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what is rheumatoid arthritis rem
Podcast, Provider Interviews

What is Rheumatoid Arthritis Remission? With Dr. Amigues

November 30, 2023
68 min read
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Video of conversation

Summary:

Cheryl Crow interviews Dr. Amigues, who is both a rheumatologist and a cancer survivor.  Dr. Amigues explains what remission for rheumatoid arthritis is, and how modern medications have made it more achievable than ever before. She and Cheryl emphasize the importance of finding a rheumatologist you can trust and truly partner with.  Dr. Amigues delves into the advancements in RA medications and treatments, highlighting the transformative impact they can have on patients’ lives. 

Cheryl and Dr. Amigues touch upon the significance of accurately diagnosing RA and the potential for misdiagnosis, especially as this influences the ability to receive appropriate care. They give valuable insight into the journey of living with RA, and bring a positive perspective that thriving can be possible through effective medical interventions and lifestyle modifications. 

Episode at a glance:

  • Being a rheumatologist: Dr. Amigues finds joy in her medical practice, especially in encouraging patients to live life to the fullest despite challenges. She emphasizes understanding the patient’s perspective and asking thorough questions.
  • Importance of Accurate Diagnosis: The complexity of rheumatological conditions is acknowledged, with Dr. Amigues mentioning the importance of differentiating between various disorders for accurate diagnosis, while considering factors like comorbidities to create effective treatment plans.
  • Individualized Patient Care: Dr. Amigues emphasizes the importance for patients to find a rheumatologist they trust, fostering personalized, comprehensive care. Advocating for accurate information and addressing medication concerns are also important while navigating healthcare for rheumatic conditions.
  • Rheumatoid Arthritis (RA) Remission: Dr. Amigues shares the possibility of medicated remission in rheumatoid arthritis, highlighting advancements in treatment options and balancing these with lifestyle adjustments.
  • Management through lifestyle adaptations: The integration of lifestyle changes alongside medical treatments for managing RA is discussed, with a focus on using exercise and movement as beneficial strategies. 
  • Mental Health and Self-Worth: The conversation explores psychological aspects of living with chronic diseases, addressing the concept of accepting and coping while acknowledging that life may present ongoing challenges that impact adaptability.
  • Language Matters: Being mindful of the language used with chronic illness makes a difference. For example, patients don’t fail medications, rather, certain medications may not achieve the desired result. Terms like “difficult to treat” should not be applied to the patient but rather to the disease itself. The importance of using sensitive language when discussing rheumatoid arthritis and similar conditions is also expressed.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Isabelle Amigues, MD, is a rheumatologist. She trained both in Paris as well as Columbia University, in New York City and worked at National Jewish Health for over 5 years.. She is based in Denver, CO where she sees patients. She is the author of multiple book chapters and scientific articles.

At age 40 she was diagnosed with stage IV metastatic breast cancer. A timely meeting with a non-traditionally trained practitioner taught her a different approach to disease. She experienced the power of meditation, visualization, energy healing and love. Her journey through cancer inspired her to learn more about these alternative techniques, and now that she has studied many of them she has integrated them into her own practice of medicine. 

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Interview between Speaker 1 (Cheryl Crow) and Speaker 2 (Dr. Isabelle Amigues)

Cheryl:  00:00

I am so happy today to have Dr. Isabelle Amigues on The Arthritis Life podcast. Welcome!

Dr. Isabelle:  00:06

Hi, thank you so much for having me. I love what you do.

Cheryl:  00:09

And you, too. It’s one of these things where we’ve known each other on social media. And now, we’re finally talking in real time. So, just as a quick introduction, can you let the audience know where you live, and what is your relationship to arthritis?

Dr. Isabelle:  00:22

Oh, yeah. So, I live in Denver, Colorado, in the US. And I am a rheumatologist. And I’m particularly specialized in rheumatoid arthritis. First, I did a lot of research in rheumatoid arthritis and heart disease. And then, I moved to Denver and I did a lot of research in interstitial lung disease and rheumatoid arthritis. But yeah, and I love all rheumatology, to be frankly honest, anything inflammatory.

Cheryl:  00:49

Yeah. Well, you perfectly led me to the next question, which is, why did you choose to specialize in rheumatology?

Dr. Isabelle:  00:56

Ah, yeah. I love that question. It’s like one of my favorite questions, with the, “What is rheumatology?” And I’m like, oh, Dr. House without the attitude.

Cheryl:  01:06

Without the attitude, exactly. Dr. House with a much more better bedside manner.

Dr. Isabelle:  01:11

Yeah, or a different type of attitude. But, so yeah, I discovered rheumatology in France when I was a medical student and then a resident. And I think it was my second training rotation. And I fell completely in love, but because it’s, you know, the first or second rotation, I didn’t make much of it, because I tended to just like everything that I was exposed to. But I kept going back, and I kept going back. And at one point I just remembered, and I just realized, I was like, every single disease that I like are inflammatory. Like, I like systemic disease. And I like when it affects the whole body. And I really liked the thought process. And then, so then, I, you know, I finished my residency and my fellowship in France in rheumatology, and then I moved to the US. And I repeated my residency and had the choice of changing specialty. And I could not imagine being anything else than a rheumatologist because I had started experiencing what it is, which is that I always say this. I say, in rheumatology, you have 1/3, 1/3, 1/3. One-third of patients that are undiagnosed, and I love that part. Like, I feel, I really feel like Dr. House and I feel very privileged to have had two trainings. Because I feel like I’m very clinically oriented with a research background. So, it’s kind of like this really cool thing. So, one-third are undiagnosed. 

So, it’s very stimulating, like intellectually stimulating. One-third is actually sort of easy bread and butter rheumatology, which is, you know, easy rheumatoid arthritis. Not every rheumatoid arthritis is easy, but there are some that are very, like, straightforward; or easy gout, or easy ankylosing spondylitis, you know. And then there’s one-third, where it’s sort of, well, we have to deal with what’s going on with the patient. So, maybe they do have rheumatoid arthritis, maybe they do have ankylosing spondylitis, but there is other stuff going on. There is maybe fibromyalgia associated, maybe there is chronic fatigue syndrome associated. And so, then it becomes this, you know, real work as a physician that’s not just a technician, but also like a human being. Like, okay, how do I get you to feel better? How do I get you to be in your best health, working with you and helping you, you know, empower you. So, there was that. And then, at the end of the day, one of my favorite thing about rheumatology other than, you know, what type of disease am I going to encounter, what type of patient am I going to encounter, it’s basically this relationship with the patient that, you know, like, a lot of my patients are lifelong patients. And I even have patients that I met when I was in New York City when I did my second fellowship that are still in contact with me. And it’s, it just feels good. It just, I feel part of their family. I feel like they are part of my family. And so, that is something that I really cherish, this relationship with my patients. So, that is why. Twice.

Cheryl:  04:16

Yeah, I love that. Well, yeah. And I feel the same way about my rheumatologist. I’ve been so lucky that I’ve had her in my care for over 20 years now. And I invited her to our wedding, like, she is truly an important part of my life. And it is, you know, as you were trained as a physician, it is one of those things people think about, like, do you want to have that long-term versus maybe emergency room where you might see lots more patients in your lifetime, but only see them for a short period of time versus rheumatology. So, and I also, I always say this, because I interviewed, on one of my very first interviews I ever did for Arthritis Life, it was before the pandemic. It was in-person in Seattle with a rheumatologist. Not mine, but a different one. And he said, I said, “Why did you go into rheumatology?” and he said, “The diagnostic dilemmas,” he really likes the mysteries. That I always said, even though I’m so passionate about rheumatology, and I love, you know, working in this field as an occupational therapist and a support group leader, I actually would find that so — I feel like I would find it really stressful. I have a low, like, or my therapist said, you know, one of the things we worked on is ambiguity tolerance, like tolerance for those unclear, black and white. So, even though my role is helping support people in managing their condition, I don’t mind the ambiguity of that. But having the responsibility to make that diagnosis somehow seems really intimidating to me. Like, what if it’s, what if you’re wrong? What if it’s lupus? What if it’s, you know, but I guess you just learn to be flexible, right?

Dr. Isabelle:  05:51

Mm-hmm. And so, something I learned in France is — and, you know, there’s a lot of value from having done this dual training. So, I saw your face and you’re like, why do you have to do two trainings, and I see it as, to me, I see it as a luck, right, like some chance. Because, like, not everyone gets to not need to be productive forever. And I remember, I was doing some research at Sloan Kettering when I wasn’t completely sure I would do rheumatology. I came to the US. And I did some infectious disease research. And I remember this Doc, super well known, I think he created the Shingrix vaccine. And he said, you know, “As fellows,” and he was talking to the other fellows, I was a resident at the time in France. So, like, well, before I came to the US, at least for good. He said, “Fellows and residents is the only time we are not asking you to be productive.” And I remember like, so clearly. And I was like, wow, this is so valuable. And he’s right. Once you’re an attending, you have to be productive. You have to see a certain number of patients, you have — as a fellow, you’re asked to learn. And so, I was like, okay, okay, well heard. And so, that is actually one of the reason I had no problem repeating my residency, no problem repeating my fellowship, extending my fellowship, because I was like, as much as I can learn, I’m learning. And I still learn, of course. You still learn so much as an attending. But like, at the time, I was just like, yeah, my job is to learn and I love that job. [Laughs]

Cheryl:  07:25

That’s amazing. No, and I think, I do think that, you know, people self-select into the medical specialties, as much as they’re able to. I know you can’t always control what you’re placed and such. But into the, you know, specialties that work for them. And so, yeah, I always, you know, I just, I find rheumatologists to be some of the most, you know, really holistic, caring, you know, I don’t even know what to say, you know. They’re kind of known as cerebral, like, very, like, you know, kind of nerdy in the best possible way, as a compliment. I mean that. And so, you know, and on the topic of learning, I think a lot of people that listen to the podcast, we have a big range of people, there might be people who are newly diagnosed, or like a family member or friend of somebody with inflammatory arthritis, which when we say inflammatory arthritis, meaning that rheumatoid arthritis, psoriatic, ankylosing spondylitis, the kinds that are autoimmune. And then, we have people who’ve been living with it, like me, for 20 years. So, we have a big range. But I’ve something I’ve noticed is a lot of people are confused about what remission means, when you live with one of these conditions. Even if you had a long time, like I have, I have to be honest, I had to look up — like, what is —? Because it seems like everyone has a little bit of a different definition. So, can you tell us a little bit about what does remission even mean? And then, we can delve into some more specifics?

Dr. Isabelle:  08:49

Absolutely. So, I think the first and important question is why we came up with that term and what it means. And so, I think we talk about disease remission and rheumatoid — I’m going to talk about rheumatoid arthritis because it’s the one that I’ve looked at most. And when you’re starting to, when we were starting to look at the term ‘remission’, it was associated with remission/minimal disease activity. And that happened around the time that we started realizing that we need to have — so, at first, they were calling it ‘treat to target’, and then they called it ‘drug to target’ and it really started with the advent of biologics. And so, basically, then, you know, I’m a nerd. Clearly, you said it, and that’s true. But I love the history of rheumatology. Like, it just, when you actually go deep into the studies, you start learning about how we are making the decisions that we’re making today. And so, before, when we didn’t have all the biologics that we have, we used to do a step-up approach. And so, you would start with anti-inflammatory, then you would add maybe methotrexate, then you would add sulfasalazine, then you would add, you know, leflunomide, and so on, or plaquenil, and so on, you know, like, depending on which one had been shown to prove something. And they were doing this type of therapy, and then there’s a couple of trials, including something called SMART trials, where they found that starting with a bang had more chance of putting patients into minimal disease activity and remission. And then, because we started having more patients in so called remission — and I’m gonna, I’m gonna define it — then we started defining what disease remission is. Okay, so it sounds like we should have defined the disease remission before, but it really started after because until, what, maybe 20 or 30 years — I’m old now.

Cheryl:  10:50

Well, yeah, I was just looking at — so, the first, because I always forget if it’s the late 90s or early 2000s, the first biologic was approved in 1999. So, it’s like, I actually am really glad we’re going into the history. And because I encourage people to look at the history to understand it, because it helps you be less fearful about the medications, when you understand that your, the disease before the late 90s and early 2000s, this disease, it’s a progressive disease. We didn’t have, like ‘we’, the medical field, didn’t have the tools that we have now to put it into remission. So, I’m glad you mentioned all that.

Dr. Isabelle:  11:27

Yeah. No, and I think it’s important to realize that this concept is fairly new, right. So, the SMART trial, I think, is like 2003. But in fact, that something like this, it’s much better, it’s like, first, we’re putting biologics. Then suddenly, like people are, like, the people we were putting on biologics — so, the TNF inhibitor — they were the worst, they were the people with the worst disease because we didn’t want to use those for anyone. And it’s only maybe 10, 15 years later that we realized, like, what are we doing? We should put patients on biologic as fast as possible if they do not respond to the, you know, first line, because we can get them to remission. And at one point, there was this concept of, what is disease remission? So, disease remission in studies, in studies, is no more pain, no more swelling, no more joint stiffness. And so, really, when you’re thinking about it, it’s like, wait, what? Oh, so I have no more pain, I have no morning stiffness, and I have no more joint swelling, I am in remission? You may still have a bit of fatigue, you may still have pain all over your body if you have, you know, small fiber neuropathy or fibromyalgia. And but normally, no more joint pain, no more swelling, no more morning stiffness; that is what we call disease remission. 

Cheryl:  12:49

In the clinical studies?

Dr. Isabelle:  12:50

Yeah, exactly. And associated with it, there is the minimal disease activity, which when we say we are drug, like, what drug to target, we are aiming for that. We’re aiming for — so, this is really funny. You can have one painful and/or swollen joint. That’s it. One. One. If any — and that’s what I tell my patient, I’m like, anything more than one, I’m not happy. I’m not happy. And I’m talking about rheumatoid arthritis. So, that’s really important, because, unfortunately, we’re not yet there in lupus, we’re not yet there necessarily in vasculitis, we’re not yet there in psoriatic arthritis. And we are aiming and we could get there, but it’s not as obvious, I would say. So, yeah. So, then, you know, the studies show, you know, like, once we had enough patients that went into this minimal disease activity and this is remission, then, you know, the sky’s the limit. And so, then physicians were like, okay, well, what can we get? So, yes, we can get disease remission. Can we get cured? And so, that’s a very different story. Cured means that you don’t have any treatment to achieve this disease remission. And there’s no evidence of activity disease. And unfortunately, so far, not too great. We cannot say ‘cured’. And honestly, like, I would say that the vast majority of my patients have no problem with that, because as long as you live a completely normal life, like, I mean, it’s just, its terminology, right? It’s just a word.

Cheryl:  14:24

Well, and I think that that brings up the point of is it medicated or unmedicated remission? So, I often tell the story about I was extremely lucky, I think, because my RA was so aggressive and severe at the point or just clouds aligned, I don’t know what happened. But in 2003, I was put almost, I didn’t — I wasn’t able to do sulfasalazine because I had an allergic reaction to it. So, then, I was immediately put on methotrexate plus Enbrel, and I went into swiftly into remission. Like, it was night and day, like, I couldn’t open my hands from a fist and then I was playing soccer again. And then, riding around, you know, I injured myself swing dancing the next year. I mean, I was running, leaping through the fields, and a lot of people — anyway, side note, people often make fun of the drug commercials. But because of like, not everyone’s like running through a field of sunflowers. But I’m like, but it’s not inaccurate to say that some people are. And so, but point being, so, that was, but I still had to stay — at that point, the thought was, and I don’t think, it probably depends on the patient now — to stay on, stay on the medicine. I know some people now are able to get into unmedicated remission. 

(commercial break)

So, there’s medication remission, where you’re still taking your medicine for your rheumatoid arthritis. And then, unmedicated is where you’re maybe, often, you slowly wean down and stuff like that for a little while.

Dr. Isabelle:  15:44

And in the — so, when was it? In the early 2000s, yeah, 2005, around that time, there was a whole — again, like, this is just the history ever rheumatology. Like, I’m lucky that I’ve got, you know, two trainings, and I’m very interested in that. But in the mid, like, 2003, 2005, 2006, something around that time, basically, we started wondering if we could cure patients. So, what happened is that there is something called ‘early RA’, which is the window of opportunity. And so, our question was, can we put a patient in remission, and then cure them by treating them early? And we were so hopeful. But so far, not super exciting, not as exciting as it sounds. And it looked like, yes, there are some patients who are going to develop something that looks like rheumatoid arthritis that’s not necessarily rheumatoid arthritis. And, you know, you may start them. And in France, we were pretty lenient in giving biologics if methotrexate didn’t work, you would put them on a biologic, and then they would not need it. But the question later on was like, was this actually rheumatoid arthritis the whole time? Or was it just some sort of reactive arthritis that responded to TNF inhibitor? So, honest to say, I think that aiming for remission is a really cool goal, because it allows you to have a totally normal life. And the only time you’ll remember of your condition is when you have to give yourself the medication. 

And so, you know, that’s fair, like, you know, it’s not really a big price to pay unless you have complications with the medication, and then we can talk about that. But, you know, this concept of cured, unfortunately, in rheumatoid arthritis, I think it’s really hard to — I think that some patients, if you take them really early, you can maybe decrease the amount of medication that they need. But I don’t know that I’ve had anyone that has not needed medication. And like, over the years. Maybe for a year or two, they don’t need it, which is great. And, you know, like sometimes I have patients that need, like, one injection, you know, or one infusion, like, it’s very littered. And we work, and then there’s all of those anti-inflammatory things that you can do, and that some patients are so into, you know, meditation, relaxation, and exercise, and eating an anti-inflammatory diet, and I’m all for it. I’m all for it. And sleep. Yeah, exactly. But, you know, it depends on who you are, like, and I’ve, I will be honest, I’ve seen some patients who don’t need any medication on this. I’m usually there, just in case. But yeah, so it does happen. And I’ve seen patients who even with high CCP, be in what we would call ‘cured’. I just consider it remission, because I never know when, you know, and at the same time, I don’t want them to freak out and to feel like it’s gonna happen at any time, like, a disease is lurking, you know, when is it coming back. Because, again, we have amazing treatments. So, it’s not a thing that’s — living, for me, like, I want my patients to leave the most normal life as they can, without fear. Because this is such a known condition. And we have so many, so many options now.

Cheryl:  19:19

Right. Well, and I think it’s funny that you’ve used the phrase ‘normal life’. So, because I, one of my first podcast episodes actually was, ‘Can you live a normal life with rheumatoid arthritis?’ And the only reason I actually thought about that title is — this is Episode 29, so I’m gonna put a link to it in the show notes — but is that, so we’re gonna go to a little tangent, but we’ll go back to remission, but is that I actually discovered that on I had a blog called theenthusiasticlife.com. And I somehow got onto some of my analytics and it said, what are the search phrases on Google that are leading people to your website? And one of the search phrases was, ‘Can you live a normal life with rheumatoid arthritis?’ 

And I think, this is just my perspective, I think that, you know, it really all depends on what is your definition of ‘normal’, right? If you put if you put your definition normal as a life where you never have to think about health, and go to the doctor, or anything like that, like, no. For me, it’s not, that’s not my life, right? And so, I’m trying not to like summarize this without like rambling on forever. But the point is that, like, I do think this is maybe me being like a liberal arts undergrad student. But I do think that sometimes the phrase ‘normal life’ rubs me a little bit the wrong way in the same way, as like, having, “Oh, as long as the baby’s healthy,” can kind of — I’m not saying about you saying normal life, but just in general, because it’s like, oh, well, not all babies are healthy, and they still are a hundred percent, like, worthy of, you know, love and respect. Of course, we would all wish to be healthy, but we’re not. 

And so, not everyone’s healthy. And they can still thrive and still have a wonderful life alongside their conditions. So, that’s kind of the conclusion I came to in that episode was, you know, acceptance. And I’m accepting that this is part of my life. And I know this is very congruent with how you see things, too. So, I’m not, I’m not saying —

Dr. Isabelle:  21:20

Yeah, absolutely. Absolutely. I think that, like, you know, I was talking to you about the three type of patients, right. Like, the — and it’s really three types of — I see three types of patient, I could say three types of conditions. First of all, I use the word ‘condition’ because I think ‘con-dition’, right. So, you’re working with versus of ‘dis-ease’, which is like something that doesn’t, like, you’re not in ease. Dis-ease.

Cheryl:  21:47

I like that.

Dr. Isabelle:  21:48

Yeah, and so, ‘condition’ has this idea that we’re working with it. And so, as someone who had cancer, I realized that the way that some docs were seeing me did not work for me, and the way that some people saw my disease did not work for me. And I did not want to feel that I was having some sort of enemy inside of me that was ready to kill me. I didn’t know if I would make it or not, that faint voice that I didn’t want to fight. And the idea of fighting means that you’re spending all of your energy against your body and against, so, against this disease, and against your body. When really, what it is, to me, and from my own experience as a patient and my own experience as a physician and with my own patient, like, I see the role of a rheumatologist to help my patients. But at the end of the day, I’m just helping in the sense of, like, the patient is the one working with this condition. And they have — how to explain this — they are working with it. And they have to listen to their body. What works for them, what doesn’t work for them, what do they need, what do they not need. I can only offer my expertise from research, from my own experience, but at the end of the day, the patient is living with it, right? And so, it’s with it. 

And so, normalcy is really difficult to define, because I think every single person has something that they’re dealing with, right. And so, I mean, the number of people around me, I do meetings where I invite someone and I interview someone from my community that I find interesting, and the number of things that you would not know how much everyone is not normal in that definition of what is normalcy, right? So, yeah, we’re all normal. And we’re all abnormal. Because we’re all so unique. So, I think, yeah, to come back to this, I think that seeing rheumatoid arthritis, since that’s what we’re talking about, as an enemy that you want to get rid of absolutely at all cost, is just going to put so much energy on something, like, instead of putting this energy towards healing and towards caring for yourself and for your body that’s trying to do its best. And instead of working with it, we’re just like, you know, fighting. And so, like, that’s — it’s funny, I actually gave a TED talk about that. Because I was like, you we have to see our body as this, you know, this unit, like, I don’t know, like all of those cells that are trying whatever they can, you know, to help us. And sometimes, they need help. 

Cheryl:  24:52

I know. I’m really into the language of this and I’m a hundred percent congruent with you. I don’t — I do sometimes use the phrase ‘warrior’, like ‘rheumatoid arthritis warrior’, because it’s really common in the social media communities. But yeah, I don’t, I feel like the warrior metaphor applies to me with my athletic background of thinking about like, I’m, even though I’m tired, like, I’m gonna get my energy together, and I’m gonna fight for the life that I want, not necessarily fighting against, you know, my body. So, I think that’s a really beautiful way to see it. I do think when most people say, “I want to live a normal life,” it’s really a shorthand for, I want to be able to do the things that bring me joy, the things that are meaningful to me, you know, and that used to be actually the definition for occupational therapy, or the tagline was, like, ‘Helping you live life to the fullest’, or helping you engage in meaningful activities. I’m like, I can’t, it’s so amazing. There’s a whole field devoted to that, you know. Sorry, I’m like giving a shout out to occupational therapy. Yeah, so there’s different ways to enable people to engage in meaningful activity. You can do it through the medication that gets to the source. And obviously, that’s a big part of my treatment toolbox. But you can also do it through the lifestyle alongside that, like you mentioned, you know, mindfulness, stress management, and then investing in, you know, that, yeah, you know, whatever gives you the biggest bang for the buck. 

Nutrition, for some people. Nutrition doesn’t seem to be as big for me as like sleep and stress management and exercise. I recently added weight training to my toolbox. And it’s been having a really positive effect, actually. Not necessarily on the pain, but on the brain fog and fatigue; super interesting. And also, just seeing yourself as like a whole beautiful person worthy of love and self-compassion, you know, despite having this diagnosis or alongside it. So, I really, I definitely think it’s a helpful analogy. And I think your experience as a cancer, I don’t know, if you want to say a cancer patient, or your experience having the condition, your cancer has really given you a really unique perspective, I think.

Dr. Isabelle:  27:06

Yeah, yeah. No, absolutely. I think that I was open to it. And then, like, you know, just walking in the shoes, right? And then, continuing, I really liked what you’re saying, which is — and you know, it’s really interesting, we’re almost in metaphysical questions here. Who are the people, to come back to the difficult, like, the patients with difficult to treat RA. And so, you know, we had this debate on social media, which is not the best place to have a debate, anyway. But I felt judged by — not by you unnecessarily — but I felt judged by my community, like how come I am aiming for disease remission, why am I saying this to my patients? And I’m like, well, number one, because I know we can get there. And number two, why should I be afraid to say that I’m aiming for that? And it’s really interesting. Like, so, to go back to, there are some patients who are difficult, like, it’s difficult for them to achieve this disease remission. So, I try to aim, I aim for disease remission in all of my patients. And even for me, I want disease remission. And I think what’s really interesting is, and I have some examples, and we can go into the research if you want but I think that examples are stories and stories are so more impactful. And so, I’m going to share a story that I shared in my TEDx talk. Yeah. So, I call this patient Mike, but of course, it’s not his name. So, Mike came to me with more than 10 years of rheumatoid arthritis. Deformed. And he was in his late 30s, and he had had it since like late 20s. And he was severe RA, you know, high CCP positive, rheumatoid, like, you know, rheumatoid factor elevated, and then the erosion. Erosion of his joints on his hands, but as well as his hips, so he was wearing a cane. And I — 

Cheryl:  29:04

Sorry, I remember that a lot of people don’t know what an erosion is.

Dr. Isabelle:  29:08

Oh, yes, sorry. So, erosion is — thank you so much — erosion is when you start having your bone — so, basically, you have the cartilage on top of the bone, and then you start having the bone. So, the cartilage first is eroded, so basically less cartilage because of the inflammation that sort of eats it. And then, you can have a erosion when there is — I don’t like the word ‘eating’ but basically, there is so much inflammation of the joint that the cartilage is removed, or at least at another place, and then there is the bone that’s also eaten. Sorry, I hate that word.

Cheryl:  29:43

It almost looks like, when you look at X-rays, because I recently found this amazing radiology website from the Netherlands, by the way, that patients can look, anyone can look at it, and it had — it almost looks like little holes in the bone and you just were like —

Dr. Isabelle:  29:57

It’s like as if something is eaten. But I hate the word ‘eaten’ because it’s like as if something is in it. But there’s a lot of inflammation that it, yeah, that it looks eaten. That’s really how we call it.

Cheryl:  30:08

No, no. That’s a sign of more severe disease, when it gets to erosion.

Dr. Isabelle:  30:12

Absolutely. And that’s a sign, that’s actually what we want to prevent. And that is why we do this approach of, we don’t do this type of therapy approach, but rather we treat to target, drug to target, so that if you don’t respond to the first line, which is usually methotrexate, we put you on a biologic. So, fast forward for Mike. And so, Mike had been living in pain and anger, and anyone that has had pain for a long time. Look, I’ve had pain with the surgery, and oh, my gosh, I would just say, phew, like patients who have chronic pain, I had suddenly a whole lot more lot of compassion, because it’s really, it’s painful. There’s really a term for that, like, having chronic pain is probably worse than having just one time pain, like very intense pain. So, anyway.

Cheryl:  31:01

And you don’t have any hope of getting better at a certain point.

Dr. Isabelle:  31:04

Yeah, I know. 

Cheryl:  31:05

And you find more and more things. It’s like, well, where’s the data from you now? Oh, yeah. So, yeah.

Dr. Isabelle:  31:10

No, no, absolutely. That’s a really valid point. So, this patient, so Mike, had seen — I don’t want to, I want to say that he had seen 10 rheumatologists. Yeah, he had seen a lot of rheumatologists. And at the end, you could make out, I didn’t say that in the TEDx because you cannot, you don’t have that much time. But basically, I could feel by reading the notes that they had fully given up. They were like, whatever. He doesn’t do what we want him to do. So, we’re not even trying. And the person, like, he was travelling, you know, and so, yeah, of course, he couldn’t do all of the things that they were offering him. But also, like, did they really take the time to discuss —? But I’m telling you, like the last ones, you can you could make out that had given up, they were like, yeah, whatever, I’m not even trying. And so, I asked him, I was like, you know, like, because he was so angry looking at me and I was just like, uncomfortable. And at the same time, I was like, well, I’m uncomfortable because he’s probably super angry. And he’s super upset at rheumatologists. And yet, I’m here and I know I can get him better. Like, I knew I could get him better because I have amazing treatments. It’s not me. It’s not me. It’s never me. It’s the treatments and it’s the patient that does the work, like, it’s never, ever me. But when I say, “I know I can get you to remission,” it’s because I know my field that can get you a remission. And I know you can get into remission. And so, I told him, I said, look, I offered him a treatment but I went very fast about it. And I was like, “Honestly, have you ever thought about the fact that maybe this rheumatoid arthritis has brought you something good?” and you should have seen his look. It was like about to, like, if his eyes were guns it would have killed me on place, like, right there. Like, I could imagine like the fire taking me.

And so, I didn’t see him for three months, I didn’t know if I would ever see him. I had written him some treatments, a treatment plan and all this, and I was hoping that it would get it. But he did. And he came back. And he had no more pain, no more joint pain, no more morning stiffness. And he agreed to do a hip replacement and so on. And this is just like one of the most incredible examples, but I have so many of those. But because why is it so important to me is because he came back and he was like, “You know, I thought about what you said, and yes, this RA brought me so much good.” And he started like numerating all of the good things that is disease had brought him which he had not realized until that question, until that crazy rheumatologist question, right. And to me, you know, yeah, you could have said, “Oh, this is a difficult to treat patient.” I mean, he’s already seen 10 rheumatologists. Yet the first treatment I gave him, he went into full disease remission. I mean, the guy, I only saw once a year after that.

Cheryl:  34:01

That’s so weird. Why didn’t the other rheumatologist give him that treatment?

Dr. Isabelle:  34:06

They — I think, I think it’s him that would not take it. 

Cheryl:  34:11

Oh, okay. Sorry. Sorry.

Dr. Isabelle:  34:13

Exactly, right? So, it’s not like when we say difficult to treat treatment, like, he probably was a difficult — he was a difficult to treat treatment, or difficult to treat RA patient because he had tried other stuff. But was he really difficult? Or was it just that he never fully wanted to be in remission? And it’s almost, like, so this is a really — so this is, I told you, I’m metaphysical here.

Cheryl:  34:40

Would it be ‘want’ or would it be ‘believed’ it was possible? 

Dr. Isabelle:  34:43

I think both. I think, also, this idea of ‘Am I worth it?’ And do I, like, and so this is such a question that I asked anyone that I’m having an issue with, like, getting them into remission. And I’m telling you, I ask this question not that often, honestly, because my patients go into remission easily. But some of them, it’s hard. And some of them, it’s not that it’s hard, like, okay, you know, sometimes it’s like, their medication doesn’t work. Sometimes it’s that they don’t tolerate the medications, right. And that is just as annoying from both sides than like, it doesn’t work. And so, I ask them that same question. I’m like, have you ever thought of what this has brought to you? And it’s only the moment they are willing to accept that this has also brought them something — in my experience, at least — that I see some changes, right? And it’s like, wow. And so, it’s not every one, of course, nothing is one hundred percent. That’s the black and white that you’re not happy.

Cheryl:  35:50

Right, yeah. It would be boring if life was too black.

Dr. Isabelle:  35:51

Exactly. So, it’s never black and white. But it’s so fascinating. Like, do I deserve this? Like, do I — like, and, you know, what benefits did I get from having my rheumatoid arthritis? What is there any benefit of this? Like, I can tell you, my cancer, stage four, I mean, you know, it’s scary. I mean, I got so much out of it. I mean, I’m now here talking to you. I would never have talked to you before, because, you know, I mean, I would not have been in this podcast idea. I have, you know, opened my own direct care practice, because — and then, now, I’m loving even more being a physician. Like, there are so many good things that happened thanks to my cancer, that, you know, like, I want to say, like, okay, yeah, it changed my life, but for the better, not for the worst. And so, I’m not saying that everyone is going to have this relationship, but I really believe that there is at least something positive in everyone’s journey. And it might be, you know, maybe you get to realize that your husband, that you and your husband have a better relationship now or anything, right. So, sorry, I know, I went on this tangent, but it’s like, what is difficult to treat, rheumatoid arthritis? And sometimes, it’s like, do you think that you deserve remission is a really, really, really, really important question.

Cheryl:  37:18

I’ve seen that a lot in the support groups. I guess, I’ve seen a lot of people who truly do want to feel relief and truly want to feel better, and have, you know, they have ‘failed’, quote unquote, or the medicines have failed them, you know, they’re on their fifth one, they’re on their sixth one. And it’s really, really tough to maintain that sense of hope, when every single thing you’ve tried hasn’t worked. So, I’m just my heart goes out to the people who have that difficult to treat RA. And when we were talking about language earlier, I wanted to say, when when, you know, Dr. Amigues and I are saying ‘difficult to treat RA’, this is like a phrase in literature. Like, there’s an article I’m gonna put in the show notes that’s from 2022 called ‘Difficult to treat rheumatoid arthritis’ in quotes, ‘Current position and considerations for next steps’. So, this is not, she’s not saying that patients are difficult. But anyway, when we say, there’s always kind of phrases that can feel really weird to the patient or the also ‘failing’, you didn’t fail the medicine, the medicines failed, you know. So, knowing these phrases, it’s just how —

Dr. Isabelle:  38:21

I hate those words. Yeah, it’s, yeah, thank you so much for clarifying that. Yeah. It’s not a patient that’s difficult. It’s never, ever a patient that’s difficult. I think, you know, from a rheumatoid arthritis standpoint, it’s just that it’s actually fairly easy, usually. Like, right, methotrexate doesn’t work; biologic. And honestly, I usually share, I did a diagram and like a whole explanation of how, like, what you can expect with rheumatoid arthritis. And I’m showing this because I tell my patients at three months, if it doesn’t work, with switch. At three months, if it doesn’t work, we switch because our goal is full remission, our goal is full remission. So, that’s, yeah. And then, what was the other word that you said, the failing? Oh, yeah, I hate that word, ‘failing’. Yeah, we didn’t reach remission. That’s the word that we should use.

Cheryl:  39:11

I like that one, too, we didn’t reach remission. My friend, Gittel, who’s been on the podcast before, she just says, “The drug failed me,” you know.

Dr. Isabelle:  39:18

Oh, for sure.

Cheryl:  39:19

For whatever reason, it didn’t, you know, in your body. And, you know, I think the fact that if I’m zooming out to the 20,000-foot view here, you know, you really have slowed down and looked at your patients as a real human being sitting in front of you. And that’s honestly like the most — sometimes it’s the most therapeutic thing. I can usually tell within like three minutes of a clinical encounter when I’m the patient with a new provider, whether they’re really, whether they’re on autopilot, whether they’re really taking a moment to see me. And I think there’s something in occupational therapy and in psychology, they call it the ‘therapeutic use of self’, if you’ve ever heard that. But yeah, it’s like, the value of being seen by someone and validated. Like, when you look at somebody who’s had these treatments that haven’t worked for them, and you say, you know, “I still want to help you aim for remission,” it’s a beautiful thing. And I want to ask you, selfishly, I want to ask you a question for me, because I do think, I wonder, or I’m curious, is remission — do you — you said that you aim for remission in all of your patients that for sure have RA. Once you kind of are getting, do you ever get to the point where you’ve gone — you’ve exhausted all the treatments?


Dr. Isabelle:  40:40

Never.

Cheryl:  40:41

I’m on the fifth biologic, and I’m worried about running the clock out.

Dr. Isabelle:  40:45

There are so many of them. Don’t even worry about that. 


Cheryl:  40:47

Okay. Okay. 

Dr. Isabelle:  40:48

Don’t even worry about that. In other diseases, there are some other diseases where there’s not that many options. But when it comes to RA, we have so many options, and they keep coming back. Like, we keep having new ones. 

Cheryl:  41:01

Well, it’s true. There were only three when I started out, three biologics. So, it’s just a classic rotation. And then now there’s —

Dr. Isabelle:  41:09

I want to share this because I want you guys to realize this. I take the example of rheumatoid arthritis for my own cancer journey. Because, like, I got diagnosed with stage four, and it’s HER2-positive breast cancer. It was, sorry, I’m gonna put it in the past because words matter. It was HER2-positive breast cancer. And HER2 is this receptor. And so, the same way that, you know, rheumatoid arthritis may have this positive CCP, like, it’s kind of like the same concept. And so, I had a biologic, and I still take biologics every three weeks. I mean, it’s really, I’m a really expensive patient. Because I’m worth it, you know? 

Cheryl:  41:48

Oh, me too.

Dr. Isabelle:  41:39

Exactly.

Cheryl:  41:50

They’re both really expensive, cancer and RA. 

Dr. Isabelle:  41:51

We’re still worth it. We’re so worth it. But it’s really interesting. So, when I go for my PET scan, and because I need to do PET scan every six months to make sure that this thing doesn’t come back, right, I always, to reassure myself — like literally, this is what I do, to reassure myself, I’m thinking, “What do I tell my patients with RA?” And I always think, well, this was the first line, I got into remission with the first line. But even if it were to ever come back, there are many other options. And so, that is literally what I tell my patients and that reassures me as a patient with a history of cancer. And so, if that can reassure me as a history — as a patient with a history of cancer, I want to make really sure that you can all be reassured by the fact that, like, we have unbelievable treatment in rheumatoid arthritis. It’s so cool, right? Like, I I used, when I started rheumatology, we were starting to use TNF inhibitor, right, like, it was Remicade. 


Cheryl:  42:53

That was the first biologic.

Dr. Isabelle:  42:55

Uh-huh. Exactly, the first biologic that we — I mean, in rheumatology, because there were other biologics. But it’s like, I mean, the change of, like, in my lifetime, I’m not that old, guys. I’m not that old. And like, seeing that difference. I mean, when we say we aim for remission, we really mean it. It’s not the same thing than just aiming for minimal disease activity, or for moderate disease activity. And so, yeah, I mean, I believe in what I say, because that’s really what we aim. You can ask all of my patients, they all, I aim for remission in all of them. And I mean, that doesn’t mean that you’re not going to flare, that doesn’t mean that you’re going to be in remission forever, but that we’re still aiming for that goal, with the idea that hopefully, it’s going to last forever. Forever, right. And I feel that that’s what’s really important is to realize that we are changing, our bodies are changing, our hormones are changing when we are women, and the environment stuff are changing, right? And so, we — it’s not just, you know, black and white. And it’s just like you go through a journey, and your rheumatologist is on your side to get you to full remission all of the time.

Cheryl:  44:17

Yeah, I, honestly, how you explained it to me, it’s exactly how my rheumatologist did in 2003. And I was kind of shocked the first time after six years, then, what my body — you know, I think the theory is that my body created antibodies to the medicine because I started, I had my first post-diagnosis flare up, and I was like, completely shocked because I was like, no, this is the plan. I thought it was kind of like diabetes, where like, there’s the one thing, like, there’s insulin for diabetes. Like, there’s the thing, I take this TNF inhibitor, I’m gonna take it forever. And so, you know, it’s a helpful lesson to learn that, you know, it’s, like you said, it is a journey and even if the goal is remission, the strategy to achieve the goal might have to change to say, you know, this medicine, your body is not responding in the same way as before, let’s switch you. Like, that was actually — this is going on another topic — but in terms of coping and mental health and acceptance, that was actually significantly harder for me to cope with than the initial diagnosis. Because the initial diagnosis, I felt so much relief because I had been medically gaslighted; that’s a whole other story. But I felt like, oh, okay, this is what I do. Like, there’s a diagnosis, there’s a treatment plan, they believe me, all good. And then, when I had my first flare, that it was like that moment of truth of like, oh, this isn’t just one mountain I’m going to climb and get back down, it’s going to be a series. And that is kind of a metaphor for life, right? Every time you think, “Oh, it’s just, I just do this,” it’s like, you know, it’s like, figured it out, then they change.

Dr. Isabelle:  45:50

And I think it’s, I hear you, I really do hear you when you’re like, you’ve done so well, and then suddenly you’re like, wait, what, what? Like, where’s my truth? Like, I’ve come up with this idea that I’m good with RA and wait, what? Like, it’s not working anymore? So, I’m with you. I think that as a rheumatologist, I see so many good drugs that I’m like, yeah, no, I got — so maybe, that’s like a really is something that I’ve learned because I was like, I’ve got you, like, it’s okay. Don’t worry. Like, we have the next one. Exactly. But hold on, this one was working, why is it not working anymore?

Cheryl:  46:24

Yeah. My rheumatologist, she’s really shy so she doesn’t want to come on the podcast, which I totally understand. It’ll also put her in an awkward position. But she says that — I don’t know if you’ll relate to this, I thought it was really cute. Because I told her maybe one day, I could go back on that first TNF inhibitor. And she goes, “A lot of people, that first drug that put them into remission, it’s like your first love or like your first boyfriend, where you’re like, oh,” you know, like, she said that you kind of romanticize it and in a way and that, you know, there are possibilities of going back on one, but we kind of want to go to the different classes. 

Dr. Isabelle:  46:59

Yeah, exactly. Yeah, exactly. So, that’s the beauty, right? Like, in the TNF inhibitor, there’s like, what, five of them. And then, now, there’s the biosimilars, and then you have all of the combination with the conventional drug? I mean, yeah, I mean, there is a reason I easily say we aim for this information, because, I mean, it’s not like we only have one or two drugs.

Cheryl:  47:23

One more thing, before we go to the rapid-fire questions, and I’m just, I’m so grateful for you for spending this time. Because this is really, this is an area of real confusion for people. I do know that, like, I’ve talked a lot in the Rheum to THRIVE, you know, self-management support group about, like, choosing where to put our energy, like how much energy to put into making things, quote unquote, ‘better’, you know, making my pain level levels, better fatigue better, and then how much energy to put into adjusting and adapting, to maybe this is as good as it gets for today. Today, this is as good as my pain is gonna get, can I adapt to that? Can I still find ways to do those meaningful activities? But, sorry, that was a little tangent. But the question I was also thinking about before that was, something I think is confusing to people, is where do I — if let’s say their doctor had told them, or they had the impression that maybe remission isn’t really achievable for them, what would you say would be like, you mentioned kind of like a decision hierarchy, like you start with the medications, where do the lifestyle things fall in with that, like, alongside? Okay, so what are some of the more helpful things?

Dr. Isabelle:  48:44

And I, you know, because I don’t want to finish before explaining one more thing. So, I’m gonna go back into disease remission. No, I just realized, I was like, oh, I really want to make sure that everyone gets that. When you have a, quote unquote, unquote, so-called this ‘difficult to treat RA’, there is one thing that I would recommend, is to make sure that it is indeed RA. That’s like a really important one. And why? Because not all drugs for RA work for the other conditions. So, the truth, the truth is that insurance are a problem in this country. And that to get medications, if you say that someone has RA, they get a lot more access to a lot more medications, okay. So, rheumatologists have a tendency to say RA to a lot more things that are actually not necessarily RA, and the problem is that — sorry, I’m laughing — you may see one rheumatologist, and then you may see another one, and then you may see another one, maybe you see a nurse practitioner or PA, and that diagnosis of RA that has been written just to get some potential treatment gets carried away without being thoughtfully thought, like, is this really RA? They reason I say this is —

Cheryl:  49:56

Totally. Yeah, sorry. I’ve seen that in some of them in the group, and they’ll say, “My doctor outright told me, we’re not sure it’s RA, but we’re going to say it’s RA so you can get the medicine.”

Dr. Isabelle:  50:04

Absolutely. And so, if the doc has time to explain this, that’s correct. Sometimes they don’t, right. And I’ve seen — or sometimes you do not know. And so, you just, like, I have said, I’ve said to patients, like, “Look, I’m not completely sure, but this is clearly inflammatory. If I say this is RA, you’ll have access to more drugs.” So, bam, we’re saying RA. But I’ve seen rheumatoid arthritis, not being rheumatoid arthritis, but being gout or pseudogout. It’s super common to be pseudogout. I’ve seen it to be psoriatic arthritis with folks I assess. And so, one of the reasons why rheumatologists love their specialty is that it is not black and white. And we are the detective. But it’s really interesting, right. I can give you how much whatever TNF inhibitor I want, you will not respond if you have gout. Like, I mean, you shouldn’t really respond that much if you have gout. You may respond if I give you Anakinra, which works both for RA and gout. But you see, like, all of those things, I think that that’s really important. For PMR, same thing. It doesn’t work with TNF inhibitor, but supporting polymyalgia rheumatic, that, like it would like, you know, Tocilizumab would work. And so, then maybe someone would say, “Oh, you have RA just because prednisone and Tocilizumab works, because that works for PMR.” 

So, all of this is to say that I think that if you have a, you know, a difficult to treat RA, we have to also make sure that we pause enough and we look Is there any other thing going on. First of all, is my diagnosis correct? Second of all, is there anything else going on as well like fibromyalgia which is like small fiber neuropathy in most of the case, so anyone that gaslights you with fibromyalgia, just tell them to learn about small fiber neuropathy. And, you know, all of those things, and I think that that’s really important. Depression and so on, and vitamin D deficiency, and all of those things. And I think that that’s really important, like, did someone actually do an MRI or an ultrasound to see if your RA is really active? So, I just wanted to put that point, which is that we need to make sure that we know what we’re talking about when we’re saying that the disease is not in remission, because you may still have joint pain, if it’s not RA but osteoarthritis, you may still have joint pain or muscle pain if you have fibromyalgia, you may still have fatigue, and you may still have, you know, so many other options. So, I just wanted to share this because that’s important. Now, for the lifestyle question, one hundred percent I add them at the same time. Like, I mean — 

Cheryl:  52:41

Why not? [Laughs] 


Dr. Isabelle:  52:42

Exactly. And I think for me, like, again, as a, you know, a patient, I mean, lifestyle changes are literally in your power. They are a way to empower our patients from the moment that they have a symptom. And so, you don’t have to wait for your rheumatologist, you don’t have to wait for your bloodwork, you don’t have to wait for the X-ray, you don’t have to wait for anything and do all of those techniques that are clearly proven scientifically to work. You mentioned exercise for fatigue, I mean, it’s proven in cancer. That’s like the only thing that helps with patients undergoing chemo and being tired. It’s exercise. It’s crazy telling patients, “Exercise!”

Cheryl:  53:24

And it also really, really helps with sleep quality. I was thinking about doing a little post that was like, you know, five reasons to exercise with rheumatoid arthritis that have nothing to do with muscles and joints. Like, not even just that, its emotions, you know, your endorphins that get released. It’s the fatigue, it’s the improved fatigue, improved sleep quality, and obviously improved pain levels. So, yeah, exercise. And I do think that lifestyle’s in our control to a certain degree. I mean, obviously, for some people, there’re going to be barriers in terms of, you know, let’s say you’re a mom to like three small kids, or financial barriers. I think that’s one of my pet peeves in the nutrition space. When people are like, it’s totally in your control to eat, like, a holy, organic, like perfect diet. It’s like, okay, but it’s not in a lot of people’s control to maximize every single — to get to get therapy every week and meditate every day and exercise every day, you know, you might have to pick and choose, experiment, you know, as I’m sure you know, with what gives you the bang for your buck, you know?

Dr. Isabelle:  54:31

That’s exactly right. And I think whatever works for you, and the thing that I always tell my patient is that if you’re going to be frustrated about any of those, it actually defeats the purpose because the frustration is going to cause inflammation. So, don’t be frustrated. And in terms of exercise, ‘movement’ is a better word, because it doesn’t actually have to be exercise where you sweat. It can just literally be movement, which is just walking.


Cheryl:  54:56

Or dancing! 

Dr. Isabelle:  54:57

Or dancing. Oh, I love that. Yeah, dancing. 

Cheryl:  55:00

We were talking about Twitter earlier. I once saw a doctor on Twitter that was berating their patient because he said, they asked about the exercise. And they said that they walked the dog for 40 minutes every day. And they were like saying that that’s not real exercise. 

Dr. Isabelle:  55:14

That is. 

Cheryl:  55:15

I know! I was like, excuse me? I get it that like, I will say, for RA, I do think of like the three pillars as strength training, cardiovascular, and stretching. So, if you’re only getting cardio and not strength training, you’re missing a little bit because you do want to challenge your muscles, not just your heart, and vice versa. If you’re only doing strength training, and not, you know, getting your heart rate up, it’s not quite as good for the cardiovascular effects. So, having a little bit of both is helpful. But yeah, I think, I just — I know it’s kind of a leading question to say like, do you do the lifestyle alongside the medicines, but it’s so often posed to patients as an either/or, instead of a both/and, you know?

Dr. Isabelle:  55:59

Both/and. Exactly. I love it. Like, why deprive yourself of a technique that’s gonna work and that, you know, doesn’t really cost much. So, yeah, I’m with you.

Cheryl:  56:09

And I’m glad you mentioned that because I have no negative association with the term exercise just because of my background as an athlete. I know a lot of people get intimidated by the word exercise. So, I remember, I heard that from a physical therapist to always say like ‘movement opportunities’, or they even recommended, like ‘movement snacks’, which I thought was cute. So, like throughout the day, not thinking about it as like going to the gym for like an hour, but thinking, okay, if I’m going, you know, can I go up and down the stairs, on my way to a meeting for five minutes, you know, just to kind of boost, get some more activity in. And that’s so helpful. I mean, I feel like we could talk forever, we might have to do a Part Two because I think remission is such a fascinating and complex topic and just the topic you introduced of like maybe your diagnosis is not accurate. And I don’t want people to freak out about that. But I do think it’s important to recognize that it is common, or it is not a freak occurrence for diagnoses to change in rheumatology because so much is grey areas, like you mentioned. So, I’m putting — you nicely sent me a couple of links, one of them’s called, like, from a journal article from 2021 that says ‘Is seronegative RA true rheumatoid arthritis? A nationwide cohort study’ so people can learn more. Because it is, you know, I once had someone in the support group who got their diagnosis changed from rheumatoid arthritis to psoriatic arthritis. And they were initially emotionally coping with that, and it was kind of a funny, like, the devil you know, right? When you first get diagnosed with RA, she’s like, “I don’t want this.” And then, now she had RA, she’s like, well, wait a minute, I was just getting used to that, now I have a new one! But I remember telling her, you know, it’s really, really important to have to know what your condition is because this is going to open you up to the right treatment. You want to match the right treatment to the right disease. So, hopefully, if you’re — and that’s why I think second opinions are always a good idea if you’re feeling like there’s something missing from your current, you know, plan. So, a couple of rapid-fire questions that knowing you and I would probably talk about each of these for an hour, but because we are so passionate, but what is what is some of your best advice for newly diagnosed patients?

Dr. Isabelle:  58:20

To find the best rheumatologist for them, because it’s going to probably be a lifelong relationship. So, find the best rheumatologist and make sure that you trust them. Yeah, that would be like the number one. Number two is to realize that it’s okay. Like, rheumatology is a really cool field where it doesn’t have to be sad. It’s a happy field.

Cheryl:  58:41

Yeah. Oh, that’s a great one. That there is, you know, there is hope that this.

Dr. Isabelle:  55:45

A lot.

Cheryl:  55:47

Yeah, of course. Yeah. And what is something, it doesn’t have to be clinically, like what is something that’s been just bringing you joy lately?

Dr. Isabelle:  58:56

Oh, so much stuff. Sorry. I mean, I would say that one of the reasons I love being a rheumatologist is to see my patients in remission. There is like a huge rush of dopamine when it comes to that. So, that has been wonderful. That is wonderful. And it’s ongoing. What has brought me joy, seeing my kids play the piano. I felt that I had given up on them. And then, the other day, they were like, my son was like playing with two hands. And I was like, wait, he’s actually learned something. And it didn’t seem like it was learning anything. So, I was like, wow, okay, cool. 

Cheryl:  59:33

Oh, how old are they?

Dr. Isabelle:  59:35

They are twins and I have — almost eight, they are seven. 

Cheryl:  59:39

Oh, okay. That’s so, yeah, Charlie, my nine-year-old, has been doing piano too. And it’s wonderful, yeah, when they have that. And I think piano is a great frustration tolerance activity because you have to experience your mistakes, you know, and so, yeah, that’s beautiful. And then, last rapid-fire question — again, long question potentially — but what does it mean for you to — what does the concept mean to you to thrive with rheumatic disease or rheumatoid arthritis?

Dr. Isabelle:  1:00:14

I think it’s if you’re not letting it define you. I think it’s a component of you, but it doesn’t have to define you. It’s not because you have RA that you are RA, right. Like, it’s not because you have pain that you are pain. And so, I think thrive is just living, living your life to the fullest. Living your life without worries, because — and I’m going back to because I’m a rheumatologist and that’s what I tell my patients — I want to worry for my patients so that they don’t have to worry, so that they can live a full, normal and full life — than normal, you know, sorry, we defined that. 

Cheryl:  1:00:52

Oh, no, no, no. It’s okay. It’s totally one of my little —

Dr. Isabelle:  1:00:55

Like, their life, I want them to live their life. I want them to be able to play with their grandkids, I want them to be able to crochet. And I had this patient who sends me a hat that he had knitted. And it’s kind of funny that it was a man, but he couldn’t do anything, and then suddenly is able to knit and like he’s so grateful. And I got a hat in the process. Yay!

Cheryl:  1:01:20

Oh, there’s so many artistic people with rheumatoid arthritis. It’s really, I mean, I’m blown away a lot. And that’s one of the things that people grieve when their disease isn’t well controlled, is I can’t do these activities that you still want to do or love doing, like watercolor painting, or, you know, or crocheting, knitting cross stitch, just so many, you know, talents.

Dr. Isabelle:  1:01:43

And I will say it again, I’m gonna, this is like a hill I’m willing to die on, we can get you to remission because it’s true, because it is true. You should not have to give up crochet, you should not have to give up painting. Like, we are not RA. Yeah, and even if it’s another rheumatologic disorder, like we just have to find what it is. And then, we treat it. Like, there’s a reason I did rheumatology twice. Guys, I love it. Because we get our patients into, like, ability to do everything they love. I’m not saying the 90-year-old, I think, I did put an 88-year-old recently on a biologic, but because I was like, well, you know, you cannot do what you like. So, what’s the point? So, do you want to just try? Like, let’s just try. And it’s not because I’m trying that we cannot back it off, we can always back it off. 

Cheryl:  1:02:35

Right. 

Dr. Isabelle:  1:02:35

But yeah, there are some patients, you know.

Cheryl:  1:02:38

I think there are, yeah, and I think, again, it’s still a balancing act in the meanwhile, while you’re waiting to get to that point, you know, or if for whatever reason, maybe it’s because it’s, you know, you have a deformity or you have another condition like a musculoskeletal condition that’s making it difficult for you to do things like let’s say, there’s someone in the support group recently, who was really into rock climbing, like, there might be a point where you’re not gonna be able to climb the things that you used to be able to climb, but can you increase your ability to enjoy the activity in an adaptive — and this is me being an OT — but an adapted or modified way, or find a substitute activity that kind of scratches that same itch, because then that way, your life enjoyment isn’t dependent on full remission. So, it’s how you can get at it from two different, you know, different angles, and just put all the possible tools in your toolbox.

Dr. Isabelle:  1:03:33

Yeah, it’s really interesting, because and I think the difference is that you’re an OT, so you don’t actually offer the treatment. But like, I’m a rock climber. If you remove rock climbing from my life, I will be so miserable, I would be so sad. It will be very said.

Cheryl:  1:03:49

I don’t know, if you got a spinal cord injury or something, you know, like —

Dr. Isabelle:  1:03:52

I know, I know. And you’re right. And you’re right. And I love that you’re sharing this, and that’s why I love occupational therapists.

Cheryl:  1:03:59

I was trying to be creative, but.

Dr. Isabelle:  1:04:03

I know. I love it. I love it. Yet, I would say that. It’s really cool to do this. And there’s a reason why rheumatologists are rheumatologists and we have a lot of options. And I would not give up. Like, I would say don’t give up. I would still say, yeah, we’re gonna get you to climb. This is not a spinal cord injury.

Cheryl:  1:04:25

Oh, no, no, I just think a lot of the people in the support group have like multiple comorbidities. It might be that RA is not their only barrier. Other conditions, you know, couldn’t but, you know, so that’s like stage two thriving, is like being able to thrive when you’re not able to fix the underlying problem. Can you still, you know, you still have a life, you’re not in a coma. So, that’s why I kind of like give myself that pep talk sometimes, you know, because I had some acute injuries on top of my RA that really interfere with quality of life. I reaggravated my neck after a car accident injury. I sometimes re-tweak it and just takes a day or two to get settled back down. But, you know, there those kinds of things pop up, you know, that are not, they don’t have like a fix.

Dr. Isabelle:  1:05:19

It’s a really powerful thing to just say, hey, you know, yes, I’m aiming to be better, yet I also need to listen to my body and I’m going to work with it. And right now, my neck is turned like whatever, or my joints are painful and swollen. So, yeah, of course, I should not rock climb on a painful and swollen joint because I’m gonna aggravate it. So, I think that there’s this fine balance of you can have your rheumatologist aim for perfection for you, and also, you listen to your body and adjust to what you can do. I think that there is this fine balance in between.

Cheryl:  1:05:54

Yeah, yeah. A hundred percent. There’s an analogy of that is, for me, or the thing that that this is a whole other topic, but the Acceptance and Commitment Therapy was really helpful for me because it, it’s like, okay, life is like Whack-a-Mole. Challenges are gonna come up. Maybe I whacked the mole — if you know that game from France — but, you know, it’s like game where there’s little moles that come up, and you have a mallet, and you hit them. So, they come up one at a time, boop, boop, you know, you hit it. But life, there’s never going to be a, or at least for most people, I think the human condition is that we are going to have to approach suffering at some point, with psychological suffering, the death of a parent, like things are just normal part of life that are difficult for us to cope with. And building our capacity to cope is a good thing, whether or not you end up whacking that mole of rheumatoid arthritis, you’re still going to have to build the skills to cope with, you know, other kinds of, like, for me, one of the moles, like little animal guys that came up, was the car accident. So, the skills I had built as a chronic illness patient actually helped me cope with that, probably for you the same way that the skills you built as a cancer patient is, you know, are helpful, too. So, that’s kind of why I try to take different sides. But of course, I’m always like, I am the biggest — I feel like people I’ve actually gotten comments and where people think that I’m getting paid by pharmaceutical companies to talk about how effective the medicines are. I try to be as clear, I’m an occupational therapist, I’m not a doctor, but I’m an RA patient who’s taken these meds and these meds, you know, the prognosis for me without these meds would be that I wouldn’t be able to be, you know, swing dancing at my wedding, I wouldn’t have been able to be, you know, still able to coach my son’s soccer team and do things like, you know, I’m never — I’m always kind of trying to tackle misinformation online or the medication fear and medication shaming that occurs with that.

Dr. Isabelle:  1:07:51

Yeah, yeah. And you’re in that space. And yeah, and I would love to talk about that, actually. Yeah.

Cheryl:  1:07:58

Oh, yeah. Well, okay, so I’m putting all these links in the show notes. But can you just let the audience know where to find you online?

Dr. Isabelle:  1:08:07

Yes, absolutely. So, the practice that I have, and that’s also like a movement, is called UnabridgedMD. So, it’s ‘unabridged’ for the non-edited version of the patient and the non-edited version of the physician. So, UnabridgedMD. And I do have the podcast UnabridgedMD where I talk all about health. And then, I created a YouTube video called, a channel called Rheumatology 101 where I talk — I just love rheumatology, so I was missing educating my students and fellows, and so I’m like I’m gonna do a YouTube video sharing. So, Rheumatology 101 by Dr. Isabelle Amigues. And then, UnabridgedMD, and I have like Instagram, that’s actually how we met, right. Instagram, Twitter, and LinkedIn, and all of the usual platforms. I think there’s also TikTok, but I’m not really on there.

Cheryl:  1:08:56

I’m on there, it’s so fun. There’s a lot of patient education on there. But no, but I just subscribed to your podcast. I mean, not your podcast, your YouTube channel, as we’re talking. So, I love that Rheumatology 101, it’s so needed, you know. There’s so much confusion out there, even though there aren’t some great websites, people still seem to get really confused. So, I’m really excited that we got to talk today. So, I know people will follow up with you. If you’re lucky enough to live in Colorado, maybe they could, you know, see you because, you know, people are always asking me for recommendations for rheumatologists. And it’s hard because I’m in Seattle, you know, so I know the ones around here and I’ve met some at the conferences. But, you know, it’s just it’s nice to have that personal touch. So, thank you so much. And I — oh, and your TED talk, is your TED Talk available?

Dr. Isabelle:  1:09:44

Not yet because I just gave it. Yeah, it’s ‘Changing the relationship to our health experience’. I don’t know if I’m going to change the title but I think it’s coming like in four to six months. So, we have time.

Cheryl:  1:09:54

Oh, okay. So, I was gonna say I put that as a placeholder. So, I will say to link when available, the TED talk. And I love that you have his tagline I’ve seen you use, like, ‘Remission is my mission’. I love it. I think that’s really cute. Sorry. So, I appreciate your take on remission and it definitely gives people a lot of hope. So, we’ll sign off for now, but maybe we’ll do a Part Two later. 

Dr. Isabelle:  1:10:21

Thanks so much. Bye!

Cheryl:  1:10:22

Bye!