We discuss in this interview:
- Elvira’s first years under heavy doses of Methotrexate and Hydroxychloroquine
- How she has been able to quit Methotrexate and lower overall drug intake with low levels of inflammation
- The conflict between an unhealthy diet and an athletic lifestyle
- How Methotrexate interacts with microbiome, and its side effects
- Marginal benefits of adding medications
- How the Paddison Program stopped the pain that crept in after quitting medications
- How to deal with an unsupportive family
Clint – Thanks for joining us today with another episode of the Rheumatoid Solutions podcast. My guest today is Elvira, and she’s in Canada, and she’s going to talk about how she has been successful in reducing her medications by following the Paddison Program, changing her lifestyle. It’s a pleasure to welcome you today, Elvira. How are you?
Elvira – Thank you for having me Clint, it’s a pleasure to be here. My worst was about 15 years ago, I was on 20 milligrams of Methotrexate, and taking 250 milligrams of Hydroxychloroquine weekly and daily. Now I’m down to no methotrexate and only taking hydroxychloroquine.
Clint – And so you are also on methotrexate back 15 years ago as well. You had started Methotrexate and the Plaquenil today, you have just done the Plaquenil? How are symptoms in terms of comparison? What are symptoms like now and what were they at that time?
Elvira – So at the time, a lot of stiffness, I was at the beginning not able to sort of move my arm kind of any closer to my shoulder than this. It was just getting very stiff and that slowly improved. But now I have I just feel like I have very little inflammation in my body right now, so I’m not experiencing the pain that I was in my joints at all. So that’s made better.
Clint – Yes, and we’re going to explore the transition from your old diet to now. Why don’t we just do that first rather than going into sort of your story from A to B.? What did your diet use to look like just prior to diagnosis?
Elvira – So just prior to diagnosis, I was eating everything dairy, meats, vegetables. I have always loved sweet things, so I was consuming a lot of sugary doughnuts and sweets, and that’s still an Achilles heel now for me. That’s what I was eating.
Clint – Doughnuts and sweets. Well, the doughnuts are particularly bad, aren’t they? They buy recollection are fried, aren’t they? I mean, this shows enormous ignorance because I grew up in a rural area and I don’t think I had a doughnut until I was in my 20’s. And maybe if I only had, I might have only eaten two doughnuts in my life. I mean, it’s really like you and I in that sense are chalk and cheese. But that’s just because of the lack of availability or lack of places, we never saw them growing up. There was no donut king, for example, like across the US. I know you’re in Canada, but I assume that that thing spread across the border. I’ve seen them up there lowered into boiling oil, are they?
Elvira – Exactly. Yes. Yeah.
Clint – Well, so they’re high in sugar processed deep fried heaps of rheumatoid arthritis, creating monsters, right. Okay, so you’re eating donuts and also just a regular western diet like a Canadian, American, Australian, European sort of diet. I’m curious to know, is there also an antibiotic history with you? Did you ever have acne as a teen that was treated with antibiotics or as a child did you ever have a lot of ear infections that needed an excessive amount or even just taking maybe a prescription antibiotic on a yearly basis for various things? Do you feel that there was a role to play there?
Elvira – I think not. Not as far as ear infections or anything like that or any acne type of medication. I was on antibiotics probably young adult, mainly just dealing with bronchitis a couple of times. So for those reasons, but otherwise. No, not really.
Clint – Ok, but a typical amount of use, then? Sometimes it’s fun just to explore that a little further to look for some sort of extra contributing factor. Not that we need it, I mean, just as we’ve just joked about, the sort of way of eating is not the way that even 200 years ago in our, however, many hundreds of thousands of years of evolution, only in like a split second of time have we suddenly switched to eating foods that previously we hadn’t for eons. And our body’s just gone boom, I can’t heal this broken down and create diseases that previously also had never existed before Western age. Gout had existed from, kings and queens had eaten high meat diets yeah, rich diets. MacDougall likes to say, the rich kings and queens and their rich outcome with their diseases. But not this autoimmunity, this is something that we think only comes into society as of relatively recent times. So you’ve been hit with this diagnosis and I imagine you’ve immediately started the medications. Is that correct?
Elvira – No, because I wasn’t sure what it was, I was kind of at the fittest level that I’d been in, I had a personal trainer, I was lifting weights. I started having pain in my right elbow and I thought, Oh I must have just done something because I was only lifting (i10 pounds but still, I was doing this repetitive lifting. So I went to see the doctor and they removed some of the fluid that was kind of collecting in my elbow and they gave me a cortisone injection. That seemed to keep it OK for several months, but then slowly, slowly again, as I mentioned, I couldn’t move my arm any further and touch my shoulder, so I was a little concerned, I thought this isn’t right. Then I went to the doctor, and it must have been about six months after I started having these symptoms and they did blood work and it couldn’t find anything in my blood to show that I had rheumatoid arthritis, and so it was prolonged even further, but again, the stiffness remained. So then I decided to see a rheumatologist, and then I saw a second one for a second opinion because she also couldn’t find anything. And then he did, and he said, well either you can continue in this way, because I really didn’t want to be on medication and I thought, Well, maybe this is just something I don’t know, like a short-term thing. But he sort of said to me, no, either you take medication or you continue to get more of your joints affected and that’s what was happening, it kind of was in my left wrist, my knee and my ankle started also to have some inflammation, and then that’s when I started. So it was about a year after I started.
Clint – So it was really just a differing opinion from the different Rheumatologists that persuaded you to go and start the medications.
Elvira – Yes.
Clint – Left wrist, knee, ankle, and the persistence in the elbow.
Elvira – Yeah, right.
Clint – I know all those spots, they’re fun. So now when you started the meds, did you start taking them at the same time, the Hydroxychloroquine and the Methotrexate?
Elvira – I started actually with prednisone for a short period of time just to try and reduce the inflammation, and that helped, it wasn’t very long, I’m guessing, 2 to 3 months. And then we moved on to the other medications.
Clint – Did you get stuck on prednisone or find it challenging to get off?
Elvira – Well, it helped, it did a great job in reducing the inflammation and the pain, so I think that’s maybe why. I think it was upsetting to my stomach, though as well. So probably, I would have mentioned that.
Clint – For sure, okay. How did you feel after you started those 2 disease-modifying drugs?
Elvira – Things started improving, but it wasn’t a quick sort of fix because it took a long time for my arm to really kind of release, and for me to have more motion and mobility. I also, I don’t know, I guess I always just felt achy and a little bit stiff all throughout the entire time.
Clint – In terms of a score where zero is hopeless and 10 is absolutely outstanding. What was your experience with the combination of the two medications?
Elvira – So I would say that it was maybe a 6 for the first, I don’t know, 8 years, and then it moved to like maybe a 7 or 8 towards the end. Because I was in remission for the last few years, but still taking them all of the medication.
Clint – Right. That’s interesting because, what we hear somewhat frequently is that with methotrexate, for example, it can stop working. I know that, for example, when I stopped taking it, I felt absolutely no change, not even a single change to any joint. The only experience I had was my energy came back, that was the only thing that changed. Now I’ve been taking it, I think, 3 1/2 to maybe 4 years, something about that amount of time. And there’s an interesting amount of research going on about how the microbiome actually metabolizes, meaning actually consumes and breaks down the methotrexate and that depending on your microbiome, your likelihood to be suitable for that drug can be predicted to a confidence level now of 90%. So in the future. I don’t know how long in the future if this becomes widespread and becomes used within medical practices, they could do a stool sample and then decide whether or not you should go on methotrexate based on your stool sample, and that would be effective. So, it might go down that path, it’d be interesting to see in the future. And because our microbiome changes, that means that the effectiveness of the drug changes as we do as well. That’s one of the variables that can influence the effectiveness of the drug.
Clint – That’s one mechanism. There are other mechanisms that I’m less familiar with which are probably at play as to why medication can change its effectiveness. But my point being, it’s interesting that you appeared to actually do better over the years with the drugs than actually need to switch or to say they’re not working, Dr. What should we do?
Elvira – Yes. And as I chatted earlier, I started to reduce the amount of methotrexate that I was taking, so maybe that was happening as well. I don’t know that the effectiveness of it wasn’t as high, I don’t know where my body had changed in some way and it didn’t need as much of it.
Clint – Just explain that because we did just have a 30-second chat about this before we record it, but in the past sort of 5 years or so, you begin to know, I think you said further back, but you tell us that you started to taper down the meds because you felt that there were some side effects.
Elvira – Right. So I would be taking 20 milligrams or 8 tablets every Sunday, so once a week. And each time I did that, I would just feel really lethargic because it just was so much medication for me and also started getting headaches. So every Sunday evening, I would get a headache that would turn into a migraine, and I would ask my doctor and he would say, Well, I don’t think that’s the side effect of keep taking the medication. I didn’t want the headaches, so then I would kind of do it on my own and I would tell them I have reduced it by two and the headaches were getting a bit better and then I reduced by two. Until I guess last fall, I was down to only 2 tablets, so 5 mg once a week. And what he said to me in November was that you’re on this homeopathic cocktail of drugs now, you might as well just stop taking it. I said, Well, any drugs for me are not homeopathic so yeah, I’d love to, I’d love to stop taking it. So that was the feedback.
Clint – That’s one of the funnier phrases I’ve heard from Rheumatologists. You’re on 5 mg of a cancer drug, it’s just so homeopathic. It’s hard to joke and then not to sort of do the right thing and say, yes, look, it is a cancer drug, but it’s only a very small dose, even at the maximum dose, right? It’s even at 25 that’s still not the cancer therapy level. And then when you were right down at that point to 5 mg, weren’t you?
Clint – Let’s speak as patients, right? I can say that I started at 10 mg on Methotrexate, and the impact for me was very noticeable and it hit at 3 weeks, exactly at t21 days. It feels like I kind of like almost manifested the effect or imagined a sort of this to happen. But my doctor said it normally takes 21 days, I didn’t mark the calendar but I could retrospectively say it happened at exactly 21 days I started to feel better. My symptoms dropped by about 60%, so I was, on the scale that I asked of you earlier, zero to 10, I would say my drugs were, mine was like a 6 as well, maybe 7, maybe a 7. Then I came out had a heap of side effects with it of fatigue and just feeling like lower self-esteem and all sorts of things. But yeah, sure, I was 7 or 7 out of 10. And then I chased that last 40, 30% with increasing of medication, trying to get symptom-free. Thinking if I’m going to be on it, I want the thing to clear out my symptoms at least. That was a chase that didn’t quite ever get to an end. I got a little chatty there, and I forgot what my question was going to be for you. But yes, so anyway, we were laughing, weren’t we about the Homeopathic Cocktail? I love it.
Elvira – I was like, what? But I’m so happy to hear that I didn’t have to take it any longer.
Clint – That’s right, let’s talk about that obviously, being a prime thing we want to cover here, but just not to just to again go back to this 5 milligram. From the patient’s viewpoint that is not insignificant because, yeah, one of our long-term Paddison Program member Hannah. She’s in the Netherlands, and she was on our podcast years ago when I first started the podcast. She got down to 2.5 mg per week, and she stayed on that for 12 months because she noticed that coming from 5 to 2.5. Her rheumatologist said, Well, just stay on that little bit of dose for as long as you want. And it gave her that peace of mind, and she felt that there was a degree of impact of that, even at that small level. So as the patient, it’s not insignificant.
Elvira – No. And I felt those pains in the same way when I was eating dairy and meat. I would go down to 2.5, and I think maybe I should take one more because I would feel a little bit of pain. However, since starting Paddison Program in November until now, which is 4 months pretty almost 4 months, I haven’t had those twinges of pain. So that’s a big difference and I felt a huge reduction in inflammation in my knuckles. Not that they were ever really hugely inflamed, but I could always tell that there was inflammation there.
Clint – Yeah, absolutely, which is a great segue way for us to now talk about your transition onto the Paddison Program. How did you find out about us? First of all, was it a referral to see something online? Then secondly, how did you embrace it with sort of cold feet or dive in the deep end?
Elvira – It’s interesting, I found it online, and actually last January, it started working with a naturopath and he mentioned the Paddison Program and I kind of looked at it but I didn’t pay much attention. I mean, he also told me try starting off with eating rice and adding things to it, so that elimination diet, so I did that. And then I switched to her thinking, well, maybe a carnivore diet would work, so I was kind of doing a million things throughout the last year. It took about a month, I did a one week only meat carnivore diet beef specifically in some organ meats. And then I felt some relief, but it wasn’t successful. Then I started eating all of the same things that I was eating again. So I didn’t do again the elimination diet when I started your program, but I did stop dairy and I stopped eating meat. I kept things quite bland, and now I’m just following your recipes and it’s been successful.
Clint – Yeah, absolutely. So what are some of the meals that you’re making at the moment?
Elvira – So I enjoy the brown rice with the black bean, I guess, cumin and onion. I like that. I like just having some cauliflower steaks with sauteed vegetables on the side. A lot of the soups, so the squash soup, I really enjoy salads, healthy salads and things like that. And also the juices, I really love that cucumber and Celery and ginger.
Clint – Awesome, and what is your family like when you’re making all of these weird and wonderful meals for your health? Do you have friction there with making two or three meals for everyone?
Elvira – I do have some friction with my family just thinking that this is like such a radical shift because they are all meat-eaters. So that makes it a little bit difficult. It’s like, why are you doing this? And you should be eating meat and you’re missing all these important vitamins or minerals and nutrients. So that gets a little bit difficult at times. I try telling them I’m feeling better.
Clint – Two comments on that. First of all, there’s a study that every second plant-based person has shared over the past 10 years or so. I think it’s from the American Dietary Association, and it says that the quote something like a well-planned vegan diet, is appropriate for human health at all stages of life, including children and pregnant mothers. So it has been researched the heck out of, and there is no nutritional deficiencies at all. As long as you’re eating diversity in your diet, you’re meeting your daily calorie requirements, and you’re taking vitamin B12, then you’re actually going to reach more of the recommended daily guidelines than someone who’s on an omnivore western diet. So when people say, where do you get your protein? And you look online and there’s where you watch a film like, the game changes and there are bodybuilders and people breaking records. Where you’re getting your potassium, for example, and 98% are deficient in potassium because they’re just not eating enough fresh fruits and vegetables. The number one intake of on-again we bag America, the number one intake of plant-based foods in the United States comes from potatoes via french fries. Okay, so like it’s a catastrophic sort of statistic that that’s the way that potatoes are coming into the diet is through an oil rat, like we’re talking about with this with the doughnut. And also the funny thing is, and this is something I’ve never sort of commented on before, but what’s apparent here. Is that those of us who have to change out of it, as sort of classic Western diets and into this way of eating are coming at that previous way of eating because that’s what all our family did, just like yours, right? Yeah. Therefore, the escape to the path of wellness is harder because the criticisms or the misunderstandings are the greatest because that’s the environment you’re coming from.
Elvira – Yes.
Clint – So to extract yourself is like Velcro, and you stuck to the old ways, because that’s how in part you ended up in the situation.
Elvira – Yes, and it’s so detrimental to feel but you can do this with your whole family kind of saying, no, no, what are you doing? You’re changing things, you’re not the same as we are.
Clint – Yeah. So why don’t we talk about that? Has there been anyone in your family group that you’ve inspired or that who’s actually sort of rubbing their chin thinking, You know what? Elvira might be on to something here. I’m on all these high blood pressure meds and I’ve got maybe stents for heart disease and all of these things going on that that we know as a direct result of diet, right? Is there anyone looking at what you’re doing thinking I might do what you’re doing?
Elvira – Well, in fairness, my father, did have a triple bypass, probably about 6 or 7 years ago, and he really did make a switch some of his diet. He still is a meat eater, he doesn’t want to stop eating meat, but he has reduced substantially. And he’s always been one to promote having sort of stews and vegetable-based foods but still a meat-eater. And he has reduced his consumption of, let’s say, sausage or those fatty types of meat, which is good, much healthier for him. But I don’t know if it’s my influence he’s kind of done that on his own. So you can’t really take any credit there.
Clint – You’ve got a tough audience, haven’t you? Your immediate family are not exactly helping you to go there. You’ve worked against the tide here. So it’s very, very amazing what you’ve done. It’s really great.
Elvira – Thank you for the encouragement.
Clint – What else was urging you along? Was it the pain? Was it that you saw examples on interviews like this that set that seed and planted that seed? What was it that you kept coming back to in your mind?
Elvira – Yeah. Wanting to eliminate the pain, wanting to be drug-free and also really, you know, watching your sort of testimonial of what you went through and how much your life changed and how you got rid of the pain and others on your site that have also shared their stories. So that really was beneficial and helpful to me.
Clint – You know what, there’s a fundamental sort of 4 minute mile barrier in all of us with these things. And until we see someone else do what we thought was impossible or until we get a glimpse of a strategy that appears to work, that’s when the hope comes back and it triggers something inside of us. So I’m very blessed and grateful that whether it be mine or a combination of my stories and others has lit that fire for you.
Elvira – Yes, because it is possible someone else has done it, as you said. So that’s why I think, and I’m feeling better so there’s got to be something to this.
Clint – That’s right, nothing beats results. Can be as much hype and as many websites about ridiculous, life-threatening approaches like the carnivore diet. And there can be just hyped when authors can make a lot of money and selling things to people. Because people want to stick with some of the foods that they grew up with and they’re addicted to in terms of the way they sauce or spice these foods and make them indistinguishable from the actual piece of flesh that’s cut out of the back next to the spine of the cow that was walking a few weeks ago. It can be ways for people to make money, and the downside is the community then are confused. As Dr. Brooke Goldner says, if you create enough confusion, you can prevent progress. And that’s what a lot of these, alternative and unscientific approaches do, they create confusion. And then like you, you thought, I don’t know, should I try this or that? So what are your current challenges and what are your current ambitions now with your health?
Elvira – Ok. The donuts are still a challenge, I still love sweets, so I try to do things naturally, but I have a cookie or two. My goals are to continue trying to eat as healthy as possible. And then to get off of the remaining Hydroxychloroquine medication that I’m on see if I can live a healthy lifestyle without medication. And keep the inflammation of the rheumatoid arthritis at bay.
Clint – And how is your elbow that took a lot of damage 15 years ago? And the question comes from someone who has a lot of experience with damaged elbows, and I know the challenge involved. So are you able to use it now in a way that you feel happy with?
Elvira – I feel much happier because before doing a downward dog or something like that in yoga, it wasn’t really able to push or straighten my elbow completely. Now I still do have an I don’t know if you ever have that sort of pulling or pain just behind here and down to this area I don’t know. I think it’s tense and it’s not because my elbow is not placed, so that’s just something that I still sort of struggle with.
Clint – Do you ever do tricep stretches like this?
Elvira – No, but I will.
Clint – Definitely do that, just what you can. If you need to do it up against a wall, even you can put the elbow against the wall and get the stretch down here. And then I just actually have published an episode with Teresa, who is 62 years old, and I want you to watch that podcast episode, and she uses pull-ups and chin-ups. Even if you can’t take your body weight just attempting to do this each day and trying to get to hang for a few seconds from an overhead bar. I started doing that because of elbow and rotator cuff sort of just irritation, nothing serious but bothersome rotator cuff shoulder blade issues for 4 years, postural related, I think. And it’s been the best thing I’ve done exercise-wise since I used to do Bikram Yoga 15 years ago. So get yourself an overhead bar and I want you to work on being able to try and hang from an overhead bar. For you, because the elbows are compromised, don’t relax and take all the weight through the elbow because then the elbow is under pressure. I want you to have slight engagement so that the elbow isn’t as straight as what it mechanically will allow. But maybe there’s just a few degrees of extra little flexion in there to not be, just on’t take it. Yeah, just so engage the arms and the back and hang. What you’re doing in that position is you’re building strength. It’s isometric, meaning stationary, but the muscles are all engaged and the hands have to be really, really engaged. It builds grip, strength as well as all throughout the back and arms. Now the reason this is so good, the long list and watch that episode, you’ll hear me. But I really would like you to do that because I think you can get rid of that pain in the back of that elbow and begin working out again, even if it’s just to try and do some pull ups, which is very, very adequate and comprehensive as a workout is just to attempt to put the body. So I would do that and stretch the back of that area and feel free to use pressure points in there as well. Push those sore bits, anything that soft tissue can be pushed and prodded and stretched and worked in.
Elvira – Yes, I do notice once I’m feeling that pain, if I massage it even for a couple of minutes, it releases it and it’s much better until maybe later in the day or something like that.
Clint – If you can buy on Amazon a small roller, one of those roller foam runners that are at the gym, you can get one that’s maybe only about maybe a foot and a half two feet in length. And you can get down on the floor and you can roll that roll the elbow on the roller, and that feels really nice. Yeah, and you can do that while you watch a TV show or something only for a few minutes. Because it’s a small muscle, it doesn’t need like the legs a long time. But that’s just such a nice way of getting it done easily.
Elvira – Yeah, that’s a good idea, and it’s simple and can relieve that sort of tightness that comes as a result.
Clint – And the roller can double as a you can also do other body parts with it as well. So well done, I love the plan going forward and if you hit the blood test results with your inflammation markers and your doctor still considers your homeopathic mix to be trivial enough to test coming off the hydroxychloroquine. Then who knows how you go here. As we have less and less medication, we have more and more responsibility for our lifestyle, you’re basically shifting the responsibility to yourself. But look, you see what happens when children come off their training wheels and they ride their bikes, it’s exciting and thrilling, and sure, then you’ve got, to ride carefully and safely. But these are lessons that the young child embraces and we might fall a few times.
Elvira – it’s true. You’ve got that kind of the impetus of I’m not on medication, so I’m going to do what I need to do to stay off of it. Right? That’s kind of on your mind now another you have to be, you just need to be careful.
Clint – Yes, and you still need to obviously be very careful when you’re on hydroxychloroquine as well. Dr. Nisha Manak said on one of our live calls with our members, she called it vitamin E for Plaquenil, as if it was also. Joking about that it’s not that big a deal. So your treatment regime right now, just being on Plaquenil is very, very mild for rheumatoid arthritis. So congratulations, you’ve done well and I appreciate you coming on and sharing. I also appreciate that when you haven’t got that family encouragement and the cheering that can often be so helpful that you’ve done this against greater odds, so well done, and keep it up.
Elvira – Thank you. Clint, thanks for having me here and for chatting.