upset when someone next to us starts taking medication. The mirror can be frightening. As a public figure in this community, I understand that people might take my experience especially to heart. If after reading this, you are feeling disheartened or discouraged that I didn’t achieve perfect healing, don’t let that discourage you for long. First of all, we are all unique. Just because I didn’t achieve a medication-free remission doesn’t mean you can’t. Secondly, perfection isn’t the only definition of success. I am still so far from the rock bottom of 2012. I’m not disabled. I’m not in excruciating pain. I have a full and beautiful life, and this new challenge and new decision doesn’t change that or take away the improvements I achieved through diet and lifestyle. Nor does it impact what you can achieve.
When I was first diagnosed with rheumatoid arthritis, I was anti-medication, believing it did more harm than good. Since then, I’ve communicated with thousands of people with autoimmune disease, and I’ve seen the full spectrum of experience and need for medication. I’ve written articles and social media posts, trying to remove medication shame, and others have done the same. It doesn’t mean I’m pro-medication now, even with my recent decision to try it myself. I know people who have had negative reactions, and others who don’t need it at all. I just think that as a community, we need to make peace with the complexity of autoimmune disease and autoimmune healing. This journey is about using all of the tools at our disposal to live the best life possible with autoimmune disease. Diet and medication don’t have to be either/or choices. It’s up to each of us as individuals to make the best choice for ourselves, and we shouldn’t be ashamed of (or shamed for) those choices.
As I step into this new frontier, I’m still a little sad and a little frightened, but I also encourage myself by remembering this:
- I’m a strong woman who doesn’t stay down when she gets knocked down.
- I’m a smart woman willing to search for her own answers and ask for help when she needs it.
- I’m a brave woman willing to face her fears head-on and step into the unknown.
- And I’m a loving woman who strives to lift people up, be honest about my journey, and encourage compassion for everyone, myself included.
Update: One Year Later
I wrote this article in 2016. In 2017, I wrote a new blog post sharing the results of my experiment (including the medication that finally worked for me). You can read the details here: Medication Update: Remission?
Disclaimer
This website has a disclaimer on its legal page that is always in effect, but since I’m talking about medication here, I want to remind everyone that I’m neither a doctor nor a dietitian. This blog is designed to chronicle my own health journey, share what I learn in the process, and connect with others on a similar path. Today, I’m sharing my experiences with medication decisions. In my next podcast, I’ll be interviewing others about their medication decisions (and they’re all quite different). This doesn’t mean I think you should imitate me or anyone else that I interview. We are all too unique for that. Always make your decisions in consult with your doctors. My blog is not meant to be a substitute for medical advice.
You May Also Be Interested In
I’d like to know where you are getting these stats: Only 1 in 7 people receive 50% improvement when taking methotrexate. 1 in 4 people receive 50% improvement when taking biologics. Those are not at all accurate.
Actually they are accurate. If you click the links embedded in that section of the article, they will take you to the medical studies including the statistics. That said, just because someone doesn’t respond to one medication doesn’t mean they won’t respond to another. It often takes multiple medication trials for people to find what works for them. If you read my update at the bottom of the article, you can read more about my journey, and the medication that eventually worked for me (in combination with diet and lifestyle.)
Thank you for your thoughtful reply, Eileen. If I were to do the antibiotic protocol, it would be done correctly for my RA, with my periodontal health being a lucky extra. At this point I plan to wait and see. The Orencia is kicking in, and also, with a rare (for me because I always refuse it) IM shot of cortisone as bridge therapy, I am enjoying relatively improved mobility. I just don’t want to risk losing what I have. Thanks for the website recommendation and thanks even more just for being there.
Therese
Hi Eileen- I have commented on this wonderful post before. Right now this is a shameless ploy to get advice from you. You and I have had very similar paths. I am four years into RA. I have followed an AIP diet from the very start. Methotrexate did nothing for me. After many failed biologics I am now on Orencia. Nothing is quite enough to get me into remission, and like you, I was very active. Have you ever done a post on treating RA with antibiotics? We often hear that RA may be tied to periodontal issues. I have nice teeth and what upon first glance, appear to be healthy, pink gums. However, I have a moderate amount of recession and even bone loss. I now see a biological dentist who did a deep cleaning and ozone treatments to kill oral bacteria. Interestingly enough, the antibiotic he recommends is the very same one that folks over the years have prescribed for RA- tetracycline family. Though a quick call to my rheumatologist resulted in “Go for it if they recommended it,” I am concerned about taking this step. My rheumy thinks nothing of gut health the way you and I do, and two years ago I went on an antibiotic for an upper respiratory infection and had a tremendous flare. BTW that’s the last time I’ve been sick, and I would love to stay that way. On one hand I have an opportunity to kill two birds with one stone if this is done correctly with guidance. On the other hand, I could ruin what I have by escalating my disease. Any suggestions as to where I should go or whom to consult with on this question? I wish I had an integrative rheumatologist but honestly don’t want to travel a distance and begin with another doctor. No worries if you feel you can’t respond to this post. it’s a little off topic.
Hi Therese. I’m not a doctor, so I can’t dispense medical advice. I can tell you that I’ve heard mixed reviews on the antibiotic protocol. Some people do very well with it, while others don’t. That sounds very similar to medication response overall, since every patient is unique. If you aren’t responding well to conventional medication, I totally understand why you’d like to try it. However, there’s a very specific way antibiotics are used to treat RA. I don’t think your dentist’s prescription would be the same thing. The website to learn more isThe Road Back Foundation, and they do provide a doctor list upon request. Best wishes.
Thank you so much for sharing this vulnerable post with us, Eileen. You are an amazing woman and I wish you much healing! I also wanted to ask you if you have ever considered trying cannabis? If you don’t have safe, legal access in your state, perhaps CBD oil will help. It is legal in all 50 states because it does NOT give you any ‘high’ or euphoric effects, but it can be very healing for people with autoimmune disease and chronic pain. I also hope you have researched into vaccinations and no longer take any sort of annual flu shot or boosters. They are strongly linked with autoimmune disease.
After 5 years, I’ve tried just about everything, and honestly medication was the right choice for me. I have no regrets, and I am enjoying remission. I actually did a podcast on medical marijuana, including CBD oil. Unfortunately, I respond negatively to both, but some of the guests I interviewed on that podcast have found them very helpful. Regarding vaccinations, it’s a complex issue, and I’m not against all vaccines. But like you, I don’t believe in annual flu shoots and have never received them. Wishing you wellness on your own health journey.
Hi everyone. I know you’ve been waiting a long time for an update on my medication experiment. That post is now live: http://www.phoenixhelix.com/2017/07/01/medication-update-remission/
Hi Eileen,
Thank you so much for your post. I was diagnosed with RA 5.5 years ago (though I think I had it for another 3-4 years before that) and it’s progressed quickly. I have several fingers which deformed and both my wrists are fused. I also have one shoulder that I can’t lift, despite regular exercise.
I went on AIP 18 months ago and did very well (even though I haven’t been as religious about it as you have), but I’ve been having a flare for the past 3-4 months and it got quite back the past 6 weeks. I am contemplating going back on medication – I say back, as I’ve been on it before, unsuccessfully (one biologics worked really well, but only lasted 3 months). I will discuss with my doctor tomorrow.
I take on board your comment about “nocebo” as I’ve always been of the view that medication had limited effect, so I will try and work on visualisation and other techniques. Have you posted any further updates since 2016 on how you’re doing on the meds?
All the best and thanks again, I’m so pleased I’ve found your blog (I had read about you a few times, but tonight is my first time on your site!)
Caroline
Hi Caroline. I actually have my medication update scheduled to post this coming weekend (7/1/17). Thanks to everyone for your patience! If you subscribe to my newsletter, you’ll get an email with the link. I definitely recommend the mindbody techniques, and you also might find medication is more effective now – combined with the AIP – than either diet or medication do on their own. Wishing you quick resolution of your flare, and pain-free days in your future.
Thank you Eileen for the post and comments! I’m really looking forward to your update on the medication experiment. I’m now 40 years old and have been living with RA since I was a toddler. There’s been different treatments over the years, mainly plaquenil, voltaren, physio, joint hormonal injections (since age 18) but not Prednisone (thank God and my wise mother), even took part in Enbrel studies for about 6 months while I was in the US. At age 29, I had my only child, and when he was 6 months old I broke my knee. That was my wake up moment to stop relying on joint injections at times of flares. I recovered somehow but was limping a little since then. I tried some alternative medicine and was avoiding rheumatologists until last fall. When I was one, she advised Metotrexate injections and knee replacement. I was reluctant to do either and soon developed a major flare. By February this year I was no longer able to walk because of pain and inflammation in my knee. I was able to address my inflammation levels with diet and supplements but have not still regained ability to walk because my knee got fixed at a certain angle and does not allow me to straigthen my leg yet. Not sure what happens out of this but hoping for the best. I’ve been doing The Work since 2015 but I guess until now I have never tried to combine different supportive methods. Now I am working to elaborate a combination that suits me best. I sure had a handful of lessons over the last few years. I am now about to start on The Myers Way in terms of supplements and hoping to have some body work done soon so that I can walk again. Knee replacement surgery might be something I have to do anyway. So I hope to hear from you on your experience with medications! Wishing you full recovery and an enjoyable level of health and activity.
Of course I meant when I went to see one))
Hi Valentina. Thank you so much for sharing your experience – it’s been a complex journey! It sounds like you’ve made careful choices over the years, and you are building the protocol that will support your body best. It’s good that you’re open to both conventional and alternative interventions. Joint replacement surgery can seem scary and it makes sense to try physio and bodywork first, but sometimes if the damage to the joint is severe, surgery can be the right answer. If it restores your ability to walk, that’s a gift. Wishing you wellness in every way, and thank you for your kind wishes for me.
Hi Eileen, I appreciated this post so much as I too find myself now on anti-inflammatory meds again for a Crohn’s flare (after about 5 years med-free) having followed GAPS for 2 years and now AIP for the last couple of months. Unfortunately, I was already having a flare when I decided to shift to AIP, but with meds it’s hard to tell whether it’s the meds or the protocol that’s helping (or both).
I’m very interested in what you wrote about hormones “shifting” and causing change in symptoms, as I’m convinced that menopause has significantly contributed to an increase in symptoms for me, and a change in my microbiome. I listened to your podcast on this with Dr Justin, but wonder if you might consider writing more specifically about this, or perhaps post some links? I find that anecdotal evidence of the link between menopause and a ramping up of autoimmune symptoms is quite difficult to find.
All the best as you continue to navigate your particular journey xx
Hi Sue. If you google menopause and autoimmune disease, you’ll find lots!
Thank you so much for taking the time to share your story. I was diagnosed 7 years ago after identical symptoms (that little pinkie!)…I too refused all drugs,was bullied by docs,family and friends but chose the alternative route…even tried stinging myself with up to 40 bees every 3 days one summer as one bee found that pinkie by accident and it’s little stinger was such bliss! Im from the uk but have been travelling the world on a boat last 10 years so RA and I have had quite the adventure. Some days I had to sail although couldn’t walk to the loo let alone pull a line in 😉 I rarely have access to Internet or healthcare so it’s been a very lonely path and there are no health shops out here so AIP was hell for me and I was drinking fish broth for breakfast lunch and dinner most of it 🙁 …I finally gave in to the big bad MTX in September after suddenly not being able to move my wrist at all and had to get a wrist op in Colombia. After just 2 months I felt like me again. For me personally it’s the best bullet I’ve ever bitten. I’m 36 but I just completed my Ashtanga yoga teacher training and I feel stronger than I’ve ever felt in my life. I’m both ecstatic and sad to say that my strict diet is over and I’ll probably never be Paleo again…I am really enjoying eating out with friends and feeling like a normal person again who can have the occasional piece of toast. I’ve almost forgotten I even have RA! I’m sure I’ll get back on the wagon soon but am enjoying this period of hedonism and normality – long may the healthy feeling continue for all of us!!!! Sending you a big spoon from across the Caribbean, sister!
Chloe, I’m so happy for you that the methotrexate has worked so well and so quickly. Paleo’s always here if you need it in the future. I’m combining the two, to help my medication work better, but I totally understand the temptation to just live freely for a while. Enjoy!
Hi Eileen-
I think of you often and hope it’s all working out for you. Any idea of when we may get a follow up on your medication journey? This post is so inspiring can’t wait to hear the other half!
Later this summer, Kami. I’m getting close!
I read through your post with great admiration, the fact that you are truthful and transpire in sharing your feelings. I’m going through a similar account here, not myself but my teenage son who has chronic eczema. Because I read so much about the side effects of steroid, we did not embark on the therapy at all since he had his flares in 2014. Instead, I looked into treating him via elimination diets, not AIP though, to no avail. His skin is at its worst since February this year. The eczema has spreader to more parts of the body. Seeing him in agony, we consulted a dermatologist last week, knowing very well what will be prescribed. It looks like I have to put him of western medication. The diet has failed us. However, my heart isn’t st peace like yours yet. I need time to come to terms that he will have to take steroid eventually… Your post connects to mine so closely. All the best to you in everything.
Hi Lim Mun Yee. Don’t see it as a failure. See it as a mother doing everything she can to help her son. That includes past efforts and future ones, and sometime medication has its place. If you haven’t listened yet, I recommend my Autoimmune Skin Conditions podcast. It has some great advice. Wishing you and your son health and happiness.
Dear Eilean
I am very sorry to hear about your health declining. I’ve been thinking of you ever since I came across your Post about going on medication.
I’d like to tell you that you are my inspiration and the guardian angel since my 24 year old son had been diagnosed with an unclear form of arthritis in March 2016. I’ve learned everything about the AIP protocol and the natural healing from autoimmune disease thanks to your website.
You’re writings, your experience, your recipes were all extremely helpful. They made me feel like someone is holding my hands and leading me through the maze. Thanks to the AIP protocol my son came off medications within three months and his arthritis is in remission .
I would like to thank you for all that you are doing for us all of us and in return I would like to share an information with you that I came across on the couple of days ago and it might be helpful to you and others.
It’s the Fasting Mimicking Diet and Walter Longo’s research on it. In this video he’s talking about the benefits of ketogenic fasting for cancer patients but he is also mentioning that it may help healing autoimmune disease as well. His theory is that while on fasting your white blood cell count drops when the body starts reproducing new white blood cells after the fasting those new cells are no longer autoimmune.
I was wondering if you have heard about this theory or if you have any information or experience in this matter. I just thought to share this information that may help you to find solution for your stubborn illness.
Hope I could be of some help and I’m wishing you all the best and fast healing.
PS I would like to see that Phoenix Rising!☺
Lots of love
Kornelia
https://youtu.be/d6PyyatqJSE
Hi Kornelia. Thanks for reaching out, and I’m so happy for your son! Ketogenic diets and fasting are controversial in the autoimmune community. Some people do feel great benefit. Others find that their health plummets. I did a podcast on the topic which you can listen to here: Episode 20. For me personally, neither fasting nor ketosis decrease my autoimmune symptoms. In fact, my inflammation increases, so it’s not the solution for me. But we’re all unique, so it’s certainly something others can try.
Thanks for your wisdom, honesty and bravery. I am new to this idea that ‘food is medicine’ and I find myself in the reverse scenario at the moment. I was on plaquenil and methotrexate since 2005 then in 2015 had more active joints and listened to my doc and dropped the plaquenil for a methotrexate and Enbrel combo :(. Before being diagnosed with RA I hadn’t even taken Tylenol so to becoming dependent on drugs… let’s just say I fought the concept of being on them the rest of my life. 13 years on meds is scary but at the time I listened to the docs regarding stopping progression…. yada yada I am thankful my symptoms are under control, however my digestive system is a disaster hence I’ve discovered AIP. I question if I’ll ever be off meds but it would be nice to back off of them a bit if possible!! It would definitely be nice to be able to eat food again and not have food hate me!
Trust yourself and your body / symptoms. My doc wanted me on an Enbrel and methotrexate combo right away. I read the side effects of both and said hell no. At that time biologics were relatively new as well. I challenged him and listened to my body and was able to stick to a methotrexate / plaquenil combo for 10 years. Not the best combo but in my mind better than the past 13 yrs on biologics. I’m now listening to my body again and I don t quite know what the future will hold… Best of luck to you as you journey through your meds! Thank you for the wealth of info you provide!!
Jenn, thank you so much for sharing your story and experience, and welcome to the AIP community! Many people have felt profound improvements in digestion on this protocol, and I hope you will, too. I love what you said about tuning into our bodies. That is so essential to these decisions. Wishing you good health in every way!
I love this post so much. I’ve been in the exact spot you describe, I also went on mxt and you know what? It totally worked, but I was still so against medication and feeling like a total failure for having to take it in the first place I stupidly thought I was better and quit it. Guess who’s feet are so sore they want to scream? I’d kick myself if it wouldn’t hurt my foot. I really hope it’s worked for you, and I really hope it works for me again. Hugs to you. I really need to know if there is a follow up post to this yet? Sending healing vibes to all. Autoimmune disease is not for the weak. Whew.
Hi Kami. We learn through experience, don’t we? Wishing you pain-free feet in the very near future. I expect to write an update to this post in the late summer or fall, when my medication experiment results will be more clear. I needed to try more than one before finding the medication that worked for me.
I am so appreciative for you, your blog and all of the information you offer for free and otherwise. Thank you!
I am currently at the drug crossroad because, unfortunately, AIP alone has not totally done it for me (help, but far from remission) and my joints are looking poor. I just wanted to follow up and see how you are doing? Was it a good decision? Have you experienced a lot of side effects?
Thanks so much!
Krista
Hi Krista. It’s a tough crossroads to face, but as you can see by all the comments above yours, you’re not alone! it was a good decision for me, but you need to be patient with the process. It takes time to determine if a medication is working , and it’s common to need to try a few before finding the best one (or the best combination) for you. As for side effects, the right medication for you should have side effects that are very manageable. If you experience uncomfortable side effects, work with your doctor on changing your prescription. Doing AIP first establishes a great foundation for this process. You’re used to being patient, tuning into your body, and making adjustments as needed. You’ve already reduced a lot of your inflammation at its root, giving the medication a better chance to work. And eating a cleaner diet is easier on your organs (especially your liver), so it (and your other organs) are in a better position to process the medication successfully. I recommend continuing with the AIP as you start your medication journey. Wishing you remission, and gentle hugs coming your way.
Hi Eileen
You have been an inspiration to me over the past year. Your podcasts initially gave me the belief that AIP would work and continues to give me encouragement when needed. AIP has significantly reduced my symptoms of AS and a part of that success it down to you. Reading about your latest update definitely wasn’t easy but not because you are any less inspiring but because it is just so unjust for someone who has given so much to the AIP community to now be facing the decisions you are facing. But hopefully this was a decision to had to go through to reach the next level of your healing. I’m sure I speak for many people when I say you are in my thoughts and wish you all the very best with your meds, I truly hope to hear good news.
Good luck
Jon
Jon, thank you so much for writing. The support I’ve received from our community has been beautiful, and I appreciate it more than words can say. One tip for you, since you have AS. Have you done a starch experiment? Many people with AS specifically find lowering or eliminating starch has a dramatic impact on their symptoms. You may have already seen these articles, but in case not, check out Charles’ Story and The Great Starch Experiment. Wishing us both wellness.
Thanks Eileen. Those articles are why I am already following AIP with very low starch so thanks again!
Thanks for writing this I’m facing a similar decision at the moment. I have stills disease and have resisted medications for 3 years managing with AIP and natural therapies. I am a naturopath and the aspect of letting others and also my own hard work down resonated. How are you finding the medication and side effects? The fear factor of this is making my choice difficult. Would love to hear of your progress
Hi Indra. I think one benefit of people like you and I facing this choice is that it might change the way medication is looked at in the alternative health community. I think it is over-villainized, which is why we have so much fear when faced with this choice. Yes, medications are often over-prescribed, but there are also times when they are absolutely necessary. Yes, side effects are a possibility, but there is also the potential for great benefit. If you feel you are on the cusp of trying medication, I recommend you look at it as a self-experiment – just like every other intervention you’ve used in your healing journey. Have patience with the process and know it takes a while to discern both benefits and side effects, that everyone is unique, and you might need to try a few different medications before finding the right one for you. I’m still in this self-experiment myself which is why I haven’t yet writted an “Part 2”, but I can say that I believe this was a good choice for me. The medications that had more negatives than positives, I stopped taking. And the newest medication I’ve been taking for the past few months seems to be working very well. While this is a really hard moment for you, I believe it will make you a better naturopath, because it will give you more understanding when you treat patients faced with the same choice. Wishing you wellness!
Dear Eileen,
I have been an avid follower of your wonderful podcast and first of all wanted to congratulate you on the amazing work you are doing with PhoenixHelix. Your views are always so refreshingly balanced and level-headed! I thought back to this blog post today because my rheumatologist basically yelled at me today, saying that he is tired of watching me get worse (I don’t necessarily see it that way), and that I needn’t come back until I want medication from him. I have seronegative arthritis and have been on the AIP for about 8 months now and dread the thought of drugs, but I can also see that they may have a benefit, and yes, it would be lovely to run again and protect my joints for the future. I think you were in a similar situation when you wrote this (slightly different maybe, less yelling, but essentially comparable?). I just wanted to check in with you – what are your personal thoughts on your medication journey half a year into it? What things helped you know whether it is the right choice (or not?)? Do you have any words of encouragement for me? I would really appreciate them right now. Much love to you and the community!
Hi Clara. Since the only help rheumatologists can offer is medication, some of them do get frustrated when we decline that offer. However, yelling’s not good! Finding someone a little calmer might be worthwhile no matter what you choose to do. I don’t think I can give you more information than I already wrote in the article in terms of my thought process leading up to this decision. As for the results, I’ll be sharing a medication update later this year when everything’s more clear. I think anyone who tries medication should expect a year of experimentation, navigating side effects vs. benefits and trying different medications until hopefully you find one (or a blend) that’s beneficial. So, I recommend patience with the process to everyone. I can say that I believe this has been a good choice for me. I have no regrets about this decision.
Hi Clara, I have had RA for 17 years and rejected medications for 15 of those. I am now on the Brown Protocol (roadback.org) and doing really well. Am down to 4 doses of 100mg of Minocycline per week. My Rheumy said I am a “responder” (this protocol works well for me) and that I am in “remission”. I believe that this protocol may have less side effects and is worth while to try before going into other meds like methotrexate, etc. You may want to discuss this protocol with your Dr. and find out if you are a good candidate. Wishing you best of health. Pat
I’m so glad I found this post! I can relate to the feelings that you are sharing so much! While I have not successfully been AIP for any length of time, I have be 90% paleo and I avoid foods that I know cause me problems. I am planning to go AIP soon – I just know now that I need to be more prepared and I am learning a lot from YOU!
I have RA as well and hypothyroidism which I suspect is Hashimotos but I don’t have an official diagnosis. Right now I am also being tested because I have 50% reduction in lung capacity and they can’t figure out why because it doesn’t seem to be scaring (which can be caused by RA) so they are looking into a muscular autoimmune disease. The are using letters such as MS and ALS and considering Lups and Myositis all of which scare me to death! After almost 2 years of seeing a Reumatologist I finally agreed to try a medication. She prescribed Celcept which is a drug they give to kidney transplant patients! I took one and felt so bad it scared me and haven’t taken another one. I told my doctor so she knows but I keep thinking that I should try again – afterall, we’re talking my lungs here…I need them to live! Thank you so much for sharing so openly – it is helping many people to make their hard decisions – like me!
Hi Karen. They are hard decisions, but you are so right – we need to protect our bodies as well. I’ll be writing an update later this year, but going on medication in addition to the AIP has been a good decision for me. Wishing you clarity on your own journey. Gentle hugs coming your way.
Has anyone tried Celatrin plus glucosamine (Natural Factors). Jean of Jeans Healthway, Ava, MO has success stories, and sent the product to us. My husband has had serious back and leg pain for a year, and within 24 hrs had relief. Studies seem to indicate it has healing properties as well as puttng the illness in remission.
I was just diagnosed with RA, and am going to start for a few months with Methotrexate, and then move onto these supplements plus the diet changes.
Hi Deb. Celadrin appears to be a brand name of myristoleate and other fatty acids. Most commonly you’ll hear it discussed on the internet as CMO. I actually did try that but experienced no benefit. Over 4 years time, I tried most things! I also asked about it in an online group for people with RA and no one who tried it felt improvements. Other supplements, like curcumin, seem to have more wide-ranging results. Curcumin doesn’t cause remission, but it often helps significantly with the inflammation and pain. Keep in mind that rheumatoid arthritis is an autoimmune disease, so it’s much more severe than simple chronic pain, and it’s more complex than simple arthritis. There’s nothing wrong with trying the Celadrin, but the diet changes have a much higher possibility of helping you than a supplement, in my opinion. I also recorded a podcast on supplements recently, which you might like to listen to: Episode 58. I know getting an RA diagnosis can be a devastating moment. Gentle hugs coming your way, and wishing you healing in every way!
Can I ask a question? I was wondering if, during your years of adopting healing diets if you leaned more towards veggies, Paleo, AIP or other. I also am wondering if, when you chose meat/meatbones, you chose organic/100% grassfed/other. I am asking because I am trying to determine how valuable meat products are to a healing diet and then how important organic/grassfed/pasture raised meat products are. My gut tells me they are important because to aim for optimal health I think the animals I eat should be in optimum as nature intended health and I have also notices that even when sticking to AIP if I eat out more I feel worse, even if the products I eat out are listed as “naturally raised” etc. I am curious about your experience with this.
Hi Kristen. I would call myself an Ethical Omnivore. I eat organically whenever possible and shop from my local farmers, where I know the animals are raised outside and treated humanely. While I do eat meat, vegetables are the foundation of the AIP Food Pyramid, so I eat a large variety of vegetables as well. I believe that combination is the best diet for our health. I have written an article comparing Vegetarian vs. Paleo Diets nutritionally, with advice for making the transition if someone is ready to start eating meat again. Here’s another excellent article on Eating Grassfed on a Budget. Lastly, to address your question about restaurants, I think the problem there is that you’re not in the kitchen, so you’re not in control of your food. Even if the chef is careful, a lot of other food is being prepared in the same kitchen and cross-contamination risk is high. So you might be getting trace gluten exposure, accidental nightshades, and the oil used for cooking can be anything from butter to soybean oil to industrial oils. For this reason, I rarely eat in restaurants. It doesn’t mean I never do, but the vast majority of my meals are eaten at home.
Thanks for the great articles.
Hi, just wondered if anyone had ever talked to you about Low Dose Allergen/Immunotherapy for your RA? I have read that it can get results for RA, although, it can take time and I don’t know if you can take it with the other meds. I have just started LDA/LDI treatment for my symptoms which include muscle stiffness amongst other things, and I have recently started an AIP diet.
You can find information here (if you don’t know about it already) http://www.drshrader.com/lda_therapy.htm and somewhere on the site he discusses RA and LDA and how early research showed the RA is associated with a specific bacterial infection. I apologize, I am new to your site and maybe you have written all about this elsewhere. I hope you are finding some success!
Hi Ruth. If your symptoms are just stiffness rather than pain, you have very mild RA, which is wonderful. You are wise to address it early. Unfortunately LDA/LDI is not a proven treatment for autoimmune disease. While it has been helpful in curing allergies like peanut allergy, autoimmune disease is much more complex than that. Clinical trials show that this intervention is just as likely to increase the autoimmune activity as decrease it, and success in animal models haven’t translated into positive results for humans. While Dr. Shrader says on his website that there was a study showing positive results for RA, if you look at the footnotes, he lists himself as the author and says the study was never published and therefore never peer reviewed. I’m not a doctor, and everyone needs to make their own choices about which treatments make sense to them. Personally, this isn’t a treatment I would choose. Have you heard of Low-Dose Naltrexone? It’s a mild prescription that works to naturally regulate the immune system in a safe way and one the most common benefits is relief of the stiffness you describe. It also tends to help or not work at all, without the risk of making your disease worse. I’ve recorded a podcast about it if you’d like to learn more: LDN with Dr. Thomas Cowan. Wishing you wellness in every way!
Hi Eileen, thanks for your comments. Yes, I do take LDN – it does help but it is not a silver bullet.
I don’t know if I have the beginnings of RA or not as i haven’t been tested. But my labs and symptoms do suggest I may be on the auto immune spectrum.
I am giving LDA/LDI a try to treat existing infections (mycoplasma, HHV6, Candida, Chlamydia Pneumoniae) and to see if it will bring down my general inflammation markers. I do see that Dr Schraeder might have a biased view though. That is a problem with frontier medicine, especially with inflammatory illnesses, there isn’t enough solid research and so much seems to depend on theories and clinical experience.
However LDA/LDI does require that you be off all anti-inflammatory medication and supplements for at least 3 days, preferably a week or more. I was thinking about this after I wrote my previous comment – for severe RA like yours this sounds like it would be difficult.
I am also very interested that your RA flared back again with perimenopause. Have you ever found any research about this? My symptoms definitely get worse pre-menstrually – after menstruation I can feel so much better but I don’t understand why this is the case.
Thank you again.
Ruth
Hi Ruth. Yes, I did a podcast on the connection between hormones and autoimmune disease: Episode 38.
Thanks Eileen, I really look forward to listening to it. 🙂
I hope the medications are helping you by now. You seem like a flexible and resilient person. I’m sure it helps a lot of folks for you to share your experiences.
Hi Mary. I plan to write an update in January, when there’s been enough time for the results to become more clear. Immunosuppressant medications work slowly, and there’s often trial and error to find a combo. that works for each of us. Thanks for your well wishes!
Eileen,
Thank you for sharing your journey. I was diagnosed with RA in April 2016. I had to wait for two months to see a Rheumatologist when my stiffness started in February so I started reading your book and many others. I started AIP right way and have been following the nutritional plan since February. My RA factor was 940 and my other number were very high when the RA doc took the first tests. I was told I had very serious RA and needed to be on Methotrexate and prednisone. Although the numbers were extremely high I never had the extreme symptoms. I had some stiffness and fatigue but never the completely “knocked down” symptoms or outrageous pain. I came off the prednisone in July . My doc just completed the Vector DA blood test and I scored in the high range. He just increased the methotrexate to 8 2.5 weekly. He has a concern my RA will effect my heart, lung, kidneys and liver. So I start 8 tabs today. I am concerned the 8 tabs will hurt my heart, liver, lungs and kidneys …. so it seems like a no win situation. My RA doc doesn’t think the AIP nutrition does any good. I do not agree I believe it helps and it is the only thing I feel I have control over. I also don’t feel the extreme pain and issues I read most folks have with RA ….. so keep giving the folks you positive information. Cooking the AIP way is my new hobby and fun. I wish I had the guts to only do the AIP and not the methotrexate but my doc won’t treat me if I go off the drugs. At least I am off the steroids!
Carrie, you’re doing wonderfully! Pain relief is one of the most common benefits of the AIP, and when it comes to RA, that’s huge. Even when I try, I can’t really explain in words the extreme pain I experienced prior to going paleo. So, you are ahead of the game. You can see by the comments above that many people do well with diet + methotrexate, so that seems like a very reasonable treatment plan to me. And it’s awesome that you’re off prednisone! Sending lots of love and wishes for continued healing your way.
Hi Eileen, there is a study that MTX, Plaquenil and azulfidine are as effective as Enbrel, a biologic. Really read the black box warnings. I now have demyelinating spine and brain lesions and am on disability after such drugs and didn’t even stop the RA destruction. I am inspired to get back to this diet after finding your website thru a pic on Instagram. I had mild improvement in the past after 7 months of Paleo, no dairy, no grains, no legumes, etc. My mistake was how I reintroduced foods so I will read your book. So glad you have your energy to provide all this info. Thank you!
Hi Maria. Thanks so much for sharing your experience and this information. My rheumatologist actually told me about that combination, but said they are slower-acting than the biologics, and some people actually have negative reactions to those drugs also. It’s all very unique and unpredictable, which is what makes medication decisions so difficult. I’m so sorry you had such a negative reaction to biologics. I can’t even imagine the shock, anger and grief you must have felt with that medication result. Sending a big hug your way and hopes that your future health journey is a positive one, where you feel a little better every day, until you eventually feel great.
Thank you for your honesty! I started a biologic medication for my psoriasis I had suffered si ce my teens, prior to my new understanding of nutrition. I am a dental hygienist and was experiencing sever joint/hand pain after work. I did not know there was a condition called psoriatic arthritis, with in 24 hours of my first injection my hand pain was gone.
With my new found passion for nutrition and getting my NTP certificate I decided to stop my medication, feeling like a failure because I could not control my symptoms with diet alone, I went back on my medication.
When I look at it logically, I feelso much better while eating a nutrient dense whole food diet, it is not a failure, what if it is the good diet that keeps the horrible side effects at bay.
Quality of life is very important, and when your AI interferes with that we need to reexamine our choices.
Thank you so much for sharing your story, Loriann. I agree that diet + medication can be a powerful combination, and I think your experience will make you an even better NTP! You have a compassion that will resonate with your clients, and you can help them let go of that feeling of failure that is all too common, and like you said – illogical.
Eileen,
Thank you for this post. It takes so much courage to try a new healing that includes something that may or may not work. I will send prayers and healing energy your way. I hope I am that percentage that doesn’t need meds but I know there may come a time that it is simply the best option.
Thanks again for sharing your journey.
Thank you so much, AnneMarie.
Respect and positive thoughts for you and the medical staff helping you. Thank you for sharing as you are an example to all of us with an autoimmune disease. Unfortunately there is not a one size fits all remady. God speed to the healthy pain free side!
Thanks, Connie!
Eileen, thanks for your honesty. Know that these types of posts make a big difference in a positive way. I recently resumed infliximab + azathioprine for Crohn’s disease after nine months drug free following a Paleo diet + supplements after a traumatic late miscarriage (or pregnancy, stress, or as my NP suggested, a “perfect storm”) triggered a flare. I felt like I had failed but was at rock bottom and didn’t feel able to handle the challenge of persevering with dietary and supplement management and waiting for the flare to pass. I “fell back on” a medication protocol that I knew worked for me, and worked quickly. Your previous post about combining diet and medication helped me make peace with this decision. I feel by far the best with this approach compared to either on its own and am going to stick with it at least until I am done having kids (in case hormonal changes bring more flares). Thanks again for making a difference.
Jenny, I’m so glad you have found what works for you and that your flare passed quickly. Wishing you continued wellness, and great joy in your growing family.
Eileen, thank you so much for this post, I found it at the perfect time. I have been struggling with Psoriatic Arthritis for several years. My Rheumatologist and I aren’t sure when it started, maybe in my teens, but it surfaced through fatigue and wide spread pain in 2007. I’ve been hesitant to take any meds aside from NSAIDs but even those hurt my stomach and started giving me kidney stone symptom and a few UTIs. I took Methotrexate for a while but thought that was contributing to my infections and so I got off it. Then, last year I experienced a severe flare with fever and was couch-ridden for a month with headaches and joint pain. Fast forward a year later, and I was diagnosed with severe obstructive sleep apnea and contributed my flare to that and got on CPAP therapy with no improvement in pain or fatigue despite compliance.
After a lot of research and statistics of untreated PsA, I realized my body needs help from medications in addition to following AIP. Needless to say, this has been a hard decision to come to especially in light of my recent CNS reactions to Cipro and Levaquin for a UTI, of which I could only take 1 pill of each before stopping, I had tingling, severe leg pain and tight tendons. Thankfully, I was aware of the possible issues with these drugs and stopped immediately and contacted my DR.
My Rhuematologist is recommending Humira which I start Saturday. While it makes me nervous and a little scared, OK a lot scared, I have to remember that the stats of being untreated and highly inflamed are just as bad or worse.
So thank you, thank you, and big hugs to you. I don’t feel so alone now and guilty for going down this path; I was feeling like a failure, as I was/am struggling to be AIP 100% of the time and just felt like giving up.
I pray that your RA goes into remission with just the Methotrexate and that you have few to no side effects.
Thanks again for your strength, honesty and steadfast commitment to being real, it really made a difference in my thinking and heart 🙂
Christine, thanks so much for writing. I hope the Humira works magically for you. You are not a failure in any way, shape, or form, and you deserve to be pain-free. Gentle hugs and deep wishes for healing!
Thank you so much for this post, Eileen. I’m a 26-year old, former All-American collegiate swimmer and environmental educator who has finally, after four years of struggle, begun to reach a state of “remission” w my RA (which for me, means I have the “whispers of RA” in my body as you described, but so much more functional). I too made the emotional decision to start methotrexate about a year ago. I simultaneously made the decision to reduce my work hours, as I was showing up to work every day in extreme pain with multiple braces on multiple joints. I absolutely love my job, but have always had an extremely strong mind-body connection (I think this was a strength as an athlete) and pour my whole self energetically into teaching– I needed the adjustment in order to offset how such a high-energy job drains me. As for the methotrexate, I’d changed my diet (from vegan to more paleo-ish), stress levels, etc… I’d been actively trying alternative therapies along w sulfasalazine / plaquenil for three years and came to a point where I decided trying this “next step” couldn’t be any less terrifying than living as sick as I was each day as a 26 year old (and I had fluid in my bones, which was a scary indicator that my disease had started to cause permanent damage). I initially took my first, once-a-week dose on a Saturday two years ago– and was knocked on my ass that Monday with the fatigue and waves of nausea (I was surprised, after emotionally building myself up to the point of taking the med, at the strength of side effects).
A week later, a family member unexpectedly took her own life. I’ve had many emotional traumas in my life for the past few years, but this level of emotional pain was so unprecedented that I decided to postpone the MTX — it just seemed like one more battle to fight, and as you mention in this article, I didn’t think it would be positive for me to take the MTX if I didn’t fully believe in it as a supplemental, healing modality in the treatment of my illness.
Anyways, I did return to the MTX about a year ago. I’ve always been a natural optimist and a firm believer in the power of mindset affecting cell response– which I feel like has drastically helped my sense of identity and illness despite severe flare ups over the span of years… but after my family member’s suicide, combined w the lack of RA progress despite alternative therapies, I was in a place of real hopelessness. I needed to think of the MTX as a form of hope.
I actually take the medication spread out over the course of a week– which has significantly reduced the side effects for me. I have had to stop it for a few weeks at a time and then restart it due to infections (I work in schools throughout the winter) and there have been various points where the “restart” fatigue has been something I’ve had to physically / emotionally readjust to. But I am FINALLY stringing together many months with no flare ups / no life-altering pain, and energy levels like I haven’t had in (honestly) years! I’m starting to reintegrate exercise regularly and reaping the benefits of endorphins (my old friends 🙂 ). I’ve had some busy stretches of time this summer, wherein at the end I’ll see the “whispers of RA”… for example, at the end of my most recent “busy stretch”, I woke up with about 15 small red inflammatory spots on my finger knuckles,stiff feet joints, & fatigue. However, I was able to nip the flare-up in the bud bc I’d planned a long weekend off of work and really stayed in bed for the bulk of four days. So my remission, to me, realistically looks like a heart monitor line that goes up and down slightly– as opposed to HUGE up and down curves!
Anyways, sorry for the super-long post. I’m toying with the idea of reaching out to an online community and sustaining some sort of Internet identity as I build my “remission” foundation. If you see this post, my question to you is: do you ever second-guess the idea that MTX is working? I’d suspected I have autoimmune issues for years and with the help of primary care doctor, approached these issues holistically & systemically for years. About 4 years ago these issues began to manifest aggressively in the form of RA, and as mentioned, I’ve taken medication, adjusted my lifestyle and diet, etc. There are times despite these responses I feel like my RA flares still happened incredibly RANDOMLY over the years, and sometimes I have this deep dark fear that my recent shift towards health is just another random swing in the course of this sometimes unpredictable illness… and in the meantime I am hurting my body with this intense medication on the side! I know this is not a healthy thought to have, but it does pop up every few weeks. Getting myself to the point where I am physically balanced w RA and mentally balanced w traumatic grief has been such a long journey, I feel the healthiest choice for me right now is to continue thinking of methotrexate as a healing modality (and, truly, ive seen MAJOR differences in health this year!). But still these fears lurk.
Thank you so much for this blog, your resources, and opening yourself up so honestly in this space.
Erika, thank you so much for sharing your story, and I’m so happy for you that you’ve received such benefit through not only the MTX but everything else you’ve done to support your health over the years – mentally, physically and emotionally. I love how you describe your new RA “heart monitor” line down at the whisper level. To answer your question, I think it’s natural to question cause and effect when we have autoimmune disease, because it does have an unpredictable nature. That said, I think you are very tuned into your body and you’ve seen dramatic improvements specifically since you added the methotrexate. I would trust those improvements, but also give yourself credit for your amazing attitude and approach to health over these past 4 years. Everything works together. I firmly believe that diet, lifestyle, mindbody, and medication are complementary treatments. Each one makes the others more powerful.
Hi Eileen,
I want to support you in every way-including your latest decision on meds. Your instincts seem spot on so I hope and pray this will take you further on your journey. Sorry this support is so late but our car (and me) were totaled in June. Not our fault, but that doesn’t lessen the pain, toil and trouble! I was going for treatments 3 times a week and naturally the pain and physical limitations threw me for a loop. Staying on the diet, treatments and surviving were paramount, so I dropped on line reading, etc. to have more time to drag the body into the kitchen for aip paleo cooking. I’m almost 75, and under 5′ tall so seat belts and air bags just aren’t as effective. It was death by bruising! Also lost a tooth, developed cellulitis and HAD to use antibiotics and of course that isn’t helpful for someone battling IBS. Though my proportions were not always just right, at least I stayed on rigid foods allowed on AIP/Fodmap and am sure that is why I am coming through a severe trauma as well as I am. We had our two precious grandchildren in the car so that was trauma and worry times 10! Only now, after 2 months, can I talk about it without a few tears welling up. Treatments are down to 2 a week and range of movement is coming back so the first thing I did was check Phoenix Helix. So sorry for your more than difficult detour on your path, but my admiration for you grows with the way you are tackling this “bump”. Wish I had known sooner but all your followers know that knowledge, wit and wisdom go into all your decisions. God bless!
Barbara, I feel you just reached out and gave me a big hug. What an amazing woman you are! I’m so sorry to hear of your accident, and so impressed that you made the effort to stay AIP through the healing process. I agree that extra nutrition is surely boosting your healing, and your priorities were perfect. Less online reading, more focus on what was absolutely necessary. I’m honored I was the first blog you clicked to once you came back online. Sending a hug to you, and gratitude that you and your grandchildren are all right.
I just stumbled on your wonderful blog and saw this post. I feel like we have been living parallel lives for a couple years, as you described the onset of RA, and living with this disease so perfectly. I too was a very active, healthy, athletic woman who was overcome with a severe form of this disease. I started AIP a week before my initial rheumatology appointment in June 2014, and remain on it to this day. Despite that, I began the traditional protocol of methotrexate and occasional prednisone, adding biologics four months later. I went downhill steadily, using crutches for my cantaloupe-sized knee, and began to improve after the third biologic, nine months later, never knowing if it was the meds or my AIP that was helping. When I removed methotrexate last summer (remaining on the biologic), my improvement escalated and by January 2016 I felt as if I was in some level of remission, except for those “whispers” you described. Unfortunately, being immunocompromised, my dear family doctor prescribed Augmentin to help clear a URI. Two days later, it all came crashing back, and seven months later, I am still suffering. I don’t fault my doctor. He was protecting me the best way he knew how, but the road back has been even bumpier than my initial road, with the migrating inflammation and trouble walking, driving, eating, sometimes breathing (chest cartilage) and all the while attempting to maintain my work schedule at a job that I absolutely love. I feel like I got there once and I can get there again. I do not have a functional medicine practitioner. They are hard to come by in NY State. My husband and I are willing to travel anywhere. Do you have any suggestions? Also, do you know of rheumatology practices that are more cutting edge with regards to openness to AIP and other alternative treatments? I congratulate you on your tough decision and I admire your strength. You have all the tools to do well, and complementing your program this with meds just might be the boost you need now. Nothing is permanent. Changes can always be made. We both know this is an ongoing journey, and I wish you all the best on yours.
Therese, thanks so much for writing and sharing your story. I recently interviewed a paleo rheumatologist on my podcast, and many listeners have since become her patients. I’ve heard nothing but wonderful things about her. You can listen in iTunes, Stitcher or through my blog: Episode 49: Rheumatoid Arthritis with Dr. Melissa McNamara.
Thank you, Eileen. I explored your blog further and also listened to the Dr. McNamara podcast. I always found great support for AIP online, but with your blog, I feel like I found a home.
All the best,
Therese
Therese, your comment made my day!
Dear Eileen,
I only read your amazing post today (I follow you on Instagram – my account there is called /naturewalks_and_healthyeats/ – but somehow missed this important post) and wanted to share my thoughts, in hopes that they may be of some help. First, thank you for all that you do – producing such well-researched, sincere and eloquent posts and podcasts. You are an amazingly intelligent person and in touch with your feelings – a winning combination! This post was no exception, and it gave me pause since both my daughter and I are currently trying to reverse our autoimmunity with the AIP diet and some medication. My daughter’s functional medicine doctor has warned her when she accepted her as a patient, that autoimmune conditions are very hard to reverse with only diet, and from your post I see how true that is. Although, in my daughter’s case she has something to work with – her Nutraeval test showed some major problems. Something has to trigger the immune system to overreact, and my thinking is that in your case it may be constant environmental exposure – that you may not realize affects you detrimentally. You see, we also live in the Blue Ridge Mountains area and love it, moved here ten years ago and in that time every one of our family members developed more or less devastating autoimmune conditions here, severe environmental allergies, too. This area is famous for its biodiversity – many plants bloom and grow here, and this may be a constant trigger for the immune system to overreact. We are moving away soon to be closer to my husband’s job, so we’ll see if the change of place has any effect on us, I hope it does! Although we are moving within the state, friends have told us that people have had to move as far away as Colorado to finally start to feel better. I believe this may be one thing that tests you had didn’t take into account. I love the mountains dearly and am outdoorsy person myself, but living here made me so much worse in terms of developing new and unexpected illnesses. I guess being originally from Russia doesn’t help either, the heat and humidity may not agree with us, Northern types 🙂 Hugs from Tennessee
Hi Anna. I’m so sorry you and your family had such trouble with the local environment. I do have friends who have reacted similarly and had to relocate. In fact, one is moving to Arizona next week. She has allergies and respiratory issues year-round from all the moisture and biodiversity, and with that came digestive issues and chronic fatigue. When she vacationed in Arizona all of her symptoms went away. I’ve never had that reaction. My body really does love it here in Appalachia, and when I’ve lived in drier climates, that’s when my body really starts to rebel. My heritage is Irish, so genetically I’m programmed for lushness and moisture. I’m glad you brought it up, though, because I think you’re right that we all thrive in different places. Some of that is based on climate, some on plant life, some on population density, some on electrical sensitivity…the list goes on. There are so many factors that influence a home. May we all find a home that promotes healing.
Amen to that! Lived in Southern Californiafor some time before moving to South East and the dry climate there didn’t agree with me either. Still looking for a happy medium. Thank you for your response, Eileen, and glad that you have looked into that issue as not to miss ways of achieve healing by removing possible triggers.
Hello Eileen, I just found your website via your Datis interview. I am moved by your empathy, honesty, perseverance, intelligence, and communication skills. Thank you for sharing your life in such detail providing education and inspiration to others.
What a beautiful comment, Evonne. Thank you!
Hi Eileen, I was diagnosed with RA in 2013 after my second son was born. I was able to manage with some slight diet modifications, supplements and essential oils. After having a complete hysterectomy last year I started feeling my RA symptoms more often. I finally came to the same decision last month to begin methotrexate. I was in so much pain, had so much fatigue, depression and two boys (5 & 3) who need their mom! I had a lot of guilt, “should’a, could’a, would’a” thoughts cross my mind and even shame about taking meds. I just happened upon your article today and I can not begin to tell you what it has meant to me to read it!!! Your honesty has been a blessing to me and I honestly feel better about my decision after reading your post. I’m still waiting to see how the MTX will work for me as well. I pray we both see amazing results!
I wanted to ask you if, if you don’t mind, if you were still taking the LDN along with the MTX?
Thank you so much for writing this and sharing your experience!!! Blessings!
Sandra, thank you so much for sharing your story, and I’m very glad this post reached you at the right time. To answer your question, I’m continuing the LDN for now. My goal is to stabilize with the medication (hopefully feeling much better), and then experiment to see if I still need the LDN. They work on totally different pathways, so they may be complementary treatments. But it’s also possible the LDN will no longer be necessary. Time will tell.
Yes, that is what my functional med doc told me. That they worked on different pathways and they would complement each other. Here’s to finding what works for each of us. Thank you again!
Eileen, I cannot thank you enough for your transparency. I cried and cried when the doctor told me that I needed to be medication. “Why are you crying?” she said. Although in crippling pain, I was reluctant to try medications until I heard “RH causes more side effects than methotrexate.” The shift of mind was immediate. Thanks for sharing your inspirational story with us.
Isabelle, I’ve cried a lot through this process, too. My current rheumatologist is a compassionate and kind woman, yet I still felt traumatized after my first appointment with her. I asked my husband why even when a doctor tries to be gentle, the information is still so hard to hear. He said: “RA is horrible diagnosis. Of course, it’s hard to hear.” That was so simple and so validating. I’ve made peace on so many levels, but apparently some levels still remain. And you are so right – that shift in mindset is another simple one, yet so powerful. Thanks for sharing.
Thank you so much for sharing your struggles and triumphs. When our genetics and our environment make it difficult to be healthy, then we can be thankful for the medications out there to help us. I was so discouraged when I was told I needed to take my biologic weekly instead of bi-weekly when my psoriatic arthritis and skin lesions flared this year. My husband reminded me what his doctor told him: his diet and exercises delayed his need for anti-cholesterol and anti-hypertensive medication for many years. Autoimmune diseases are no exception. It really sounds like your physicians are truly there for you. Your website has been so helpful to me in my own struggle to be healthy. Thank you. I wish you luck and strength to keep going.
Thanks for sharing your experience, Marlyn. You and your husband have a wise and balanced perspective.
Thank you, from the bottom of my heart, for sharing this so beautifully and honestly. I tried AIP when I was first diagnosed with RA 3 years ago, but X-rays showed significant joint damage in my feet after just 6 months without medication. I made the hard choice to start medication and it has been a difficult road with methotrexate, biologics, resulting infections caused by the immune-suppressants, and courses of prednisone. I stayed Paleo the past two years, but was too disheartened and disappointed that AIP didn’t “put me into remission” the way others experienced to continue. However, this spring, after a beyond difficult winter and pneumonia, I committed to AIP again. I continue with now a lower dose of methotrexate, moderate daily exercise, and I am trying a different biologic. Your mental attitude that you shared about the medication above is life-changing for me. I do think I still harbor so much fear towards the medicines…based on side-effects, resulting illnesses, and even feeling like I ‘failed’ to heal my gut. Thank you for sharing, and I do hope that you find a combination of medications that helps restore your body to better function.
Will you continue with LDN? I have considered pursuing that option in the future. And I also take that same bio-available version of folate 🙂
Hi Alexandra. Yes, I plan to continue with the LDN for the time being anyway. It does provide some benefit with no negative side effects. Thanks so much for sharing your story, and I’m so glad this post resonated with you on such a personal level. I hope the new biologic works very well for you, and I love the holistic way you approach your health. Just add some extra self-love and remove any self-judgment. With all you’ve experienced, and all the things you do to support your health, you are admirable! Sending a gentle hug your way.
Hi Eileen, thank you so much for your post, I can’t even imagine how hard of a decision this has been. I just discovered AIP a few months ago but had been following a similar elimination protocol from Amy Myers for about a year. I know you’re getting a lot of suggestions on here and I don’t doubt at all that you’ve looking into all the options prior to deciding to try to medicine route. I hesitate to offer another suggestion, but I’ve been looking into this option myself and was really curious if you’ve investigated water fasting at all as a treatment option? I know it sounds extreme but there seems to be good evidence that it’s especially helpful in Rheumatoid Arthritis. The evidence suggests that when the body is fasting and not tasked with processing food that it can instead focus it’s resources on healing and is especially helpful for healing leaky gut. There are a number of physicians that have experimented with this protocol Dr McDougall; Dr Joel Fuhrman; and recently i’ve been hearing a lot from Ray Cronise as well, with good success. I thought I should at least mention it in case it’s not something you had heard of. Wishing you all the best on this journey of healing.
Hi Helen. One of the characteristics of my body is that my phase 1 liver detox is faster than phase 2, and that means fasting is actually toxic to me. It releases toxins in my body faster than I can process them, which is why I feel like death warmed over any time I fast. The other problem with water fasting is that it isn’t a cure for autoimmune disease. Some people may feel better temporarily, but you have to eat again eventually, and usually your symptoms return very quickly. That’s why I recommend a nutrient-dense diet for healing rather than a fasting protocol.
Have you tried scaling introduced foods back to basics.
No sticky rice. No pseudo grains. No histamine foods
No sugar. No starchy squashes. Just low oxalate greens and meats fresh livers
And no eggs. No night shades.
You are an inspiration to us all. Best wishes in finding balance.
I had to restart bedtime .5mgativan to get enough sleep hated that. But
No sleep even on severe a restrictions was
Taking my life away.
Doing better now.
Hi Harriet. I’ve tried a number of food experiments over the years and definitely know my body’s triggers. However, I don’t recommend anyone combine all of the restrictions you listed for two reasons: (1) Nutrient deficiencies will develop and (2) It can cause a lot of mental and emotional stress, which is its own trigger for autoimmune symptoms. Sometimes we just need to accept that autoimmune health is about more than just food intolerances. I still believe in functional medicine and now conventional medicine when appropriate. I’m glad you’ve started to get some sleep again. That’s so important for autoimmune health also.
I have been on Remicade + methotrexate for almost a year now doing well, but I still have some small swelling in my elbows. I am very interested in the promising areas of Helminthic therapy, Fecal Microbiota Transplant (FMT), and Ozone therapies. I am very anxious to try any one of these three areas to permanently put my RA back into remission. The problem being insurance will not cover any of these because of their “experimental” status, yet they will pay $5,000 a month for Remicade. Doesn’t really make sense to me.
Hi Andrew. I did a podcast on FMTs that’s definitely worth a listen. It’s a fascinating treatment that can reduce autoimmune symptoms when gut dysbiosis is part of the picture, but it rarely achieves remission. Sometimes we have high expectations for these lesser known treatments. They’re helpful, but they’re not a magic bullet. That said, I’m looking forward to more research being done so that it’s legal to use them in the US for many purposes, including autoimmune health. In the podcast, I do interview a man with MS who talks about the difference it made in his health: Episode 19: Fecal Microbiota Transplants
Thank you for this! I’ve been following AIP for over two years, and I’ve been working with a functional medicine doctor for about 6 months. He’s recommended I also meet with a rheumatologist, but I’ve been terrified of what I’ll find out so I’ve been avoiding it. Medicine scares me. I needed to hear what you wrote about surgery being worse. I don’t know that I’m at the point yet where I’m ready to try medication, but this had has encouraged me to at least go hear my options. I am curious how you’d recommend I find a good Dr who will at least acknowledge diet and alternative options can help. Before I started AIP I saw a rheumatologist who said diet would make zero difference. I started AIP and went from barely being able to walk to getting my life back. I live in NYC so there is no shortage of options. I just don’t know how to start looking. Thanks again for your words!
Hi Laura. That’s a sign of a very good functional medicine practitioner that they gave you a rheumatologist referral. That shows a complete understanding of the challenges of autoimmune disease and a willingness to use all approaches to help you. To answer your question, I do have a very small list of Paleo-Friendly rheumatologists, but they are rare. However, as more and more of us talk with our doctors about the AIP, some of them are becoming more open. Give yourself permission to meet with more than one rheumatologist, if the first one isn’t a good fit.
Hi Eileen
Very well written post and can completely understand and respect your decision. I just thought I’d share something which may or may not be helpful – as an akylosing spondylitis sufferer, the AIP didn’t seem to improve things very much however, through trial and error I discovered that I am very sensitive to salicylates. This article in particular things moving in the right direction for me to the point that my pain levels are now down significantly:
http://fedup.com.au/factsheets/symptom-factsheets/arthritis-joint-pain-and-diet
Hi William. Thanks for sharing your story. It is true that tweaks to our diet like this can make such a difference. While I don’t have an issue with salicylates, I do have to watch my starch intake, which is also common for people with AS. There’s a lot of experimentation on our journey to feel our best. I’m so glad your pain levels are down!
Without wishing to teach granny to suck eggs (do you have this expression in America, or is it just a British thing??), do you know about Alan Ebringer’s work on krebsiella and starches? In Carol Sinclair ‘s book based on his research she talks about not being able to tolerate the slightest starch. Not even a carrot. Though carbs were ok. Sorry if this is old news, but I did a search and didn’t see that you had mentioned them anywhere.
I hope you can find the root cause. And like everyone else I really wish you well.
Hi Ali. Did you read the article I linked above? It’s called My Great Starch Experiment and I went into detail on how starch affects me personally. We are all unique – my health plummeted on a no-starch diet, but I do best on a low-starch one. I know other people who actually need starch to feel their best, and others like Carol, who do best on a no-starch diet. I think it’s a good experiment for everyone to do. Klebsiella is linked to a specific diagnosis: Ankylosing Spondylitis (which I don’t have), and klebsiella didn’t show up in my own microbiome tests. Do you have AS yourself, Ali? Do you find that no-starch works best for you?
I am really sorry!!! I knew you would have been way ahead of the game!! I did a search on Ebringer and completely missed your starch article just shows how searches don’t always find the right answers. What a shame. Another theory bites the dust.
I have RA, and Sjogrens (both relatively mild) and I am very overweight (all my life). No starch diet seems to help, but weight is proving very hard to lose despite being gluten free for three years (and as of two weeks ago thanks to an IGG test that showed reactions) sunflower, almonds, eggs () and cow casein. Now wondering what on earth I can eat.
Just did the amylase in saliva test (eat something starchy, don’t swallow, and see how long it takes for the taste to change). No change at all. Implying that this maybe part of my equation. Hey ho….
Healing is a journey, isn’t it? So much to learn about ourselves! It sounds like the Paleo Autoimmune Protocol would be worth trying for you, Ali. While it didn’t cure my RA, it made a huge difference in my symptoms. Here’s an article to give you a quick overview: What is the AIP? And here’s the book: A Simple Guide to the Paleo Autoimmune Protocol.
Hi Eileen
Thanks for your wonderful concern for us all, and your great suggestions. But at the continued risk of telling you the bleeding obvious, did you see the research that has just come out about this implant that has been shown to work successfully on some people. It looks interesting…
http://www.telegraph.co.uk/science/2016/07/07/electronic-implant-in-spock-nerve-could-reverse-rheumatoid-arthr/
Hi Ali. Don’t ever be afraid to share information. 🙂 I have heard of this technique in case studies before, but I believe this is the first multi-person trial. It is fascinating, isn’t it?! If people are interested in reading the full study text, here it is: http://www.pnas.org/content/113/29/8284.full . Since this study is preliminary, it will likely be quite a few years before the treatment is available for us to try. But we can do things to stimulate our own vagus nerve, such as gargling and singing, believe it or not.
Thank you so much for being honest and sharing your journey with this. It is such a hard decision! I put off medication for my mast cell issues / IC as wanted to do it without, but finally hit a point where i couldn’t do it anymore and diet wasn’t going to be enough. The meds didn’t help 100%, but they gave me my life back, and enough breathing space to keep explore other natural healing and most importantly enjoy life again, be there for my family, work etc… but most people don’t share how hard these decisions are…thank you for doing that.
Anastasia, thank you so much for sharing your story. I love how you put that. Here’s to breathing space and enjoying a fuller life!
Eileen, your courage, honesty and vulnerability brought tears to my eyes. Which says a lot as I have Sjoegrens! 😉 I have been following your blog 18 months and inspired by you and other amazing women I have cut down my RA medication significantly by sticking to the AIP for that time. I have recently started writing a blog myself as I thought I need to share my experiences too. I know how hard and important it is to be totally authentic around this and you have inspired me greatly. I do tend to hold very high expectations of myself and you have helped me remember that you never know what is coming next. I just accepted my pain and diagnosis before I knew about AIP but when I read about others’ improvements it completely changed my paradigm, which has been a blessing and also caused frustration when improvements didn’t happen as quickly as for others. Thank you for reminding me that we are all unique in our responses and all have our own journey to follow. Blessings on you and your family.
Aoife, thank you so much sharing your story. It sounds like you’ve had great success with the AIP, just not perfection. May we all be kinder to ourselves. I would love to check out your blog. Please share a link!
Eileen! Thank you for all your efforts and creativity to bring the Autoimmune Paleo diet to life for us all. Your commitment to provide step by step guidance and all the fantastic podcasts has been soooo impactful for me. I was on boatloads of medications and infusions…. and referred by my Stanford G.I. to a surgeon for a colectomy. AIP has made all the difference! Two years later I still have my colon, feel great and am on a low dosage sulfasalizine and off all the rest. I don’t know what tomorrow will bring but I feel so fortunate and appreciative for all your help and support! Best wishes to you Eileen for rapid stabilization and wellness!
Tom, what an inspiring story! Thank you so much for sharing, and for your well wishes.
This is a big enough decision without feeling the possibility of being judged, either by the medical people or the alternative therapy people. I stopped taking meds about 4 months ago, but I’m not telling my rheumatologist because I am over the judgements. I will tell her if things go pear shaped! And I cheat on AIP sometimes. So there!!!!! Good luck with it – make your own destiny.
Ann, you are awesome. Thanks for your honesty. Here’s to life in the judgement-free zone!
Thank you for sharing your story! We all have a different journey and I’m grateful for the prednisone that’s helped with my RA a few times as well as plaquenol and now trying Paleo. With no cure, we do what we have to do for the bed quality of life! Best of luck!
Exactly, Tracie! Thanks for sharing your story. I hope Paleo works beautifully for you.
Your honesty and forthrightness continues to inspire me as I explore the AIP diet, and my own body’s evolution. I will never be able to thank you enough for all that you do for our community. Without your experience, and your willingness to share it with us all, we would ALL be far less knowledgeable. Be well, Eileen!
What a beautiful comment. Thank you so much, Jan.
Eileen, I am sorry your recovery is compromised due to your changed hormonal situation, but you are helping me tremendously. I have followed AIP for almost 2 years now, faithfully, made huge lifestyle changes, and still remain on methotrexate, prednisone and, to my horror since November of last year, Humira. I was angry, depressed and terrified. I wondered why I got no recovery (I did see improvements in other areas of my life, however). I did wonder if it was my age – I’m almost 60, and of course I’ve been post-menopausal for over 10 years. And now that I read this blog, I see that it’s not my fault, I did all I could do, and it’s about the hormones! I’ve been blaming myself all this time. Well, here’s the interesting thing. when I started on Humira, I astonished my rheumatologist because the day after the first injection, I was 50% better. the day after that, I was 95% better and have been there ever since. My rheumy told me it would take 1-3 months to see any difference. When I told her how fast it took effect, she wanted to know what I was doing differently. I told her it was autoimmune paleo diet and lifestyle. I told her that AIP “cleared the decks” so that the medication would work better. And incidentally, I’ve have none of the scary side effects – no colds, no flu, no infections, and so far no additional autoimmune conditions. You just have to take extreme precautions – wash your hands all the time, do not kiss anyone, discreetly wash your hand after shaking hands with anyone, etc. This is your chance to help all of us out here who have been AIP compliant but our hormones prevent us from seeing the recovery we should be seeing. THANK YOU!
You’re welcome, Tommi. Your symptoms are absolutely NOT your fault! Thank you so much for sharing your story. It’s wonderful to see how well the Humira is working for you alongside the AIP. Wishing you a full and beautiful life.
Hi Eileen, pained to read your recent blog. Glad to hear that you are keeping an open mind. After 12 months of being diagnosed with RA and 9 months of AIP I had to resort to MTX . AIP certainly helped but was not enough. One has to weigh the risks and benefits – ultimately it comes down to this. I am continuing the AIP diet but am now being more flexible especially when I have to eat out.
You are a brave and smart woman and will do well. Thanks for everything you have done and continue to do for the community.
My sincere prayers for your continued good health.
Take it easy and stay active. Try not to define yourself by RA. I find myself many a time doing the same and have to draw myself from this mind set.
Warm regards,
Sudha
Thanks for writing, Sudha. I’m glad the medication is working well for you. Thank you for the prayers. Sending the same to you!
What a great post Eileen. You pretty much covered everything and it was so helpful to me. I also have an autoimmune disease and I struggle everyday wondering if what I am doing is correct. I am following SCD/Paleo and I am on no medication. It scares the heck out of me. When I was diagnosed in 2011 I went on medication briefly for about 5 months a form of a milder Pred. Endocort. I felt pretty good and felt no side effects while on it but internally it did take its toll on my bones and now have Osteo. So I am still battling on what to do. I feel good and the SCD helped me immensely with supplements added so now I can actually venture off and do more Paleo. But wondering even though I don’t have a lot of symptoms from the disease I still have some and wonder if my body internally is healing. So it definitely is a emotional one and sometimes I wish I could put my brain on a vacation and not worry about food, supplements etc. I mean sometimes I think its crazy, I never thought about food ever before being sick. You just make your meals and that’s it. Now if I do go more towards Paleo, I actually feel like I am cheating because I was so obsessed with staying true to SCD. I am hoping someday I can just eat and not feel anything emotionally. Best wishes in your journey and I love your post.
Marsha, thank you so much for sharing your story. My advice on diet is that personalization is key. So, don’t worry so much about rules, but rather see it as an experiment. You’ll find the foods that work for you and the foods that don’t. Are you familiar with the food reintroduction process? That can help you figure out what SCD rules work for your body and what paleo rules work for you body too. As for worry, I think we can all do too much of that! Meditation helps me – both to calm me down – and to help me make decisions when that time comes. Sending a gentle hug your way.
You are one special lady. I met you at PaleoFx in the Paleo Magazine booth. I admire all you have done and are doing. Many blessings to you!
I remember that, Stephanie. It was lovely to meet you!
I love your thinking and your courage and your humanity and your clarity and appreciate so much hearing about your thoughtful process. I’m sorry if you feel that you need to defend your decision to anyone! As someone with Hashimoto’s and a history of Reactive arthritis, whose symptoms got worse during peri and then menopause (especially joint and tendon issues. Who knew you needed estrogen to lubricate a shoulder joint or hamstring?) I use it all- diet, functional medicine, at first only Armour thyroid, then levothyroxine, too, meditation, movement, Chinese Medicine, heavy metal chelation, homeopathy and Advil, when needed. I’m an acupuncturist, and people will say, “If your diet is working, why do you need to take medicine still? And why do stay on such a strict diet if you have to take medicine? And why isn’t acupuncture curing everything you’ve got? ” I say, “I no longer have anti-bodies but if I stop my diet, I’m sure I can get them back again in a pretty minute. And really folks, it is not a moral or physical failure to take medication. Some of modern medicine is a beautiful thing- use it wisely and when needed and it can be a strong ally.” I applaud your thinking and care with yourself, especially on starting one drug at a time so that you can feel your way through this. I am sure your attitude and your gratitude towards the metho and whatever else you take will serve you. May your positive effects be noticeable and numerous and your less desirable effects be subtle and few. Thanks for all the work you do and blessings on your journey.
I love so much that comment!
Nel, thank you so much for all you wrote. I think it’s common to want a magic bullet – one solution that does all – but life and health is more complicated than that, as you so eloquently wrote. Here’s to using all of the tools at our disposal.
Eileen, you have been a lifesaver for me, really your podcast and blog are my support group. I have RA and Hashimoto’s and I have been doing extremely well on the AIP and am so grateful to you because I stay motivated through your work. Also, I want to let you know that I was at the same stage of life hormonally about 2 years ago and also went off the pill at the recommendation of my functional med internist and the hormone shift caused me to get frozen shoulder and then the other shoulder froze as well. I could barely move my arms and the pain was so intense I could not plug in a plug or tie my shoe, let alone put a ticket into a parking garage kiosk. I did ten months of physical therapy and got completely better. For what it is worth, I feel the frozen shoulders were related to perimenopause and not my RA because my other symptoms ebbed and flowed in the usual way. My orthopedic and Chinese medicine docs also thought it was a separate issue.
(My RA symptoms during the past two years were reduced to some pain in my wrists – can’t do downward facing dog – sore feet and swellings behind my knees, but I rode a bike on a 25 mile ride last month. Still get occasional flares and related fatigue that can affect knees and hands if I travel or don’t get enough sleep)
My rheumatologist told me to start methotrexate a year ago December (another one had previously prescribed biologics) but I am still doing very well without it. If that changes, I will be grateful to you again for showing me the way.
Wish I could give you a big hug in person.
Teresa, I’m so glad you’re doing well! For me, the x-rays show damage to my left shoulder and there is active joint swelling, so it is RA in my case, but I’m glad it wasn’t in yours! May you continue to feel better and better! And thanks for the hug; sending one to you as well.
The kindness you showed me two years ago when I was new to the AIP eating plan will never be forgotten. Thank you for the recipes, information, love and support which you so generously share with us all. My thoughts, prayers, and best wishes will always be with you.
Thank you so much, Christine!
Phoenixhelix, have you or anyone with RA or other autoimmune diseases done or thought of doing a stool transplant? Do you have any success stories on that?
Adrienne, I did a podcast on Fecal Microbiota Transplants. It’s fascinating and worth a listen. When it comes to autoimmune disease it can “clear the static” – meaning that it can often correct gut dysbiosis that might be exacerbating autoimmune symptoms – but it doesn’t cure autoimmune disease. The FMT expert said it can make other interventions (like medication) more effective. I did interview a man with MS who found it improved his symptoms by 80%. So, if someone isn’t seeing improvement through other means, it’s a possible treatment option if you’re able to travel to a country where it’s legal (such as England or Australia).
We live in a very unnatural world with so many unnatural triggers of immune-related disorders that it’s nearly impossible to escape them all, or to correct damage to our systems that has already occurred, that many of us need “unnatural” prescription medicines to help us on our way. There is no contradiction in that. Thanks for a great post!
Excellent point, Ann.
I am so sorry that this is necessary for you, and also grateful that it is an option for you. I will keep you in my prayers. May the medication be successful in allowing you a full remission of your symptoms.
Thanks, Marianne!
Eileen, thank you so much for such a wonderful and honest post. You are such an inspiration to me and to so many, and I have passed along the AIP to many who are suffering who hadn’t ever heard of it, and are now benefitting greatly. I can never thank you enough for all you have done. I am curious, do you have lyme disease? At 41, I have finally been diagnosed with lyme, and it turns out it explains many earlier things in my life from Hashimoto’s to fibromyalgia and on from there. Have you been tested or treated for lyme yourself? Sometimes, it is indeed the missing link. Best wishes to you, always.
Hi Erica. Lyme is not part of my personal puzzle. I’m straight-up RA. Now that you are diagnosed, is it leading to any improvements in your autoimmune conditions?
Eileen, thank you for this thoughtful, studied, intelligent post. I appreciate your sharing your journey. I consider you a model for assessing one’s health and taking action to obtain the highest quality of life possible. I wish you well on this leg of the journey and know you will achieve optimal health for you. Thanks again for sharing your amazing story and all the knowledge you share with us!
Katie, thanks for the beautiful comment and well wishes. With each comment I read, my heart overflows more and more.
Eileen, I feel your pain – literally. I was diagnosed as a child with RA 20 years ago. I’ve tried a lot of conventional and unconventional things to reduce the inflammation and halt the joint damage (and I have experienced a LOT of irreparable joint damage). In 2007, I started on a biologic, which helped drastically. For the first time, I could dance the night away without waking up to melon-sized knees! Even still, I continued to experience minor RA pain/symptoms and increased digestive issues. I found AIP about 2 years ago and the diet has alleviated my digestion issues and reduced those remaining RA issues. Together, AIP and a biologic have vastly improved my health. Thank you for sharing your journey, which is inspiring.
Megan, thank you so much for sharing your story. You are an inspiration as well. Here’s to dancing the night away!
I truly appreciate your openness about your decision. I am struggling with RA and your blog was the first resource I found outside of my doctor. I react poorly to medication and so I took it out of my healing equation due to fear of side effects. You have provided so many great ideas that have helped me reduce symptoms and great my life back, but with new symptoms and a declining mental state, it seems this post was perfect timing to remind me that sometimes diet and medication can be the right option.
Hi Elise. I’m glad this was the right post at the right time for you. Wishing you wellness in every way!
I am sincerely hoping for positive results for you! I have been on this RA journey since I was a child. I am 38 and a living testament to everything you described in your article. There is no perfect combination or solution for RA. A lot of rheumys would like to treat it that way but it is highly personalized and individualized. I’m very happy for you that you found a rheumatologist that understands that. Yes, visualization and positive thoughts are very helpful! I wish you the best and send hope for healing!
Jill, thank you so much for your comment which carries the wisdom of a lifetime of RA. May both of our futures be filled with wellbeing and joy.
Eileen,
I can only imagine how hard this part has been for you but applaud the acceptance and honesty of your post. You have been (and continue to be) a champion for many of us. Not just for diet and lifestyle but in sharing your journey with us in such an accepting way. I had a very similar “rock” bottom as you did. I woke up one day and just couldn’t move right. I couldn’t raise my arms or close my hands and was achy all over, limping and hurting and confused. My husband had to take the comforter off of me in the morning because it was too heavy for me to lift. I felt every single bone and joint in my body and dreaded going to sleep because I knew I would wake up practically paralyzed (felt like how I would imagine Rigor mortis feels) and then it would take 2-3 hours to feel like I could do anything out of my room. I would go down the stairs backwards because my left hand couldn’t grasp the railing as well as my right (and it took about 5 minutes to go up or down). It was terrible and so scary. We made some diet changes but I did start medication right away. It is such a personal choice. As you said, you had to make sure you had tried diet and exercise before you came to peace with possible medication. Everyone has their own timeline and journey. There isn’t one choice that “wins” for everyone or is the best; they are just different choices. Your knowledge that you have shared and your research has changed lives and helped so many people who were scared and felt hopeless. You gave them the power of knowledge to make their own choice beyond what many doctors give them. Thank you for that. My rheumatologist told me it didn’t hurt to try to help symptoms through diet but that it usually wasn’t enough to control joint damage; that was that. Even with my interest, he didn’t offer a referral to a nutritionist or offer any options on what might work. I know many rheumatologists/doctors are the same. My family and I are all decent researchers though so we could find much of what we needed online, thanks to people like you who took the time not just to learn what helped themselves but to share it with others. Now when someone is newly diagnosed, they have something more to go on than a pamphlet a doctor gives out.
I can only imagine that you will take this next step with the same passion, knowledge and vigor that you have with your lifestyle changes. I hope that you find the combination that works for you, for this time in your life. It may not be what you needed 4 years ago or the exact thing that works in a year or two but I can tell you have analyzed and carefully considered all the options and are making the right choice for you, for this moment. That is very brave. Faced with disease, we all at some point accept that our options are different than they were before diagnosis and that we have to stay in front of what these crazy diseases do to our body. Everyone’s body is different and even our own body and responses are different as the disease figures us out. Currently I take 15 mg MTX and Enbrel each week. I have little to no side effects with Enbrel but MTX still varies each week, even after a year and a half. some weeks, its like nothing and other weeks, I am down for a day or so (malaise, sometimes pain, just bleh-no major stomach issues so still on pills). Lots of water helps but not always. They are tricky little pills. But we tried to eliminate MTX once the Enbrel was working well and I had a huge relapse. While it keeps me down once a week, its better than losing 2 months to a relapse. It’s helping. I’m hopeful that someday, I will be able to be medication free but just take it day by day. It’s what we do. Our best each day for that day.
Again, thanks again for all you have done. You are an inspiration.
Kari, thank you so much for sharing your story. I remember when my comforter was too heavy to lift as well! RA pain is so intense. Thanks also for sharing your medication experiences. It’s a trial and error process to discover what works, and you’re ahead of me on that path. I’m so glad you’ve found a medication combination that works best for you.
Hi Eileen,
Thanks for your interessting post right. I like it.
I just found something very interessting for you.
Maybe you should have a look ot this:
http://www.ncbi.nlm.nih.gov/pubmed/20451574
Lot’s of love,
Josef
Interesting! Thanks, Josef.
I have RA diagnosed a year ago. Didn’t take any drugs research , found and followed the Paddison program for RA plant based diet .. hard work , it is not easy road to go! But I prepare my meals from scratch and not eating any package food even if is organic…I made my own probiotics and also take supplements..after 6 months my RA went to remission. I started to see a Narutopath who diagnosed me with hashimotos.. All this time I felt great exercising every day, meditating etc.. My naturopath suggested me the AIP wich I followed for a month…as a result of this my inflammatory markers went up .. From having cro of 0.4 to 4 and seed rate from 11 to20.. Definitely meat is not good for me .. And it takes time to digest.. People with AI disease need to keep a fast digestion/flow .. We cannot keep waste in our digestive tract .. We cannot be constipated .. This caused me joint pain.. I returned to my plant based diet and I started to feel good again, my markers went down .. I’m blood type o+ I supposed to be a meat eater.. But clearly is not good for me. Also you should consider to only juice vegetales for 30 days to reset your immune system. I strongly believe that “something” is triggering our bodies to attack itself .. I used to get migraines, cold sores in my moths, throat infections, used to feel sick and tired every day.. Since I changed my diet I am not sick anymore.. Even though I have the antibodies I feel better than ever! Just wanted to share my story. I wish you the best.. God bless you always.. Don’t give up.. Everything is possible in life if we put our minds on it and believe!!!! I love your podcasts .. You are a good caring soul..
Peace and wellness Eileen!
Hi Roxana. I’m glad you found a diet that is working well for you. I had the exact opposite experience – a plantbased diet caused my inflammation to spike dramatically. I don’t do well with grains or legumes. Rather, the paleo diet is the one that reduced my inflammation dramatically. We are all unique! I hope you continue to feel well long-term. My one piece of advice for you is to be careful about nutrient-deficiencies that often result from following a vegetarian diet longterm. Wishing you peace and wellness also.
I’m not trying to “fix” you, so please don’t take it that way. Have you read about Dr. Brownstein ( and Abraham and Flechas) and the Iodine Protocol? If you haven’t please consider reading their work!
Also, doing some things to help the lymphatic system can help. Fruitarians discuss this a lot and there are many herbal supplements that can help with this!
Hi JBR. I know your suggestion comes from a caring place. The interesting thing about iodine is that it helps some people and hurts others. It’s definitely a controversial treatment. For me, it’s neutral – it doesn’t impact my symptoms one way or the other. I will say that while I think nutrient deficiencies can sometimes be complicating factors in autoimmune health, I don’t thing they’re ever the sole cause or cure. But they can definitely be part of the picture. As for lymphatic work, I’m a huge believer. I’m lucky because I’m a certified lymph drainage therapist, so this is a technique I practice on myself regularly. It’s definitely an important part of my health protocol but doesn’t seem to affect disease progression. That said, its detox benefit will help me minimize any potential side effects from medications. Wishing us all wellness.
Eileen, your journey is yours, and you are generous to share it with us all. Your detailed explanation about why you’re making the decisions you’re making encourages us to consider all options when managing our own health. I appreciate your perspective and insight.
I know that what worked for me prior to diagnosis wasn’t enough to work for me after diagnosis, and what works today may not work in a few years. We do the best we can and make the best decisions we can given our circumstances and information at the time.
Life isn’t pass/fail, and we get to decide for ourselves how well we live. Keep being you and enjoy it, Eileen! I wish the best for you!
Thank you so much for sharing your wisdom, Stacie. I love when you said: “Life isn’t pass/fail, and we get to decide for ourselves how well we live.” Indeed!
Hi Eileen, I was moved by this piece and so appreciate you sharing your journey. I love how you are so brave, honest and thoughtful, and thorough. I follow you closely and absolutely love your podcasts. You have a gift and are wonderful with your both your spoken and written word. I connect with you on many levels. I was diagnosed with Lupus 18 months ago, trialing the AIP, addressing the additional issues found though functional medicine testing. Overall i am progressing well. The background noise from family and Dr’s about my need to go on medication is a constant. I live in Australia and from here will continue to follow your journey, love all you give out to the AI community, and send you my very best wishes for this next road along your unique, winding, ever so special pathway. Julie
Julie, thank you so much for your kind words. That’s wonderful that you are progressing well in your lupus healing. May you continue to feel better and better!
Eileen, You are amazing and brave to share all of this! “Sophie’s Choice” is exactly right. None of us want to take the medications, but sometimes it is what our body needs. Without methotrexate, plaquenil, enbrel, and occasionally, prednisone, I do not function well enough to work on lifestyle and diet. AIP has not been a cure all, but it has allowed me to reduce medication dosages and has taught me so much about my body, some of it’s triggers, and how to respect where my body is at from day to day. Reading this reminds me that there is still work I can do to help me be at peace with where I am on my autoimmune journey. I am forever grateful to have found your site as it led me to the AIP lifestyle. I am hopeful that you will find a combination that works well for you and your body. Send many positive thoughts in your direction.
Thank you so much for sharing your experience, Christine. You are right – it’s so empowering to learn our bodies’ language and its needs – both when it comes to diet and medication. I’m glad you’re doing well!
Wonderful post Eileen, you are an inspiration. You emailed me sometime ago offering words of encouragement when one of my daughters was experiencing some flares. You made me feel better as I was worried about her. She is doing well now and is doing this with diet alone. You have helped so many people and I know the whole community wishes you well. This is just hiccup in your healing journey. Thank you Eileen
Thank you, Lyn. I’m so glad I was able to encourage you at that time, and it’s beautiful to hear that she’s doing so well. Wishing you both continued health and happiness.
Lovely Eileen – your ability to articulate in such a thoughtful, honest and open way is one of the reasons we keep coming back to Phoenix Helix. But it is the way you care so much for others that makes us feel connected to you. Sending you GIANT hugs from down here.
I know that this was a huge decision for you to make. If love and the power of thought can effect change (and I believe it can), then you must have an awfully powerful foundation, my friend. Lots of love.
Thanks for the hugs and your kind words. I appreciate it, Joanna!
Thanks for your honest sharing about your RA path. I was diagnosed three years ago at age 46. I told my doctor that I wanted to try diet before going on mtx. If I didn’t feel any better by my next appointment- 3 months- then I would take the medication. I felt better after eliminating a lot of foods similar to AIP but I still had some pain and stiffness and my blood work was no better actually RH factor was worse. So I started the medicine and after a few months felt significantly better. But after a couple of years, I decided I wanted to take a break from medicine and only use food as medicine. I felt great for 4 months and then flared. It was so bad that I immediately started taking the mtx again and still am 4 months later. Around that time I remember unsubscribing to most of the AIP sites I was reading but would check on them every now and then to look at healthy recipe ideas. When I checked your site this morning and saw the picture of a hand filled with the RA meds I decided to read on. So glad I did, it was such a humble account of your journey so far. I have subscribed again and plan to keep reading. Thanks so much for sharing.
I’m so glad you visited my blog on this day, Pat. Thank you for sharing your experience.
I want to wish you all the best, Eileen! Thanks so much for this post. You have helped me enormously with your leadership, intelligence, and kindness. My autoimmune condition is that my immune system attacks my liver (AIH). I have achieved a wonderful level of wellness through following the AIP, but a low level of medication is also part of the equation that is right for me, for now. You are such a special person and I wish you many blessings of good health and happiness.
Thanks so much for sharing your experience, Mary, along with your very kind words.
good decision. all the best to you. You are indeed smart, intelligent, BRAVE , honest , wonderful lady. I really hope you will get better soon. sending my love and prayers!!
Thank you so much, Joanna.
No two bodies are alike, even two bodies with the same diagnosis. We all have to listen to our inner wisdom, which knows what is best for our own body. Don’t feel the need to apologize for doing what your body needs now. And since our bodies are constantly changing, we must constantly listen to them for changing guidance.
Best of luck to you on your journey toward complete wellness.
Thank you, Susan. This is so true.
Eileen,
You are the most honest, brave & open woman ever. Thank-you for that. I’m sorry you are suffering and I understand your need to make choices for your life…however I’m going to throw this tidbit out there.. most docs will poo poo it but balancing sex hormones can make a world of difference in your health. At your age progesterone is plummeting which causes estrogen dominance. When it happened to me I got fibroids, docs wouldn’t treat but insisted on surgery, then hashi’s got triggered I don’t have to tell you what hell that has been, then cancer more hell & poisonous treatment! If they just would have given me progesterone to balance the estrogen likely none of this would have happened or it wouldn’t have been so severe. Post cancer, no one wants to give me progesterone because it doesn’t jive with the medical model which apparently is survive cancer but have NO quality of life. Do what you HAVE to do for you beautiful lady, this life is the only one we get. 🙂
Apelila, thank you for sharing your experience. I’m definitely taking my hormone imbalances seriously and addressing those simultaneously.
Dear Eileen, you are so inspiring, well done for finding the strength and courage to try an alternative to what has so far worked so well for you. As you rightly say, be thankful that you can try to walk this path, which does not condemn AIP, that and medication can be powerful individually or combined. I treat my autoimmune condition, MS, without drugs, but breast cancer with drugs and alternative medicine/AIP. We are fortunate we live in an age we have these choices. And we are fortunate that we are strong and informed enough to make the choices we make. All the very best and thank you for sharing this with us. Best, Francesca
Thank you so much for sharing your experience, Francesca. You are right – we are so fortunate in both the ways you describe.
Eileen, I am humbled and inspired by your extraordinary post. Truth is a rare commodity, so I applaud your strength and courage in being so ‘real.’ I have always relied on your blog for support and encouragement and that has not changed. You amaze me. Do not think for one minute that you have let others down – you have inspired us to face reality and keep on keeping on with love and acceptance.
I too have been struggling with RA and have always felt somewhat guilty for taking traditional medication. In fact, although I find AIP challenging I have been compliant 95% of the time for the past 6 months. To my dismay, although I believe AIP has helped my digestion and regulates my blood sugar, my need for medication has only increased. I have gone from prednisone alone to adding sulfasalazine and most recently methotextrate. I am still struggling, and I see biologics looming in the distance. Thank you for helping me to see this is not failure (if only I drank more bone broth, if only I could embrace coconut) but the path I am on.
In wish you the best of all outcomes with your new medication and am rooting for you from the bottom of my heart.
Jean, thank you so much for such a beautiful comment. I’m rooting for you, too!
Dear Ellen,
It’s amazing how much my journey has followed yours, and I am very thankful I found you. I began Paleo in 2012 and shortly thereafter was diagnosed with RA. I was battling debilitating epilepsy at the time due to what I knew had been a failed coiled cerebral aneurysm years prior. I’d learned that I fell into that small percentage of population who have high sensitivities to medications, and thus all the side effects. I began following Dr. Sarah Ballantyne right away and went AIP, as well as Dr. Terry Wahls here in Iowa where I live. My first visit to a rheumatologist was all about medications and I spoke all about diet and we weren’t seeing eye-to-eye. Then I had my first huge flare so I tried plaquinil and wish I hadn’t because I became so sick. Long story short, no meds and last year I was discharged from the clinic due to total remission. I also had the aneurysm recoiled last year, and damage repaired from the first, and epilepsy is gone after 11 awful years. I began seeing a functional medicine doctor as I was having chronic fatigue – I have the MTHR gene as well. I was diagnosed with Hashimoto’s December 2015 – 3 years after my RA, and pernicious anemia as well. The anemia is under control with b12, thyroid is finally at good levels with Naturethroid, but I’ve become sicker and my antibodies have gone through the roof. My functional medicine doctor has referred me to Endocrinology at the University of Iowa and I’m waiting for my appointment next month. I know, like you, I will face the fact of medication. It was so brave of you to not only have to make this decision for your best health, but to share it with all of us who have followed you since the beginning. I hope you continue to share your progress down this path for many will be following as always.
Kim, you have been through so much and achieved so much! I’m so happy for you that the epilepsy is gone and that you have managed your other autoimmune conditions so well. If you do need medication in your future, my wish for you is that you find one that benefits your body without side effects. Wishing you healing in every way.
You mentioned that functional medicine and diet failed to treat your leaky gut. My husband and I had experienced that same thing until I talked to Dr. Ruscio about SIBO and removing the bacterial biofilm in order to treat. His book is coming out early next year and, if you haven’t looked at this, I’d really encourage you to get it or reach out to him. We’ve been experimenting with supplements that are designed to remove the biofilm and the bacteria and what I’ve seen so far has made me very hopeful.
Best of luck and best wishes!
Hi Becky. I’m guessing you and your husband don’t have autoimmune disease? How autoimmune disease and leaky gut are interconnected is that if you have an active autoimmune disease, it will attack the gut in addition to the part of your body associated with your diagnosis. For this reason, unless you’re in complete remission, you automatically have leaky gut. The good news is that every step we take to reduce autoimmune symptoms (including a healthy diet and lifestyle and clearing infections and biofilms) will help us minimize leaky gut symptoms as well. What benefits one benefits the other. So, our efforts are definitely worthwhile. But it can’t be “cured.”
Thank you so much for posting this. I have RA (since 2007/08) and found AIP in October 2014. Originally it helped quite fast and efficiently, while I was still on Humira and plaquenil, since then a lot has changed and I was hit with a huge flare in Summer 2015 that lasted until today. at that point I was off meds and only on AIP and a bunch of supplements from my functional doc, but it got so bad I couldn’t function anymore, so I “caved” and started Cortisone again, then Methotrexate (in pill form for the first time, before I used to get shots). Unfortunately that did nothing for me, and I still needed anti-inflammatory drugs on occasion, so we started mtx as shots again in February, and then in May simponi, a different biologica. I felt like I should have been able to prevent that, that it was my fault, that I should have chosen not to travel in oder to be able to stick to AIP (which was impossible for me traveling to asia), that I should have made more of an effort to go to bed earlier strictly, to do this and that and all the other things that can help.
The meds help, I’m still on strict AIP, but it’s starting to get a bit worse again, and I’ll have to rediscuss with my functional doc and my rheumatologist.
Anyway, I just wanted to thank you for this post. It makes me feel less guilty, and more ok.
Sabrina, we can be so hard on ourselves. The flip side of feeling empowered to improve our health, we sometimes take too much responsibility when we can’t “fix” it all. I hope you soon find the blend of of diet, medication and functional medicine that helps you return to full and pain-free life. Gentle hugs coming your way.
thank you for your kind words <3 I wish the same to you. You are an inspiration.
Hi Eileen,
Thank You again as always for your lovely honesty and inspiration. You are an amazing light in this community. You have to do what you have to do to manage pain. It is ironic though, I have been meaning to message you about Boron and I see a couple of people have already mentioned it. http://www.health-science-spirit.com/borax.htm
I started doing this in addition to AIP and some other healing protocols as I felt like my joints were starting to flare a little again and I had read this years ago and thought now was the time to try it out. I’ve been using the Boron for about 6 weeks now and am up to 2 teaspoons of solution a day and I would say I am experiencing a reduction in pain. No side effects so I’ll power on with it. Not sure if it will help you but I know you love to research and its a very interesting research bubble to go into.
Blessings to you and I hope your hormones settle fast. They certainly don’t help trying to figure out the right path when they can have such wild swings day to day.
Thank you and may your shoulder heal fast and your side effects be non-existent.
Hi Tanya. I’m glad you’ve found something that appears to be helping. My problem isn’t pain – it’s active joint damage. That’s why it’s time for me to try medication. I appreciate your thinking of me. Blessings to you as well.
Eileen, I have experienced so much positive in my life despite having gone through hell because of RA. I discovered Louis Hay, Byron Katie and Eileen Baird, among many other beautiful and inspirational people. I feel for you. I am so sorry for the pain you have experienced and that it has returned to your body after achieving such success through the AIP. I can relate to your journey in so many ways and am truly grateful for your inspiration, your persistence in research and your willingness to share it with others. I refused to take medication for a long time and out of desperation and limited success through diet and other alternative methods, resorted to taking medication. To make a long story short, I have quit taking many dangerous medications and am 95% better on humira alone. I had to learn to trust in a different path. I hope you find relief, comfort and success on your new path.
Brian, thank you so much for sharing your experience. I think there’s great wisdom in your statement: “I had to learn to trust in a different path.” Thank you.
Eileen, I have been dealing with uveitis for 4 years and have recently been struggling with one of my worst flares. My doctors have now started methotrexate with me in hopes it will get my inflammation under control. I’ve experimented with using food and supplements to help my body heal in the past but have alway had a tough time sticking with it. Recently I started again with this process and have been reading, researching, and experimenting with different things and I came across your website and signed up for your emails. I wanted to say thank you for this post. For your honesty and your courage. It’s helped me feel less alone and hopeful that this journey that I’m on will lead me to find healing and peace with my body. I wish you the best of luck as you take these next steps and am sending lots of love.
Angela, thank you so much for writing. One of my hopes for this post is that it would do exactly this – help people feel less alone. Sending you good luck and lots of love as well.
This was such a touching post. I’m blessed, inspired and informed by the work that you’re doing and by watching your journey to healing, acceptance and self-love. Keep up the great work both here and on the podcast. I’ll be praying for your success with the methotrexate.
Thank you for your beautiful comment, Joanna.
…. Look into Bee Venom Therapy. Many healing powers.
Hi Myra. It’s a fascinating idea. While research is limited, the one clinical trial with humans showed that it works best in combination with medication, however.
May God Bless and keep you. Thank you for your help on this blog and you have been an inspiration for me on my journey with The AIP having a severe case of Psoriasis ( hopefully nothing else…). My inflammation is almost gone, and although I still have issues, it is better since I started the AIP. It’s your blog I stumbled on first and I will pray for you.
Thanks, Adrienne! I’m so glad you’re doing so well with your psoriasis. The AIP is truly powerful medicine.
Your audience noticed the emotional content of this post and has replied accordingly.
I was not going to comment, given that I might not be able to say anything new or different, but decided otherwise. If only just to wish you the best of luck, thank you again for being the kind source of comfort for many AIPers and reiterate my support. Even if it is just virtual.
Send you a big hug. May you achieve your goal and happiness
Thanks, Ivonne. The outpouring of love and support has meant so much to me. I feel wrapped in a thousand hugs and am truly grateful.
Eileen, what a beautiful and well written post. Thank you so much for being so honest about where you are at. I am always looking at ways to heal with food but also as a retired pharmacist I know that food alone is not necessarily or always the answer. Medication can and should be the choice in some cases so thank you for openly talking about your struggle. Am sending you healing energy!
Thanks for sharing your professional and personal experience, Margaret. I’ll accept that healing energy with gratitude!
Thanks so much for sharing your experience, Kir. Medication + diet can be a powerful combination.
I truly appreciate the tone of your blog that everything is an experiment. If we enter with curiosity it all has the possibility of healing. Thanks for the compassionate encouragement that everyone’s journey is different and this may need to include medication. For me, the prospect of permanent damage to my body makes every decision high stakes, and if medication has a chance of helping, the option deserves to be on the table.
Also wanted to share my methotrexate experience. I’ve took it as pills for about 10 months. Surprisingly, the side effects got measurably better after 6-8 months, which seemed like a really long time. But I wasn’t quite getting full symptom relief. For the last 6 months I’ve been taking injected methotrexate very successfully. I resisted because who wants to poke themselves once a week??? But the injections are so much better for me! They barely hurt, more medicine effectively gets in your system for the same dose, and my GI side effects are totally gone. Finally got an acceptable amount of improvement, and I can live life with less fatigue and nausea.
Hoping you are lucky with the right combo of medicines. Thanks again for sharing it with us.
“If we enter with curiosity it all has the possibility of healing.” I love that, Kat! Thanks also for sharing your experience with the 2 forms of methotrexate. I’ve heard this from a number of people now. I’m so new to this, my doctor also started me with the pills, but she mentioned the injectable is a consideration if I don’t do well on the pills. Experiment #1. We’ll see. 🙂
A surprising but timely post. I’ve been trying to stay off my biologic after 17 years. Four months later I am disappointed – with 1 very swollen finger joint, sore toe joints, etc. I started considering going back on the biologic, but felt I was failing at everything else I was doing (AIP for 2+ years, low stress, good sleep, digestive aids, probiotics, etc.). Finally got off prednisone after taking 19 years. Your honesty is now forcing me to be honest with my body & will help me to make good decisions for my health – without feeling like a failure. Thank you for your continued encouragement! God bless you!!
Denise, it looks like we are on synchronous journeys. You are definitely not a failure. Sometimes, we just need some outside help. Gentle hugs coming your way.
I just want to say that you are NOT letting anyone down. We each have to make the choice(s) that we feel are right for us, at each time throughout our healing.
I also wonder if you have heard about borax for RA? (I cannot post a link, as I am on my phone – if I try to get the link, my post disappears!) An Aussie Dr. Reversed his own & many other’s RA through adding borax to his (& his patient’s) diet(s). I am not saying that this has/will work for every one but I thought that I would mention it, if you haven’t heard about it before & would like to look in to it, there is quite a bit of info; on the net.
I had a huge flare a couple of weeks ago – pain in every single joint of my body, which woke me up (like hot knives/electricity. Hard to explain) on top of other autoimmunities. I have finally decided enough is enough & have asked for certain tests to be run (after years of going through Dr’s who won’t listen, have finally found one who is listening & has run a few of those tests. When they came back I was told “It’s not in your head. There is something wrong with you”. Finally!!). I am being sent to a Rheumatologist in Sept – earliest time that I can get in.
We have each taken our healing in to our own hands (which can be scary/daunting/overwhelming at times but, we also have to know when we have reached our own limitations (&, for some, their FMP’s limitations).
Once all is said & done, we all need to deal with our own decisions. We also know that too much inflammation causes too much stress on the body which causes early death – just like medications.
Thank you for sharing your story with us. We are all human & your post shows that you are just like the rest of us who are struggling, every day. Thank you for sharing your humanness
Good luck with the meds. I truly hope that you can find relief. We are all in this healing journey, together.
What a beautiful comment, George. Thank you so much. I hope you find helpful answers with the rheumatologist and relief of your pain. You are right that causes a huge amount of stress. What I love about this community is the understanding we have for each other’s experiences. Wishing you wellness in every way!
Thanks Eileen – great post. I take medication and follow Paleo with good results. If I go off my medication or off Paleo I crash. Everyone is unique so you have to do what is best for you.
Liz, I’m so glad to hear paleo + medication works so well for you. I hope the same for me.
Eileen: as many times as I have read and benefited immensely from the information and insight you provide in your posts online, I’ve never written to thank you. I’d like to amend that now: thank you for the endless research you’ve conducted, for the recipes you’ve shared, for the pieces you’ve written, for the constant encouragement of others by providing real resources for the AIP way of life, but most of all now, for your courage and honesty in sharing this newest part of your journey to manage pain and stay sane. I found AIP online after many years of living with the long effects of not well-managed Hashimoto’s disease and the beginnings of RA pain. Your blog was among the first resources I found, and I was and am impressed with the kindness of the writer. “Doing” AIP about 80% of the time has immensely helped my RA symptoms, but I don’t think the Hashimoto’s has changed all that much, and brain fog still reigns. However, though I believe you have advocated for fuller AIP compliance than I’ve been able to manage, I have only felt encouraged, even in my anonymity. Bless you, thank you, and continue to keep us posted!
Mary, what a beautiful comment. You brought tears to my eyes. Thank you! Wishing you wellness in every way.
Thank you for that incredible post; hugs from me, too. I have been on methotrexate for 2 years, since my initial diagnosis. I started Whole30 in October 2015 and slid into AIP from there. I have reduced my dose from 18 mg/week to 12. If I can’t get full remission, I’d like to help my liver out as much as I can. I think that I’ve read that it takes 12 weeks to get to the full effect; if that’s true, you may need to extend your time window. As fearful as I am about methotrexate, the other side of the story is my 86-year-old aunt-by-marriage who has had RA since her 20’s and has been on methotrexate since it came out. She calls it her life-saver. . . Best wishes on your journey.
Cecilia, thank you so much for sharing your story and your aunt’s story! I love this wisdom: “If I can’t get full remission, I’d like to help my liver out as much as I can.” I’ll keep that in mind for the future of possibilities also. You’re right about the medication timeline – It might be a very long time before I really know the results of my medication trial. I’ll just take it one week at a time.
Eileen, I think you are an amazingly intelligent and brave woman! You’ve done your research, you’ve tried AIP on its own and you have improved your health mightily. Now your body is asking you for more help and you have decided on a course of medication.
It takes a lot of courage, I think, to publicly declare your intentions and to share your story as honestly as you have. I don’t think I could do the same.
So thank you for all of your honesty, your courage and commitment..not to mention great recipes, advice and resources! Not that you need it but know you have my unwavering support!
Sue, your comment brought tears to my eyes. Thank you so much!
Thank you for sharing so eloquently with us, your tribe. I’ve had severe plaque psoriasis for 5 years. Working with my holistic pro-Paleo M.D., I’ve made a huge turnaround which came after 4 years AIP and being relieved of the stress of caring for my godmother who had Alzheimer’s. After having lesions all over my body, going from 120 pounds to 99 in 2 years, losing hair, having brain fog, and being exhausted, I’m back. However, I’ve not been able to clear my lower legs. In frustration and anger, I turned to a rheumatologist. Last December I began taking a half dose of Otezla, beating myself up even tho I know better, feeling like a failure because I’ve only been 95% compliant with AIP. Now, thanks to you and all the other dear souls who shared, I’m going to just get over myself and reclaim gratitude–for what is supposed to be the safest med in the arsenal for psoriasis and for the 90% clearing. Bless you all!
Vicki, thank you so much for sharing your story. I love that final sentiment. May we all get over ourselves and reclaim gratitude, and help each other do the same. Sending much love your way.
It’s always easy for people to criticize. What isn’t easy is waking each morning wonder which limb won’t work today. I have Lupus and I take Plaquenil. The discussions have now started about the Methotrexate. I also GREATLY APPRECIATE a steroid shot once in a while. The relief is AMAZING. It’s so wonderful while it lasts to feel alive again. All this to say, YOU have to live in your body. You take the very best care of it that you can. This doesn’t change because you may need medical intervention. You do what’s right for you. Anything to the contrary is something I’ve gotten great at scrolling past. God bless and I hope you find relief.
Thanks for sharing the wisdom of experience, Carolisa! Wishing you pain relief and a full life, as well.
Thanks Eileen for having the courage and vulnerability to write this post. I think so many people get caught up in being anti-medication and anti-antibiotics, etc, but it’s not like you fail when you have to go on these things. I believe food and lifestyle changes should be considered first over medication, but when those don’t work or work fully, then medication should be used. Unfortunately the system is rigged to be the opposite way (or really, just using medication, not even making food and lifestyle changes). So since everyone is different, comes from different backgrounds, been exposed to different things, has different issues, there is no one size fits all solution for everyone. And yours just happened to take a different path than some others. I wish you the best of luck with the meds and hope they offer the relief you are seeking! And thanks again for sharing this story with us. I think it’s quite valuable for everyone to see and to know it’s OK to have to take medications if necessary.
Thanks so much, Michele. You are so right. A friend of mind said recently, “To refuse to consider medication that can be helpful is just as closeminded as people who say that diet doesn’t matter.” It doesn’t have to be an either/or question. My hope is that medicine will evolve to include all three options, with doctors educated about each.
Thank you for your courage in continuing share your journey with such honesty. I have greatly benefitted and send my love and gratitude to you for being an advocate for us all through your story. May your choices continue to support you in mind, body and spirit.
Blessings to you every way Eileen.
Cindy
What beautiful blessings. Thank you, Cindy.
Eileen, hugs and best wishes for speedy improvements.
I was diagnosed with RA15 yrs ago and managed to delay starting on meds all those years. When joint damage started showing on my x rays I had to do something. My choice was to go on Minocycline, and it has worked wonders for me. I am now down to 3 days per week and my markers of inflammation and antibodies are way down and I feel fabulous! Dr Cowan suggested it for me a few years ago and I finally got the courage to start on it 6 months ago. I encourage you to look into this as a possible alternative to MTX.
Hi Pat. Thanks for sharing your experience. For those of you who want more information, this is a low-dose antibiotic protocol. You can learn more through The Road Back Foundation.
I am so grateful for you, Eileen. I will include you in my prayers. Thank you for your brilliant blog and podcast. They are essential reading/listening for me.
Thanks, Diane!
Is this article by Eileen??!! If so, thank you for this post. Thank you THANK YOU for posting this! I have hoshimotos since a kid, RA for 25 years and alopecia for 9. I take synthroid,, a biologic and very low dose of methotrexate. Thanks for being real. I have followed your blog, podcasts, books and have not heard of anyone with their autoimmune problems as long as I’ve had them make any comments about going into remission. Felt like giving up recently (been on AIP for 3 months). Hand and feet deformed and painful. Limited rom in wrists thumbs and toes. I can’t tell you how encouraging this post is- not because you are needing to take meds but just the idea that I’m stable, that no meds have been added that I’ve gotten off other meds while AIP, this is an AMAMZING THING TO BE THANKFUL FOR!! You inspire me as always. Thank you for being transparent. You’re the ballsiest chick I know. You’re a rock star!
Jane, yes this is Eileen. All the posts on this blog are by me. 🙂 I’m so glad this post was the right message for you at the right time. It’s such a powerful thing to let ourselves off the perfection hook and focus on where we can be grateful. I’m so glad you are stable! And I think you just gave me my favorite compliment ever: “You’re the ballsiest chick I know.” Right backatcha!
Thank you for sharing Eileen! I’m on Methotrexate but did AIP for 6 months before getting on the medicine. I had so much guilt and shame about taking the medicine but I am so grateful not only for the meds but also for AIP. I learned a lot about myself and what triggers the Lupus joint pain. Thank you so much for all your work, authenticity and genuine love for us! Giving you a HUGE virtual hug my friend!
I’ll take that hug, and I’m sending one back to you, Angela. Thanks so much for sharing your experience. It’s very encouraging to me.
Do not feel like you have let anyone down. I started Enbrel last year, adding it to the methotrexate I was already on. The difference between where I was on Paleo alone and where I am now is considerable. You do what you need to do to function.
My helpful hint (I hope!): folinic acid with B12 instead of folic acid as supplement to real food. MTX left me reeling from some of the worst depression I’ve ever endured until my husband discovered it. Grace and peace to you on your journey.
Hi Adrienne. Thanks so much for sharing your experience, and I’m so glad you are feeling better on the combination of paleo + medication. That is my hope, too. I’m avoiding folic acid, also. I’m currently taking methyfolate, which is bioavailable and so far is working well. It’s similar to folinic acid in that regard. My B12 levels are high, so I don’t think I need to supplement, but you remind me wisely that might change on medication, so I’ll continue to watch that in my bloodwork.
I am so sorry to learn of your setback with RA, and support you in your decision to take the medical route.
No doubt, you have already thought of this, but i think it is worth mentioning. What about HRT? Here is my N=1 testimony:
Estrogen and progesterone helped me so much whith the perimenopause roller coaster, at first with low-dose even-dose everyday birth control pills, then with lowest dose HRT for post-menopause. Both were far lower than the amounts endogenous lay generated by younger women, and evened out the fluctuations that caused migraines and other significant pain and other symptoms.
I know nothing about effects on autoimmune issues, but I do believe it helped with inflammation and pain. All these experiences occurred when I was on the SAD.
I wish you the best.
Jane, thank you so much for sharing your experience! Right now, I’m trying herbs to balance my hormones, but if they don’t work, I would definitely consider HRT. I’m so glad it worked so well for you.
I am 59 next month, genes say I am 6 times more likely to have RA, mthfr double homo you’d mutation! Looks bad on paper. Bio identical hormones for thyroid, estradiol, progesterone, testosterone and Pregnenalone all kept above menopause levels. Added LDN and daily exercise and Paleo AIP. No sign of joint damage, but leg swells after a food slip. Keeping supported here. Use every low side effect tool I can. Totally recovered from Fibromyalgia. Multi-modal.
Sorry- no RA diagnosis at this point.
Kitty, good for you for working so hard on prevention! It’s an empowered way to be.
I have outlined my progress in a blog if you would like to see. I started it when I was flaring and needed answers. It didn’t help that my endocrinologist decreased my thyroid hormone by 40%! It took 18 months to recover. Supplemental hormones kept me together. Also some detail here on RA/Risperdal/Prolactin. It’s part of my solution. Feeling Phenomenal these days. http://ldnautoimmunerecovery.blogspot.com
I so appreciate all you have done for us, Eileen. Hugs!
Eileen, Sending so much love to you on your own special journey. We all support you 100% !!! Thank you,thank you, thank you for sharing so honestly with us. You give so much and I hope you feel the love from all of us!!
Gale, I feel showered with love, and it is such a beautiful feeling. Thank you so much!
Eileen thanks for sharing your journey. We all need to be reminded that an AI condition is never cured just managed . It is ok to use all modalities to help manage our symptoms
Question – were you ever able to add certain foods back in you diet without incident?
Best to you
Hi Christine. Yes, I was definitely able to reintroduce some foods. You can read more about my reintroduction experiences here: http://www.phoenixhelix.com/2013/09/15/my-experience-with-the-paleo-autoimmune-protocol/
Dear Elaine: This is an incredibly brave and inspiring post. I have scleroderma, and I’ve been on AIP (95% of the time) for the past year and half, as I’ve resisted taking medicine. I have dropped my ANA level to half, but the underlying disease is still there. Thank you for such a valuable post – if and when I need to take medicine I will come back to it. You are so inspiring to me. Much aloha to you on your journey.
Mary, thank you so much for sharing your story. Wishing you continued wellness!
Beautifully written, Eileen. Prayers and strength and healing thoughts are coming your way.
Thanks so much, Diane!
Thank you so much for sharing your journey with us. You are a truly inspiring woman and I wholeheartedly wish that the medication works well for you. I’m lucky that AIP is keeping my PsA at bay for now, but I fully realize that my future may hold a similar decision to the one you’re currently faced with.
Sarah, I’m so glad the AIP is working for you. Thanks for sharing your story, and your kind words.
Eileen, do you have Lyme? Is that underneath this?
No, Erica. Lyme isn’t part of my equation.
Eileen,
Your bravery in the face of fear and the unknown speaks to the individual and varied course we all are forced to choose. Your thoughtful sharing of your journey a gift to all of us. May you find peace in your journey. I feel confident your tribe will help carry you.
❤️
Thank you, Sharon. I’m so grateful for this tribe!
Thank you so much for sharing your journey. We are so fortunate to have you as a role model in this community and are all cheering you on and hoping you have a quick response to the medication with minimal or no side effects. You deserve to feel amazing!
Jaime, I’ll take those cheers! Thank you.
Thank you so much, Eileen, for your illuminating post. The individuality of each of our cases makes these decisions hard because outcomes are unpredictable. I wish you a very healthy outcome! In a way, maybe supplanting the Aleve with stronger drugs may be a good idea for a while, because Aleve does affect the gut, as I learned the hard way after taking big doses monthly for painful periods, at the end of which I developed Crohn’s. One thing I have wondered in the last year of eating AIP with about a 95% success rate in healing my Crohn’s is whether considering reintroductions successful while we are still 5% short of remission is a proper interpretation of successful reintroduction. That remains a niggling question for me.
Hi Sylvie. I don’t think remission is necessary for reintroduction success. Your body will let you know if a food is inflammatory; all you need is a baseline. Since some people never reach remission, their diets would stay unnecessarily restricted if they never went through the reintroduction process based on that fact alone. What I’ve seen in this community is that when there is an obstacle to healing after someone has addressed inflammatory foods through a healing diet like the AIP, the solution lies beyond food – whether that be lifestyle (like stress/sleep/etc.), functional medicine, or conventional medicine.
Eileen, you are such a beacon for those of us that need to always remain open-minded, flexible, optimistic, and honest. I respect you and your attitude so much.
Thank you for sharing.
What a beautiful compliment, Nina. Thank you so much.
My cousin once said to me when I was young that ” there are no right or wrong decisions, there is the one we make and proceed with it, we cannot predict how the other options will turn out”. Your knowledge and strength has carried me, and I am sure countless people, seeking ways to support their health. Thank you and wishing your wellness.
Astrid, what a wise cousin. It’s so true. We make the best choice we can at each crossroads, and then move forward with a hopeful heart.
Not to disparage your desiscion in anyway… Have you look into the Wahls protocol? I have been following it for 3 years for MS with great sucess.
Hi Michelle. This blog is actually dedicated to 3 healing diets: GAPS, Paleo & Wahls. I’ve interviewed Terry Wahls 3 times, and her focus on nutrient density is a big part of my approach. It provides me with optimal nourishment for my body to feel its best, but wasn’t enough to put me in remission. I’m very happy for you that the Wahls Protocol is working for you, though. It works for many people, Terry included!
Hi Eileen,
I have PA and have been on Methotrexate for 25 years, and had to add Humira (a biologic 6 years ago) as my disease became very aggressive. Then I found a functional MD 5 years ago (yay), in my city- I am sooo lucky. I was following an elimination diet template when I found the AutoImmune diet 4 years ago – must have found your sight soon thereafter and have been following you – thanks for all your hard work on our behalf!! If you want more info email me…I have some insights you may be interested in. Sending healing vibes your way!
xo
Cati
Thanks for sharing your story, Cati! I’ll take those healing vibes. 🙂
Good Morning Eileen
Ii was diagnosed with Adrenal fatigue in 2007 and life toward healing has been quite a journey. I had plateaued in 2014, we moved from CA to Prescott, AZ in 2015. In 2016 I was headed back down the rabbit hole. Then I found Dr. Robert Milisen NMD here in Prescott. He does not advertise, feeling that whomever comes through his door is meant to come. I started seeing him mid April and my body is making huge healing changes. I urge you to check him out at http://www.toxigone.com. His office is filled with folks with complicated cases that have found hope and healing following his protocols – it’s not easy, it’s time consuming but it works.
Hi Deb. I’m glad you found a doctor and a protocol that’s working for you. Wishing us all optimal health!
Eileen, you have been an inspiration to us all, thank your honesty, I would hope after taking care of yourself so much that you have put yourself in the best position possible to handle these drugs. Sending you positive energy across the water. Fair well good lady.
Thanks, Andrew. That is my hope as well.
Very thoughtful and wise. I contacted you when my disease first went active and the pain was unbearable and you were so helpful and supportive. I went on MtX8 and Prednisone immediately and for 1.5 years, regained my ability to function with in the 3 months. I was on Humira briefly but came off of everything after Humira/MtX8 reaction, have been on LDN only for past year, in addition to supplements and AIP. I found the MtX8 to be the most helpful but only after I started injecting it, which took it off my stomach. I will go back on that at any point my symptoms increase and are sustained. I was able to maintain at a lower dose with injections.
Maggie, I’m so glad I was helpful to you at a time when you needed it. You are an inspiration to me right now, because my mantra when I take my medication is “This will either help me or teach me.” Yours is such a great example of that. You’ve learned so much about what does and doesn’t work for your body. I love your confidence in knowing that you’re fine now, and also knowing what to choose in the future, should that need ever arise. Thanks for the tip on injections over pills for Mtx – I’ve heard that from others as well.
All the best to you as you try new therapies – you are a wise and thoughtful woman, and anyone who has read your blog will understand and support your decision. Hopefully it is a short term thing as you get through peri-/menopause. Prayers for successful management of your symptoms.B
Thanks, Barb. It would be wonderful if this is just a bump in the road, and one that will maybe lead me to greater healing overall.
I wish you all the best on your journey. Thanks so much for this insightful post.
Thanks, Carol!
Thank you for this post, Eileen. I’m keeping my fingers crossed for you for a successful medication plan!
Thanks, Jandra!
Thanks for this very honest post. I have to take immune suppressants or risk violent sudden attack but a rare AI disease and have often felt shame about it. I have been AIP for two years and agree that it helps enormously with many things. I pray that you are able to stay away from prednisone. I have had only one course in my life but my body has reacted as if I have been on it for twenty years – steroid sensitivity – as a result I need a double hip replacement from Avascular Necrosis, and all my teeth replaced as a result of bone loss in my jaw – both side effects of long term steroid use that have come to me after this one dose. I don’t want to scare you but never did I dream when those steroids were given to me that I would be dealing with such dramatic side effects only two years later. Proceed with caution where prednisone is concerned. Otherwise best of luck on your journey and thanks for all you do for this community.
Deedee, thank you so much for sharing your story. I’m so sorry you had that experience. I will keep it in mind.
Dearest Eileen –
You have given so much to the AIP community and we love you! Thank you for your honesty and transparency. In fact, it is such a breath of fresh air! I realize it can feel disappointing to go a medical route, but you have done so with such thought, research and care. You have not failed! You have been such a source of help and encouragement to those of us on this journey of health. I will pray that this will help you with the next leg of the your journey. Thank you for this post.
Lots of hugs-
Jen
Jen, I’ll take those hugs. Thank you for your beautiful words, also.
Thank you for sharing these honest thoughts with us. Love what you wrote about the mindbody connection. Louise Hay’s “Heal Your Body” helped me so much when I first began experiencing health issues.
Best of luck on this healing quest. You’ve got this!
Thank you again for all that you do for this community!
Thanks, Isabelle. I love Louise Hay, too!
Eileen,
You have been such an inspiration to me on my path towards healing my RA with the AIP approach. I want you to know that you will continue to be an inspiration with or without your personal use of prescription drugs. Thank you for your open heart and deep wisdom. I wish you much success with healing in this next phase of your journey. I have no doubt that you will move through it with grace and knowing.
Khandro, what a beautiful comment. Thank you!
Thanks for sharing your story. None of use are alike and treatment will mean different things for everyone. I appreciate your honesty and sharing your symptoms and treatment options as you go through this journey. May this be the cure you are searching for.
Thanks, Suzie. I don’t believe autoimmune disease can be cured, but remission would be nice!
I’m sure you did the best choice for your health, bonne chance à vous !
Thanks, Frederique!
Eileen, What a brave and vulnerable post. I can’t express what it meant to me. I have been struggling because my pain won’t just go away as it has done in the past after a flare. I have felt like a failure. I just talked last night with my husband about the big “what if.” What if I need the drugs??? I still don’t know and am hoping it will still go away. But your post has given me some courage and maybe will take the failure thing away from my thinking. Sending you love, hugs, and prayers for a good report with the methotrexate. Thank you so much for your honesty.
Kathy, I’m so sorry you’re still in pain. You are not a failure. This was my hope with this post – that my vulnerability would bring light rather than darkness to our community. Here’s a quote I love from Brene Brown: “When we find the courage to share our experiences and the compassion to hear others tell their stories, we force shame out of hiding.”
Hi Kathy
I’ve just read Eileen’s post and seen your reply. I’ve just had this exact conversation with mu husband, as I’m seeing my rheumatologist tomorrow and I think going back on medication (having tried them unsuccessfully in the past) is probably the next steps for me. I have tried many unsuccessfully but now that I am better thanks to AIP (I’d say 85% better, though currently going through a flare) and having more joint deformation, I need to up to ante! Thank you and Eileen and all the others here for sharing your stories!
Eileen, you are truly an inspiration in this community – thank you for sharing with us! You are using your knowledge to make the best informed decision for YOU, and that is most important. I can only imagine the strength it took to agree with medication and I’m glad that it was a decision you made vs being bullied into it by your doctors, as many in this community experience. I have a similar view on medication and really don’t like it – but it’s important to know when medication benefits outweigh the risk and sometimes medication is neccessary, which is what I heard from this post. I do think that the fact that you are AIP Paleo, it should hopefully mean your body handles and responds to the medication better – you’ve laid down the foundation to be a fighter! I wish you the best on this new step in your healing journey! ❤
Thanks, Lexi! <3
Eileen, you are my hero! So much I want to express here, but I will have to do it later when I have more time. I am sending you so much positive energy! Also, I just have to say that I love “The Work” of Byron Katie. xo
Meredith, I’m so glad I discovered Katie’s Work years ago. It’s always helped me in my toughest moments.
Eileen, indeed you are a brave, strong, intelligent, kind, caring, and thought provoking woman! Your honesty is admirable. I’m one of countless people cheering you on to wholeness and health, all the while thanking you for being so transparent with us along your journey. You continue to be a champion.
Kim, thank you so much for your kind and encouraging words.
We are with you and thank you for this very honest post. I could feel your passion and dedication in your words. My Mom who is 73, had severe polymyalgia rheumatic a 4 years ago. Same thing onset completely dibilitating. She was on all the medication you describe including the prednisone which scared the hell out of her. She also did AIP and was able to transition her body off it successfully. She just returned from a 12 day trip walking around Ireland.!!! Keep up the fight! We’re behind you!
What an inspiring story! Thanks for sharing, Susan. I wish you and your mother abundant health.
Do what you have to do. I am so glad you have shared so much with this community. It is not so much important what you treat your particular desease with, but how you have used all resources to educate yourself and this community. Without your example,many of us might have believed following a simple regiment of western medicine solutions was our only answer.Because of you, I feel more empowered about choices I have to make in treating my own desease. Like you, I have chosen to heal through a variety of means including diet, and tradition drugs ( in my case tiroscint). I do not underestimate the symphony of strategies needed to undo a modern world that has left many of us spiritually and physically ill. Bravo for being forthright! Please continue to share your insights on this path.
Thank you, Fran. I’m so glad you have found the right symphony for you, and I totally agree that it makes such a difference to feel empowered rather than victimized on our health journeys.
Hi Eileen, I am not too tech savvy so hope this is the best way to communicate. I was diagnosed with R.A. and osteo as well as mortons neuroma in 2012. I found paleo through your podcast recommended by a friend. My case was initially mild and did well on the paleo, but over the last 3 months things suddenly took a turn for the worst, joints are quickly deteriorating and sleepless nights because of pain. You are amazing. I am way too scared to try conventional meds because I tend to have a sensitive body but it may now be on the table. I can only afford to go to my Kaiser doctors covered by insurance so I am asking if anyone knows a good rheumatologist at any Kaiser in southern california.I meditate, journal and exercise but now I feel at a loss.
Bless you for all the great information.
Hi Anne. I’m so sorry you’re facing this crossroads, but if you look at a lot of the comments above, many people do well combining paleo with medication, and like you, many of us are sensitive people. I think that’s almost a characteristic of people with autoimmune disease. It may take a few tries to find what works for you, or you might get lucky on the first try. Also, just because you need it now doesn’t mean you’ll need it forever. I don’t know of any doctor referrals for Southern California, but I recommend that you try to make an appointment with one in your network sooner rather than later. You can always switch later if it’s not a good fit, but you want to stop the joint damage as soon as possible. Sending support and gentle hugs your way!
I have been battling RA for 17 years and am currently on aip diet for 4 months now without much success.
I am considering going on a biological drug to stop the the wearing away of my joints which have gotten so bad I’m currently on OxyContin I am not able to get functioning every morning without it. I am so sore and achy that I have trouble sleeping. I have tried some of the meds for RA most recent was arava. They have all stopped working for me. The next step is a biological drug. I am dealing with depression over this decision. But I feel I have no other choice. I have considered it before but always back out at the last moment.
Hi Judy. It might help you to listen to my Medication Decisions podcast. Some of my guests found great benefit from biologics. It may alleviate your fears.
Eileen, your truth and transparency inspire me. I know this decision was well-thought out and it’s natural to have a mix of emotions about such a complicated thing. I’m glad you have a good rheumy team in your corner and there’s no doubt your husband is there to hold your hand through this. Sending you healing thoughts, always.
Erin, you are right that I have a good support team, including you and the whole AIP community! My husband is such a wonderful man and such a huge support in my life. But honestly – my decision to take medication shocked him at first. My denial broke before his did. At first he kept telling me to “think positively” like that would stop the joint changes from happening. I wish that could have been true! I think the ones who love us most have the hardest time seeing us hurting, so without meaning to, they protect themselves by refusing to see it. We had ta have a deep, heart-to-heart conversation before he truly understood. Once he did, he was totally on board.
so true…you’re wise and strong!
Have you tried magnesium and boron. They really help. You should join the magnesium advocacy group on FB. Tons of good info and links in the files section.
Hi Evette. Magnesium helps my digestion and sleep quality, but has never had any impact on my RA symptoms. I’m glad it works for you, though! We are all unique.
Thank you so much Eileen for this honest and touching post. I wish I could give you a HUGE HUG right now (soon :-)!). I understand your fears and hopes. I believe you made the right decision and admire you for your courage and strength. You are an inspiration for so many of us 🙂 Good luck and I am sending you all the positive healing vibes I have in stock 🙂 <3 Your friend.
Sophie thank you so much, my friend.
I’m on methotrexate too. And paleo. The way I see it is, if this drug will stop my joints from eating themselves, I’m ALL ABOUT IT. Even though it’s really hard as a 29 year old to limit my alcohol and food choices. To give you a light at the end of the tunnel, it stopped my disease, not in remission yet, and I haven’t had any side effects except for paying lots of money for blood tests every 4 months. I love having the use of my hands.
Julie thanks so much for sharing your perspective and experience. I’m so glad it’s working well for you – may it work well for me, too. By the way, if your insurance isn’t covering your lab tests, you can often get them cheaper through Directlabs.com.
What a well thought out and considered decision. I am a physician, I have RA and am starting to flair again on AIP. Peace and good thoughts as you navigate this journey.
What an amazing physician you must be, Joan, to see the power of diet and lifestyle and also be knowledgeable about medication decisions. May your flare pass quickly. Sending a virtual hug your way.
I believe that the AIP protocol is extremely helpful in reducing many symptoms of our many diseases however I also believe that the miracles of modern medicine can be helpful tools also. We must take control of our own health using whatever tools are necessary for us to live happy and comfortable lives.
Perfectly said, Harriet.
Have you tried the full paddison program? It’s not just about going plant based, but about giving your immune system a total break (no legumes, fats, nuts etc) before adding in new plant based foods very slowly. There seems to be a lot of anecdotal evidence showing that this may be more effective than AIP.
Hi Hazel. What you’re describing is a cleanse followed by vegan food reintroductions. I did try that unsuccessfully, I think for 2 reasons. My body was starved for nutrition, and the AIP is a much more nutrient-dense protocol than vegetarianism. Secondly, soups made with gut-healing meat-based bone broths were the first foods that stopped my inflammation and started soothing and diminishing my autoimmune activity. Vegan juices and broths didn’t have this effect for me, so for me personally, the AIP was the right choice. As for anecdotal evidence overall, there are now hundreds of thousands of people doing the AIP and feeling its benefits, so I don’t think Paddison’s has more success stories, although I’m sure it has some. I think we need to redefine “effective.” Although the AIP didn’t cure me, it has had huge benefits for me (and continues to provide those benefits). It’s pain-relieving, energizing, and disease-modifying. It truly works like a medication; it’s just no longer my only “medication.” If Paddisons works for you, by all means stick with it. However, watch yourself long term, because often with vegan diets, people feel great initially and then nutrient-deficiencies develop over time. Wishing you wellness, whatever path you choose.