Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Shilpa Venkatachalam  00:11

Welcome to Relatable Rheumatology from Stories to Studies. A podcast where we explore the personal experiences of people living through somatic diseases, and the latest research evidence. Each episode invites a patient to share a question or concern that they’ve encountered during their complex diagnosis and treatment journey to be addressed by our experts. We aim to bridge the gap between patient experience, research and clinical practice by providing relevant and relatable information. This podcast is a co-production with HCP Life. I’m your host, Dr. Shilpa Venkatachalam, and Director of Research Operations and Ethical Oversight of Patient-Centered Research at the Global Healthy Living Foundation. In today’s episode, we will be exploring the topic of chronic pain: what the latest understanding around it reveals and how it can be managed using a multi-pronged approach. We will also address some misgivings about it and broach some topics that are often difficult to talk about. As someone who lives with chronic pain myself from rheumatoid arthritis, I’m keen myself to learn more about this topic from our guests today. Joining us in this conversation are Dr. Beth Darnall, professor of anesthesiology, perioperative and pain medicine at Stanford University’s School of Medicine, where she directs the Stanford Pain Relief Innovations lab. Her work involves developing and investigating novel pain treatments that are scalable, effective and low burden. She leads multiple pain treatment trials that are active nationally, very warm welcome to her. I’m also joined by Tien Sydnor-Campbell, who is a medically retired, body centered psychotherapist and former body worker with 25 years of clinical experience. A specialist in the recognition that the body and mind are not separate in healthcare, Tien’s role has been to empower clients in managing SomatoEmotional imbalances. She was diagnosed herself with autoimmune rheumatoid arthritis in 2010. And as a lifelong volunteer and advocate evidence through her efforts to educate the public about the unique stigmas and difficulties that black, indigenous people of color face in healthcare. So join us in today’s episode of relatable rheumatology, from stories to studies, as we navigate a very big, complicated and interesting topic as best as we can in under an hour: chronic pain. So why don’t we start with you Tien. You know, pain is something we all experience from time to time. We get injured, we get a headache, we get a tooth extracted or backache every now and then. And in these cases, and often in others, pain is useful. It can be informative. It tells us to take our hand away, for example, from a burning stove, or that we’ve enjoyed ourselves and we need some rest. However, when pain becomes chronic, it causes major distress and truly disrupts one’s life. Can you maybe tell us a little bit about yourself, who you are, what you do, and your diagnosis? And also how you came to realize that pain would unfortunately be part of your everyday life.

Tien Sydnor-Campbell  03:40

So it’s really an interesting story. And you know some of it because I started my journey as an athlete. I was a competitive swimmer. I was a person that used to bike to work 26 miles round trip. I worked at a YMCA so that I could swim and bike and exercise. I was very athletic, all the way up through and until my diagnosis. Now, notwithstanding, throughout that whole time, I also had osteoarthritis, so swimming and biking were the ways that I could exercise so that I could, you know, stay in shape, feel good. And I always listened to my body when it’s like okay, no, you need to ice your knees or whatever. I was a specialist in SomatoEmotional release as a massage therapist because when I was in school, I was the student therapist that would have clients who had emotional releases on the table. And so that became a specialty of mine from the time that I was in, in school. Fast forward, because chronic pain was always something that I dealt with as a massage therapist, I had all kinds of tips and tricks and ways to deal with chronic pain issues—ways to help people to get in touch with the things that we’re still stuck in the stoma. Because everything that happens to you has a cellular memory. It’s imprinted, right? If you have a way to try and work that out through all the different methods, you know, whether It’s massage, chiropractic, acupuncture, meditation, Tai Chi, Yoga, stretching, journaling, like whatever you can do to help move the material so that it feels healed and you can continue to do the things that you want to do and get through your life, it’s great. When I got the diagnosis, I had just finished a triathlon. A month later, I literally could not stand up straight, couldn’t open a bottle of water, could not drive my stick shift vehicle. It was a nightmare. And it was a very different kind of pain, not only because it was extremely painful but that it was unrelenting. There was nothing in my toolbox that I could use to get through it without some additional help. Get into medicine, start seeing a rheumatologist, start taking medications, we start, you know, reversing some of the effects because my numbers were sky high from the first diagnosis. I was very lucky in that I didn’t have to go years without a diagnosis, but it took a long time and a lot of trial and error and a lot of emotional ups and downs dealing with it. Because even as an athlete, you know, there was always a kind of no pain, no gain, like, “It’s gonna be painful for a while, you just got to keep going.” But when it came to this kind of chronic pain, I couldn’t even—there were days where I couldn’t even lift a five pound weight and it literally brought me to tears because I’m like, if I can’t lift this, then what can I lift. And I literally have a three and a half pound limit on my hands and wrists right now because both of them need reconstruction. So you stop being able to hold things like purses, or carrying things when you’re holding it and you have to use your wrist. There are adjustments that have to be made physically, and mentally, and emotionally. And I think the biggest difference when you have chronic pain is the ways that we can address it. Even through meditation, and hypnosis, and medications, that there are still breakthroughs, and you still have to deal with it. And biggest difference is how you deal with it.

Dr. Shilpa Venkatachalam  07:33

You know, as you were speaking, I was just thinking, how terrible and how difficult it must have been for you to make these adjustments and even to just accept pain as part of your everyday. I would be remiss if I did not ask you as a person of color, as a black woman, was your pain taken seriously? Did it take you substantially long to get your pain addressed? How was that journey?

Tien Sydnor-Campbell  08:01

So there’s two things with this. So my osteoarthritis pain I had been dealing with and complaining with my doctor about for 20 years. And I knew I needed knee replacements before RA got diagnosed, but they wouldn’t give it to me because they said you’re too young, right? So you’re in pain, but there’s nothing we can do because you’re too young. I didn’t feel like my pain was addressed then. so I just addressed it myself and just dealt with it. But when I got rheumatoid arthritis, it took a very long time, lots of medications, lots of medications that I had to burn through, in order to get the kind of treatment that I’m on now, which I think we’re going to discuss a little bit later. But it took probably three years for the chronic pain itself to be addressed outside of the issue of rheumatoid activity in my joints. So some of the joints were completely deteriorated, and I’ve been bone on bone for decades.

Dr. Shilpa Venkatachalam  09:06

Thanks, Tien. That was, that was really moving. You know, you touched upon several different things here and I want to come to Dr. Darnall. You know, chronic pain is such a big topic here. So I wanted to ask you: from Tien we understand that chronic pain affects our lives inside out obviously. It’s not just a physiological experience. There’s a very sensory aspect to it as well. We use different kinds of languages around pain. Pain can be throbbing, burning, nagging, sharp, dull, and even experienced a stiffness by many of us living with inflammatory forms of arthritis. And I know that the language that we use can tell us a lot about the types of pain that we’re experiencing. Dr. Darnall, can you provide us with a brief overview of what the latest understandings around chronic pain are?

Dr. Beth Darnall  10:00

Yeah sure, I’d be happy to. And thank you Tien for sharing your story is very powerful in moving. You know, when we think about pain, it’s, It’s both that noxious sensory and emotional experience. So, I think, you know, one of the things that I love about the definition of pain is that it, it has that personal element to it, of how the pain is impacting us, how It’s influencing our lives, our emotions, and that’s so personal, of course. One of the biggest pieces of that for me is this idea that we’ve been treating pain pretty compartmentalized and often reductively and neglecting the whole person. And so when we bring in a whole person approach to treating pain, then we have best chances of helping each individual gain relief and also in addressing various aspects of pain that are unique to the individual. So there have been in recent years, a very big push towards whole person assessment, whole person treatments. So we’re not just focusing on pain as a biomedical problem. And also on the flip side, that we never want to focus on pain as a psychological problem in isolation. So we want to assess it from this whole person perspective, recognizing that there are these very complex debilitating medical diagnoses disease processes at play, assessing all of that, and attending to the impacts of the pain and what the individual person can do to address some of those factors so that they’re able to live as best as possible with these complex circumstances, with these complex diagnoses, and with all ultimately what’s often a lot of losses. And, of course, there’s emotional reactions and responses to that and they merit our attention and they merit our, you know, really addressing those factors. That’s what I think of as the whole person approach. And, look, I’m biased. This is my perspective about pain, and if you interview someone else, you’re gonna get a different perspective. But to me, this is the most exciting development, that we’re we’re moving more towards this clear understanding that an integrated approach is needed.

Dr. Shilpa Venkatachalam  12:44

Fantastic, such a big topic, and you did such a good job of just condensing that. There’s a lot of misgivings around how we understand chronic pain today. And especially when we’re talking about this whole person centered care, which involves both the mental, emotional aspects as well as the bodily, physiological aspects. Dr. Darnall, we often hear about even things like changing thresholds of pain. And there’s a lot of misgivings around that. It’s as if, you know, there are often times where people feel—patients feel like they’re being told that they can control how much pain they’re feeling, which obviously has to be sort of looked at very carefully. So can you talk a little bit to us about hyperalgesia and central sensitization, and how that sort of ties into both the sensory as well as this—I suppose, how it ties into bringing both the mind and the body together.

Dr. Beth Darnall  13:45

Yeah, now this is a broad area, and so I’m going to come at this and I just, you know, want to be really honest in declaring I’m not a central sensitization expert, by any means. But you know, there is literature, both in healthy individuals and in people who have chronic pain—literature, it’s experimental data. So you bring people into a laboratory and usually there’s some kind of a pain testing experiment, we call it. You know, evoked pain, where you maybe place the hot thermode on a person’s hand, but you cause new pain. And then you’re able to study people’s reactions to the pain, how much that influences their report of how much pain they’re experiencing as a consequence of it. We can put people in that fMRI scanner and see what changes in the brain while people are experiencing pain and how thoughts can influence how much, both what is occurring in the central nervous system and how much pain a person is reporting as a consequence of that. So bearing in mind that that is, you know, very different from what anyone may be experiencing in their daily life at home, i’s an incomplete correlate, but it does provide us with some evidence about how these mechanisms operate. So what some of the science has told us is that when people are experiencing pain, let’s say in the laboratory, that if their mind is attuned to the pain and feeling very helpless about it, so ruminating on it and feeling helpless about it, it amplifies pain processing in the central nervous system. It amplifies people’s report of pain. And so I think this—the reason why this is so delicate is because as a person, if I have pain and I hear that message, I might think, well, they’re telling me, it’s all in my head, I’m making it up, it’s all my fault, my pain isn’t real. But I can tell you for mysel it does not mean that. What it means is that our minds can be very powerful, and it can intersect with various circumstances. And so think of our—we think of our brain as it has the capacity to amplify. It can amplify for positive, it can amplify for negative. And even if we step outside of the experience, you know, the topic of pain for a minute, and we can all, we can all imagine a scenario and maybe a scenario that, you know, was stressful, but, but if we focus on it can, we can actually feel ourselves getting upset. You know, it might, it might invoke sadness might invoke anger, it might invoke frustration, but we can feel our emotions amplifying as a consequence of where we’re placing our attention. So that’s literally it. It is an experimental paradigm that illustrates that pain is no different than any other circumstance. If we focused on a stressful conversation with a colleague or a family member, the more we get into it, the more stressful it’s going to be. So that’s how I think about it. I don’t assign overarching meaning to that. I think what it illustrates is there’s an opportunity here. This tells us, we can work with our central nervous system using various skills and tools to simply be able, be better able to put a container around the distress associated with that medical condition which can be very debilitating medical condition. And applying these skills and tools isn’t going to erase the medical condition. We’re not taking away diagnoses, and we’re not even going to take away the pain. What we can do is give people a critical level of control so that if we’re able to keep our nervous system calmer in the face of very stressful circumstances, then that’s providing us with a level of comfort that can be incredibly meaningful. So as a psychologist, when working with people with chronic pain, my goal always is to identify the opportunities to gain little pieces of control and to expand those. Because there’s so—chronic pain, so much of chronic pain, you know, from the diagnosis to the search for, to the search for a diagnosis that can take years. Sometimes people never get it, sometimes people feel invalidated by the medical system, by insurance. I mean, there’s just so many reasons that we feel a loss of control, and It’s real. That’s real.

Dr. Shilpa Venkatachalam  18:55

Well, thank you, I, I’m gonna take a minute here to absorb that because it’s also very empowering. And I’ll come to you Tien, I know you use different management modalities for your own chronic pain. And I’m reminded of the story, or the incident, I think this was a UK, it was based in England where there was a nail driven through a man’s shoe, and he was in excruciating pain until they rushed him to the to the hospital. And upon digging him to the hospital and taking out his shoe, they found the male wasn’t even in his foot. You know, similarly, we hear about phantom limb, the phantom limb phenomenon, etc. So It’s really very interesting, and if understood correctly  can be quite empowering to us as people who live with chronic pain. So Tim, coming to you, you know, you were part of a project that we did about three years ago that was funded by the patient centered outcomes research institute on chronic pain titled encouraging patients to manage chronic pain using the latest evidence from research And one of the objectives of that project was, was to share evidence based information on how our understanding of pain is not only changing but expanding, we have so many tools now to use, right. And I want to say again at the outset, to avoid any misgivings here, that when we talk about pain and emotions, as Dr. Darnall has eluded, we are not saying that pain is all in your head, or that pain can be addressed and cured by magical positive thinking. Because those of us who live with chronic pain, myself included, know that This is just not true. I see my joint a swollen and red and I feel the pain. And then there’s also the entire topic under neuroplasticity, and being processing that calls for an entirely additional episode. So Tien, what exactly do we mean by mind-body connectio? You are someone who has lived with this experience of chronic pain, and you’ve also written extensively on how you manage your chronic pain, both mentally and physically. Can you talk a little bit about that?

Tien Sydnor-Campbell  21:06

Yes. And I want to say in response to what Beth was saying. Absolutely with, there is something in the mind. Although we will say things like, it’s not just in your head, it is literally in your body-mind. They’re not separate. So if psychologically, you believe, and this is one of the things that happens when you are early in a diagnosis—I tell you, I know it takes years to get used to it—you begin to catastrophize, what else could be going wrong when you start to get new pain patterns, when you stop being able to do something that you could do literally from morning to to afternoon, or minute to minute. Walking into a grocery store, thinking you can walk through the grocery store and finding that your limbs are saying absolutely not. Because those kinds of things are a reality for people with, when we have chronic conditions like rheumatoid arthritis. It is in your body mind. So you do have to learn to process what you think is going on with what’s actually going on. My thoughts on the body mind connection are really there’s a lot of Eastern philosophy dealing with the chakras, and how with my body mind, somatic psychology background, that those things are also places where we hold emotional issues. So for instance, if you have chronic pain, and you have rheumatoid arthritis, right, I’ll use rheumatoid arthritis, and you have chronic pain that just so happens to be in your wrist. So yes, you can have wrist issues. You can have bone on bone issues. You can have crumbling, disintegrating bones like I’ve got. You can have tendons that are messed up. You can have all those things, yes, and those will cause pain. But if you are also dealing with what I consider heart issues—love, compassion, fear, pain in your heart issues, holding on to those issues also brings pain. So my approach is to let’s talk about the mental emotional stuff that’s in your wrist. And then you also talk to the doctor, physical therapist, occupational therapist, about what needs to happen to get your wrist better. Both things are true at the same time. That’s my approach.

Dr. Shilpa Venkatachalam  23:45

Well said. You know, I guess what we’re seeing is you can go so far as to say almost every experience, you have—touch, want, itch, pain—they’re all created and processed by the brain. And so in some sense, it is all in your head. But that doesn’t mean it’s not real. So you know, we’re bringing the two together. Having said that, Dr. Darnall, I’m going to come back to you. There’s a lot of research on using different tools. We talked about, you know, this expansion of understanding chronic pain. And we hear a lot about Cognitive Behavioral Therapy, or CBT. What is it, and how does it help with pain? Can you give us a quick overview?

Dr. Beth Darnall  24:30

Sure, happy to. So cognitive behavioral therapy is the best studied behavioral or psychological treatment approach. I, I feel like even the word psychological is so stigmatizing to people so even at, but I’m going to use it because that’s, you know, the origins of this treatment approach. But it’s been studied since the late 80s, believe it or not, so we’ve got like 40 years years of research. So when I say it’s the best studied, I mean it’s the most commonly studied. I’m not necessarily saying it has the best evidence because there’s other treatment modalities that have been shown to be equally as effective, or in some cases superior. But what cognitive behavioral therapy is abou, it can be delivered one on one or in small group format, usually with, you know, a specialist psychologist or therapist who has training in this modality. If it’s delivered in group format, it’s usually eight sessions, each session about two hours and length. So, you know, there’s a lot of variability here, but It’s most commonly it’s about 16 hours of treatment. So what happens over the course of this 16 hours? People learn a lot of information. So it’s both, itt’s sort of education, class based, you know, like classroom kind of delivery, as well as there’s, as people are learning about topics, they’re also applying that information to themselves in their own lives. So some of the topics that are covered. It’s like, what is pain, so It’s basic pain education. It’s understanding the intersection between pain and our mood, between pain and sleep, between pain and relationships, pain and activity, setting boundaries, goal setting. It’s, you know, it’s how pain impacts many different areas of our lives. And with the education, people can then learn how to set you know, how to identify goals for themselves and how to set goals that are meaningful to them. So I’ll give you one example. So often, I mean it’s natural that when we feel pain, we stop, we do less. And because pain is a signal that tells us to do that. And so that’s, that’s a human response. And it’s normal and natural. But with ongoing chronic pain, stopping isn’t always the best solution. And for some types of pain, in fact, what we need is to help people find appropriate ways of moving because the movement itself is therapeutic. And so this isn’t exactly, this isn’t like a psychological issue. This is overcoming our body’s natural tendencies. And the way that that information of pain registers within us. Pain implores us to stop. Pain tells us to escape whatever is causing the pain. So in this case, it’s movement, we want to stop. But with this learning—and again this isn’t universal, it’s not for everybody. For some pain conditions you do want to stop, okay? But, let’s just, you know, take it big picture. For some pain conditions, movement is therapeutic. And so we have to overcome that desire, recognizing that the movement, you know, gentle movement is helpful, is therapeutic. And we might have some ingrained avoidance behavior. We might actually have fear of movement because we’re worried about making it worse. And so this is where an integrated approach is really so crucial because you do need the medical evaluation. You need the medical clearance as part of CBT can be so useful. Because you can identify, all right, well, my goal is to walk three times a week for 20 minutes. You create a goal that’s on your action plan. And so then, for that week you move forward with your goal. When you come back the next week, the group talks about, okay, how did you do with your goals? Were you able to achieve your goal? Did you have any barriers? What were those barriers? And then that’s discussed in a supportive, therapeutic environment. CBT, group based CBT, is really lovely because it’s the power of the peers, you know. It’s each other. You’re supporting each other. You’re connecting. You feel validated just by the presence of other people. They’re sharing their stories. They’re talking about their challenges and their successes, and to be motivated and supported by a group is incredibly powerful because as everyone knows, you know, pain can leave us feeling isolated. We feel alone. Our worlds can become smaller. And so part of the therapeutic process is expanding our goals, but it’s expanding the scope of our world. And these group treatments allow for that. Just like you know, connecting on this podcast and as part of this platform is another way to outreach, to learn that you’re not alone, to hear success stories, to receive information, to be inspired to apply that in one’s own life. So this is really at the core of CBT. It’s dedicated. It’s a small cohort of people moving together in, you know, a semi-confidential format. I say semi-confidential, because you’re, you know, if you share information, everyone is on the honor system to not disclose that information. But I’m just saying it’s not public. It’s a private forum. And it’s a safe place for people to create those plans and then move forward with them.

Dr. Shilpa Venkatachalam  30:43

That was great. Thank you. And you know, me and Tien were both vigorously nodding perhaps for different reasons. Tien is very experienced with this area of mind-body connection. I was nodding because I recognize, you know, I live with chronic pain and sometimes I really do resist moving. I have to be honest. Because it really hurts to move more. So I, you know, it’s very useful to understand from you what CBT and things like movement, etc, can do for your chronic pain. We’re coming to the top of the hour, and I do want to touch on a few more topics. One very contentious one, that of opioids and pain management. And Tien, you alluded to this before. For our listeners, opioids are a class of drugs, medications that derive from or copy natural substances found in the opium poppy plant. Opioids have a similar mechanism of action. They set in motion an area of nerve cells in the brain and body called opioid receptors that stop or essentially block pain signals between the brain and the body. And examples of opioids include morphine, codeine, oxycodone, hydrocodone, and fentanyl. And we all know they work very quickly to resolve pain. I’ll be the first to admit that I have used them for excruciating pain on occasions, and they have done wonders for me. We also know the increase in opioid related deaths in the United States, and in other countries as well, has galvanized this national conversation in medicine about the appropriateness of opioids for the treatment of acute and chronic pain. And there’s been a ton of concerns about the potential to get dependent on them, on their potential to really recalibrate and lower pain thresholds, something that is often referred to pain hyperalgesia. And so I know we can’t talk about all these issues, but let’s just try and touch upon some of them. Tien, as someone who lives with chronic pain, are there times you feel like the pain is too much that anti inflammatories and your other medications are just not helping? And when you’re in those situations, have you been prescribed opioids, and what was your experience with them?

Tien Sydnor-Campbell  33:05

So I currently take opioids, and I use them as directed. I use them only as directed. And if I feel like I’ve been given even emergency opioids to use in between, if I’m having non walking days, I still have to try. And when I try, I mean try. And then I try to soak in the happy of the moment that is outside of getting pain relief because that pain can be so excruciating that nothing works. And I’ve been to the ER. And I’ve said, “You can’t give me anything that I don’t already take, so why don’t we just go to a steroid injection?” And I had to go through lots of different medications that did not work. I was taking so much Gabapentin that—and it was doing literally nothing. It wasn’t until I took an opioid that I was like, oh my god relief, right? So let me take the relief, and as long as I need it. I would love to come down off of the opiates when we find something that actually works to keep me out of that acute pain. I’m all for it. But until such time, don’t snatch it away. I think that it’s important for people to know their motivations when they’re taking the medication, right, and to pay attention to the effects of the medication on their system. And to ask their families to be aware of the medication effects on their system and their family environment. Those are all you know, everything that goes on in your world is also going on inside of your body. So if you’re in a lot of pain, and you’ve been diagnosed—you have diagnosis that allows you or has been, you know you’ve been given opiates to deal with the pain—make sure that it is just dealing with the pain. Because sometimes if it’s disease activity, then that might mean you need a change in the disease activity, the disease modifying agents, instead of more pain medication. And that’s a discussion that I always have with my pain medicine doctors and my rheumatologist. So I hope that answers your question.

Dr. Shilpa Venkatachalam  35:28

Thanks Tien, for sharing. It does. And it’s such a difficult topic, you know, so thank you for sharing with us. I’m trying to much against my will, bring this conversation to wrap because I could talk to you both on so many different topics. Dr. Darnall, you know, both me and Tien have talked about how we’ve turned to oxycodone or opioids for controlling pain at moments when nothing else helps. There’s a lot of, well patients and doctors have often felt caught in this national crisis around opioids. There are prescribing limitations. Patients feel stigmatized, even when they’re being prescribed opioids under careful monitoring. Doctors are worried they may be penalized. Can you briefly talk a little bit about whether or not there are benefits around short-term opioid use for pain control? Is there an avenue, I guess what I’m asking is, if there is an avenue for the safe use of opioids, especially for those who really need it? And who determines who really needs it in this climate?

Dr. Beth Darnall  36:39

Yeah, well this is a great question. And, you know, I’ll just say out of the gate, of course, there’s a place for opioids, of course there is. And for short term, and for long term—opioid use in the right people, in the right circumstances, at the right dose. And, you know, that’s, that’s for a medical professional to decide. I have testified to the US Congress three times advocating for protections for opioid access to patients who need them and for those who are benefiting from them. This is a huge issue, and what we’re missing is that therapeutic use, and that there is a subset of patients with complex medical conditions who are gaining benefit, they’re helping them be more functional. And what we really need is better research on this topic. It’s, you know, one of the problems is that we don’t have good funding to conduct research to show who’s benefiting from opioids, because wouldn’t that be the best study? Is to show who’s at risk and for whom they don’t work? And then to identify those for whom appropriate use is truly therapeutic and helps people be more functional. So we’ve actually been advocating for more research on this topic. A lot of my work has been focused on helping people need and use as little medication as possible. Whether that’s NSAIDs, Tylenol, or opioids, there’s risks with everything. NSAIDs can be riskier than opioids. There’s so many deaths per year on this medication—GI bleeds, you name it. It’s under appreciated. What we need is to identify for whom which medication is beneficial, and then to also expand everyone’s toolkit. So they’re like Tien, and they’re like, yes, we’re, we have this whole toolkit. And this toolkit allows us to need and use as little as possible. I feel like we owe that to every person in America. I just want to say before we close out we’ve been studying opioid use in the United States within our group, and we’ve been studying 1400 individuals taking long term prescription opioids. And about 850 of these individuals are across the United States. And we’ve been asking people, how much benefit do you get from your opioids, and we’re gonna have some data to share soon. I can give you a little bit of a sneak peek tidbit that unsurprisingly, there’s variability. And unsurprisingly, the people who are taking the medications are reporting a crucial level of benefit. And this does not mean that people have addiction. And in fact, we’re able to tease that apart and say when opioids are used appropriately, people are reporting X level of benefit. So I’ll be happy to share those data with you shortly.

Dr. Shilpa Venkatachalam  39:46

Yes, please do and please keep us posted on your research and we’ll also provide links to our listeners to some of your research and Tien to your your writings as well. There is so much to discuss on thia topic. We’ve only really broached the tip of the iceberg here, of course due to time constraints. You know, talking about more research we, for example, at Creaky Joints, we surveyed about more than 1000 patients with rheumatic diseases to understand how many of those patients had tried medical cannabis, for example, at least ones most commonly for pain, and whether they had used it or not. We found that 66% said they wanted more information about it, and 54% said they preferred to have that information come from their physician. So going back to your point, Dr. Darnall, I think more research is the key word here. We need more research on a number of topics, whether it’s opioids, medical cannabis, etc. And I hope that’s that’s where we will go in the future. I want to wrap up this conversation by asking you both about future directions and hopes. You know, there’s a ton of research going on Dr. Darnall, you’re doing your own research. You’re leading many of your research projects. The National Institute of Health has diverted millions of dollars to identify better ways to treat pain and less risky treatment options. I’ve even read about people who are unable to feel pain, right? That can be dangerous, too, because pain tells us what to avoid very often. But I think researchers trying to gain insights from gene mutations that cause people to lose any sensation of pain, and so on and so forth. All this to say there is much to come in terms of our understanding of where the next decade will lead us to. What are your thoughts and hopes for the future of pain research and treatment? And I’ll start with you, Tien. And then hand over to you, Dr. Darnall.

Tien Sydnor-Campbell  41:38

My hopes for the future of dealing with pain management is that every treatment provider is able to see a whole person and treat a whole person, and not just their specialty.

Dr. Shilpa Venkatachalam  41:57

Dr. Darnall?

Dr. Beth Darnall  41:58

Yeah, well, I love that. And just to build on that, one of the big issues that we have in the country right now is that the providers who are evaluating and treating people with pain don’t have access to the full toolkit. They just have access to a tiny toolkit. And so, so even if they’re, they see the whole person, they don’t have access to ways to connect patients to the different types of care that they need. So this is what our research is focusing on is connecting people with a diverse toolkit of non-pharmacologic treatments so that every person in America and around the world, regardless of proximity, regardless of race, ethnicity, regardless of socioeconomic status, and regardless of whether they’re connected to a medical institution or health insurance has open access to this resource. And that’s what we’re focusing on.

Dr. Shilpa Venkatachalam  43:02

Wonderful. What a hopeful and empowering note to end on. So before we conclude this episode, I would like to pass the mic to my colleague, Dr. Ben Nowell. Ben is Director of Patient-Centered Research at the Global Healthy Living Foundation and has been listening into our fascinating conversation. Ben, a penny for your thoughts. What did you find most interesting in this discussion?

Dr. Ben Nowell  43:27

Thanks Shilpa, and thanks Tien and Dr. Darnall for your interesting insights into pain. A few things really struck me about this conversation. One is that pain is not monolithic. When we talk about pain, we’re actually referring to a lot of different elements. And it just points to the limitations of our available language. When we talk about pain, we’re actually referring to a lot of different things happening at once and a lot of different types of pain. As Tien pointed to when she talked about first realizing she had rheumatoid arthritis, and that the pain she felt from the inflammation there was very different from the other pain that she’d felt either from recovering, muscular recovery as an athlete, and also as someone living with osteoarthritis. The other thing that struck me too was was Tien’s, articulate explanation of this idea of a body-mind, that, you know, we’re so used to, accustomed to thinking of our bodies, our physical presence as being distinct or separate, separated from our minds and our thoughts but actually, it’s all part of the same thing. So I think that’s another area that is interesting to wrap my own head around in my own life of how our bodies and our minds are really connected. It’s not separate or dichotomous.

Dr. Shilpa Venkatachalam  44:50

Thank you, Ben. It’s an absolutely ginormous topic, to say the least. Well, thank you very much, Dr. Darnall, and Tien for sharing your experience and send your insights with us today on this episode of Relatable Rheumatology.

Dr. Beth Darnall  45:04

Thank you so much. It’s a pleasure.

Tien Sydnor-Campbell  45:06

Thank you Shilpa for always being so helpful in making sure that the advocates have a voice in every conversation surrounding the treatment and care for people with chronic conditions such as rheumatoid arthritis. I really appreciate you and Ben, thank you.

Dr. Shilpa Venkatachalam  45:28

I hope that our listeners have found this episode insightful. You know, living with chronic pain poses challenges, both physical and emotional everyday for some of us. And sometimes there’s too much information especially on a topic like this, often contradictory. And sometimes just engaging in a conversation can be difficult because of different opinions and experiences, and the plethora of research. And so it can make it really tricky to decode what can be relied upon. That’s why we created this podcast, to bring together real life experiences of people living with rheumatic diseases and expert research evidence to shed light on the questions and challenges faced by those living with these conditions. Remember to subscribe to our podcasts so you never miss an episode, and help spread the word by rating our podcast, writing a review, and sharing us with your family and friends. If you have any questions, thoughts, or suggestions for a particular subject you would like us to cover, you can send us an email at [email protected]. We look forward to sharing more information with you during our next episode. This podcast is brought to you by GHLF and HCP Life. Thank you for listening.

Narrator  46:48

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Ben Nowell  00:10

Hello, and welcome to relatable rheumatology from stories to studies. I’m your host, Ben Nowell. In This episode, we’ll be discussing a topic that is critically important for patients with rheumatoid arthritis, blood work, or laboratory tests for many people with rheumatoid arthritis or RA, lab tests are a regular part of their healthcare routine. That’s because these tests help providers monitor disease activity, track the effectiveness of treatment, and identify potential complications. But for patients, bloodwork can be confusing or overwhelming. What are all the tests for? What do they have to do with treatment decisions? And what should patients know about them to be informed participants in their own care? Whether you’re a physician or a patient with inflammatory arthritis, This episode will provide valuable insights into the evolving role of bloodwork in RA care. To help us explore these questions. We’ll be speaking with Dr. Deen Allen, a PhD in cosmetic chemistry. Deen also lives with RA and has about 17 years of bloodwork to show for it. We’ll also be speaking with Dr. Leanna Fraenkel from Berkshire Medical Center and Yale School of Medicine. Dr. Fraenkel is a rheumatologist, a well-respected researcher and mentor, and an expert in shared decision making. She’ll tell us about bloodwork from the perspective of a practicing clinician and researcher, and how this information can be used to improve patient outcomes. If it’s all right, during this interview, I’ll refer to you as Deen and Dr. Fraenkel respectively, so that it’s clear for listeners which perspective is being shared—patient or clinician. A big welcome to both you, Dr. Fraenkel, and you Deen for joining us for this episode. So let’s start with you, Dean. Tell me how did you get diagnosed with RA? Was your bloodwork part of that process?

Deen Allen Jr  02:15

Ben, thank you so much. For me, it was a long and crazy process. Bloodwork kinda was part of the process. I was misdiagnosed for about four years. And when it finally came for testing with RA, I presented all of the symptoms of RA. So it was you know, I finally got the diagnosis of seronegative rheumatoid arthritis. So, for me, it was a crazy process because I think I might have given more blood during that time than I would like to ever imagine.

Dr. Ben Nowell  02:56

I can imagine. Thanks, Deen. Dr. Fraenkel. What do you say to patients when they’re going through that diagnostic process? And in particular, patients who aren’t convinced that they have RA because they are rheumatoid factor negative, or RF negative?

Dr. Liana Fraenkel  03:17

Well, I think it’s first important just to acknowledge that in rheumatology, we have very few tests that we can run that definitively make a diagnosis. It’s very different than some other specialties. You know, to diagnose diabetes, you have a very specific test that you can do, and the test and the number make the diagnosis. It is not so at all in rheumatology. In rheumatology most of the time the diagnosis is made clinically based on a patient’s history, and the exam findings that they have. And tests are typically used to confirm that diagnosis. Now, we’re hoping that changes one day and we’ll be much smarter at this. We’ll be able to take your blood, Deen, and run it through a computer, and have a much better idea of exactly what your immune system is doing, right? Hematology and oncology, the cancer doctors, used to be where we are, and they are much more sophisticated now and making a specific diagnosis based on specific mutations you have in your DNA. You know, we are aspiring to that. And hopefully one day will be much smarter in terms of making a more specific diagnosis and being able to figure out based on what your immune profile is, what treatments you’re likely to respond to. And one day rheumatoid arthritis might be, you know, a name of the past. We might be better at parsing out exactly what type of inflammatory arthritis you have right now. Rheumatoid arthritis, as Dean you said, might really represent a wide variety of patients, right? Somebody with a couple of swollen joints and feet that really hurt. Somebody else with the classic picture of first my hands hurt, then my wrists hurt, then my knees hurt. Right now it’s very, very variable. And for that reason, it can sometimes sometimes take a longer time to be diagnosed. The other problems which you alluded to, people might falsely assume that if I take your blood, your blood test right, and your AMA comes back negative and your rheumatoid factor comes back negative, and you’re anti-CCP, other antibodies we have now for rheumatoid arthritis come back negative, you don’t have that, and so I’m not going to send you to the rheumatologist. That’s a big mistake, right? So that in, what we should be doing is be asking you questions about your symptoms, and doing a physical exam and basing our decisions based on that. And that’s what we try to explain to our patients, these tests are not perfect, right? And actually, they’re not always needed. If you come to me and you have rheumatoid arthritis because I take your history and it’s classic for rheumatoid arthritis. And I examine you, and you have inflammatory, you know, joint disease in a pattern that’s classic for rheumatoid arthritis. And you don’t have something else that explains your symptoms—that’s also really important—because we have markers in rheumatology. Right, then the blood tests actually are not important. They’re not going to change my mind. You can make an argument; I don’t need those two blood tests to make the diagnosis. Some may argue I want to be 100% sure, right? That’s actually faulty decision making, because there are people just like you who don’t have those blood tests that are positive. So if they’re negative, it won’t change my diagnosis. The other value, though, might be that if the numbers are very high, they actually might mean that your prognosis is a little worse and I might be more aggressive in my treatment recommendations. But diagnosis right now is based on your clinical presentation.

Dr. Ben Nowell  06:42

Thanks, Dr. Fraenkel. Very interesting. So let’s shift then from diagnosis, where it sounds like bloodwork is perhaps, in some cases, confirmatory or might help with some treatment decision making. For example, like you said, more aggressive disease. And I’m curious, from your perspective, Deen, what in your own blood work has been particularly indicative or helpful for you now that you’re well into your disease journey?

Deen Allen Jr  07:12

That’s the CRP. CRP for me is like the benchmark because I have learned over the years where my baseline is. So when I first started my journey, I had no idea what any of the diagnostic tests were, right? And even the, you know, I would sit there, get the reports, and I’m like, oh my gosh, that are the—what is all of this? And I really took the time to learn and understand what each of the tests were and what they represented. And then I found that CRP for me is like the marker, because—or the tests—because I know where my baseline is. So if I’m eight or below, I know that I’m okay. But if my numbers are creeping up to eight, and all of a sudden, I start to feel, you know, my fingers are getting a little tight. Yeah, my elbows, okay. Then if I go over eight, then that’s when I know I’m in trouble. And then, you know, I will immediately call my rheumatologist. Hey, we have to talk. What do I need to do? My numbers are a little high. I’m in a flare. What can I do?

Dr. Ben Nowell  08:28

That’s interesting. That matches up from this study we did recently in Arthritis Power of over 400 people living with RA. And among those respondents, patients perceive that their CRP was the most helpful to them and understanding their disease activity. But still, it was only something like 48 or so percent of the respondents who indicated that. And really, I think it’s all about the comprehension of the purpose of particular blood work and what the results mean for people. So my follow up question for you, Deen, is what would you tell other people? I mean, what are questions they can ask their doctor that will help them get a handle on it?

Deen Allen Jr  09:11

Yeah, that’s a fantastic question. I would tell them to basically, take a look at the CRP and maybe sed rate because some other people I’ve spoken to have found that that one is been very helpful. And then you know, just say, hey. Sit down with the doctor and then just take a look at the history and understand like, how your body is responding in, you know, with flares, non-flares, and what those numbers look like. And then you can really start to see a pattern and then develop a strategy around, “Okay, this is my baseline.” I tell lot of people that I talk to who have RA that really don’t understand it, that you really have to understand. You’re right, you know—there’s so many other tests that it can be overwhelming. I’m a nerd. So I sat down and just basically, like, studied all of them so I can completely understand what I’m dealing with. So to me, Ben, those two would be the most important and being able to feel empowered to have that open and honest communication with your rheumatologist.

Dr. Ben Nowell  10:23

Thanks, Deen. What about you, Dr. Fraenkel? What do you see in practice? How do you use those tests to talk to patients on the ongoing monitoring?

Dr. Liana Fraenkel  10:34

Yeah. So one Deen, I hope you’re feeling better, most importantly. Good. So I think we just—I want to add just a little bit of caution to what you said because this pattern does not seen with everybody. So I don’t want all patients to feel that they need to know what their CRP is, and that CRP always reflects how active their rheumatoid arthritis is. That’s really important. So just like you said, you know, your rheumatoid factor tests were negative. In some people, they can have active rheumatoid arthritis and their CRP is not elevated. And that actually is very annoying to patients, right? Because they don’t feel well and their blood inflammatory markers are not elevated. And it bothers them like, you know, like, is there something? Am I—is it really my arthritis? Is it something else? So the opposite can happen, and it can be disempowering to patients. So we have to be a little bit careful. The correlation is far, far from perfect. This is not a blood pressure medication that accurately reflects your blood pressure, and is not a blood sugar. So it’s really important to recognize that in some people, the CRP better than the sed rate. The CRP goes up and down better than the sed rate. But in some people, it does not correlate well at all. So that’s really important. If it’s not elevated, doesn’t mean your disease is not active, and it’s still very important for you to speak to your rheumatologist. And rheumatologist are very well aware of this discordance. The opposite is also true. It’s very important not to always blame a high CRP on your rheumatoid arthritis. Because the high CRP can be reflective of other illnesses, right? And for example, infection, right? So that’s it. So you don’t automatically want to blame the high CRP or associate the high RC with rheumatoid arthritis either. So just a little caveat that it’s not always perfect, and it sometimes can be very helpful. So it sounds like what you’re saying is I might have some symptoms, but I’m not sure if it’s related to my rheumatoid arthritis. That’s when a CRP is particularly helpful because it sounds like you’re tending more to your symptoms, like you’re kind of taking better care of yourself, not ignoring things. If your CRP is also going up, which totally makes sense for you and others that might not track your disease as well, right? And if you’re feeling unwell and you know it’s your RA, you don’t kind of need another blood test, right? Because you know. It’s helpful, I think, to rheumatologists when we’re not sure. When somebody has pain and fatigue, for example, but we don’t feel a lot of swelling. Then, if your CRP is elevated and I know it goes up when you have high disease activity, that’s really helpful because that’s gonna say, okay, it’s time to increase the dose of your medication or to add a medication, right? As opposed to, well, maybe this is due to another cause of joint pain that we should focus on. So sometimes very helpful and adds a piece of information, but sometimes does not accurately reflect disease activity. So we should just be aware of that

Dr. Ben Nowell  13:36

Sounds like from diagnosis and even in ongoing monitoring that blood tests are not going to tell you everything.

Dr. Liana Fraenkel  13:44

When we’ve ask patients about their experiences, this is what they’ve told us—that my blood tests are not telling my doctor about how I’m feeling, or my diagnosis was delayed because of my blood tests. So you know, it’s just to emphasize they are an added tool, but we need to recognize their limitations.

Dr. Ben Nowell  14:02

Dr. Fraenkel, I know that you see people living with RA over many, many years. Is there anything within the bloodwork that you find useful on the longitudinal basis?

Dr. Liana Fraenkel  14:15

So the blood tests to the, you know, the rheumatoid arthritis blood tests don’t have to be repeated. They don’t fluctuate with disease activity, and we don’t follow them. They’re really most helpful at baseline, to you know, one, make a diagnosis if you’re unsure, right? If I know it’s rheumatoid arthritis, I don’t need blood test for the diagnosis. If I know it’s not rheumatoid arthritis—you present to me with a big red toe—it’s not rheumatoid arthritis, it’s gout: I should not be ordering blood tests for rheumatoid arthritis. Because it doesn’t matter what they are; it’s not rheumatoid arthritis. But when you are in the middle—if I think this might be rheumatoid arthritis and we don’t want to delay diagnosis, then those blood tests if they come back positive, we’ll push towards starting a medication, right? Or push me towards following much more carefully. Or push me towards getting another type of X-ray to see if the person does have, you know, some signs of rheumatoid arthritis, for example on their MRI, that I don’t feel, right? So that’s when the blood tests for diagnosis are more helpful or most helpful, is sort of when you’re not sure. They add some valuable information. In terms of the other ones, the sed rate and CRP, that’s also really helpful in cases where they correlate with disease activity when they mirror how you’re feeling, like what Deen talked to us about, or when you’re not sure again, right? You have some joint pain, you have more fatigue, but it could be related to other things. If your CRP is elevated, that’s more support that this is active rheumatoid arthritis, and it is more evidence that we should go ahead and talk about a treatment change, right? Just like Deen you talked about with your rheumatologist, that pattern for you is very, very helpful. But the the blood tests that are most helpful and most important over time are the blood tests we use to monitor the medication side effects. That’s by far, by far the most important part of blood tests and rheumatoid arthritis, both before we start treatment, and to monitor treatment. And I talked to my patients about this all the time. We need blood tests to know which medications are safe for you and to make sure they stay safe for you. That’s why we need blood tests. The other ones are not nearly as helpful, right? So rheumatologists need blood tests to make sure it is safe for us to give a drug, right, that the patient hasn’t been exposed to tuberculosis in the past or hepatitis, and if yes how to mitigate that. And then to follow specific potential risks over time, like to your blood counts, and to your liver most importantly. Deen potentially, I’m curious to know whether or not you follow those blood tests overtime.

Deen Allen Jr  16:51

Yes, absolutely. Because, you know, once I started to really understand, I definitely, definitely now take a look at other tests just to make sure that I’m still in range, everything is good. And if I do—and I think my rheumatologist is sort of kind of getting sick of me because I’m like, “Hey, this level is a little high.” She’s like, “Deen, you’re okay. Don’t worry, you’re fine.” Just like okay, just checking.

Dr. Ben Nowell  17:26

Dr. Fraenkel, talking about the prognostic aspects of tracking a patient over time, how do blood tests compare with radiographic and imaging data that you have over time for patients? And how does that factor in alongside bloodwork and some of the other things you mentioned?

Dr. Liana Fraenkel  17:45

So that’s a great question. So where there is uncertainty around blood tests in terms of their prognostic ability, much less so with X-rays, right? So if you have signs on your X-rays, for example, in your hands and feet, when you first present to a rheumatologist, you’re in a different category, right? So what we try to do now with our medications is to prevent those from happening. But once you have signs on your X-ray, we consider you at higher risk for progression. And that’s another sign that, you know, there’s kind of no fooling around, right? It’s like if Deen, if you’re paying attention to your CRP, you know, if you knew you had your X-rays, you’d be on the phone with your rheumatologist. Let’s get going, right? So that puts you in a different category, and that we strongly want to prevent any progression in. Now, it’s also important to realize that the X-rays are one tool, right? And we can afford to get repeat MRIs on patients and honestly, they would be full of false positives, right, and we might lead to overtreatment. So that’s not a good thing, either. But it’s important for patients to know that, again, that’s one piece of information to help us, right, engage in a conversation that allows you to make the best decisions to prevent any long-term damage. Not just in the X rays, but also the things we’re not measuring, right, like heart disease, and other vascular disease, and osteoporosis and things that really can dramatically affect the quality of your life. So we use the X-rays, we use the blood tests, but most importantly, we use how sick you are, right, to come up with a treatment plan. These extra things will, I think, help us explain to patients why it’s so important that they start treatment, and that they follow a protocol that will allow us to treat to target, right? That is very important, right, that we do What Deen is saying with the CRP, but with everything, right? We want to treat to target and sometimes blood tests are important for, that sometimes they’re not, but we want to make sure you stay at a low low, low level of inflammation. CRP, joint pain, joint swelling, right, that will help us minimize any progression of your disease. So X-rays are another test that you can use.

Deen Allen Jr  20:03

Yeah, and that’s a great point. Because of my delay in getting treatment, the RA had impacted both of my hips. And I wound up having to have a hip replacement very early on in life. And that sort of threw me for a loop. I’m like, “Whoa, wait, what? What the—no.” So I wish, I wish I had, you know, X-rays, had done those much, much earlier because I think—and I could be wrong—but I think that they might have seen something in the X-rays very early.

Dr. Ben Nowell  20:44

So it’s interesting; I wanted to talk about medication decision making a little bit, and you both addressed the ways that bloodwork can be used and also the limitations of bloodwork. It doesn’t—it’s not the end all be all. But it’s very helpful for monitoring over time the side effects of medications as you both talked about. We’re presenting some data from Arthritis Power, and one of the things that we learned from this patient survey we did with more than 400 people living with RA is that 91% of the patients who responded worried that their current RA treatment would eventually stop working for them, and 82% worried that they might waste time trying the next medication that was prescribed for them when it may not work for them.

Dr. Ben Nowell  21:52

I’m here at EULAR 2023 in Milan, Italy. It’s a great privilege to be here with people from around the world learning about all the latest in rheumatic disease research. And I gave a talk on patient perceptions of rheumatoid arthritis bloodwork and utility of a test predicting response to new medication, a cross sectional survey in the Arthritis Power registry. So it’s very much on topic for our podcast, and I spoke with a few patients who were in the audience after the session to get their perspective on bloodwork for RA, and even for other rheumatic diseases and how that lines up or doesn’t line up with their symptoms and how they’re feeling. What’s important to you about your RA bloodwork?

Deb Constien  22:35

The CRP is what I monitor and, again, the medications I’m on, to make sure my kidneys in my liver functions are good. So I’m following to make sure all of that’s working. And I also raised questions within my portal to my rheumatologist or primary care doctor to ask questions. I’m like, okay, that looks really high to me. Is that alarming to you? Yeah. You know, usually I’ll get a response back from the nurse after they contact the rheumatologist and I’ll get feedback right away.

Dr. Ben Nowell  23:12

So Eileen, same for you. So how long have you been living with RA, and how does blood work come into that experience for you?

Eileen Davidson  23:19

Well, I’ve been diagnosed for eight years now. I was diagnosed at 29. The bloodwork as much as it tells me at that moment, maybe how much inflammation I have, RA is a systematic disease. It’s going beyond just that. So there’s been times where I’ve gone into my rheumatologist and she’s been like, your bloodwork is great, it’s fantastic, but I’m like, but I feel like crap. And my rheumatologist says, okay well, then we’ll go by how you feel. So I don’t think the tests are accurate enough. But I think having this precise blood test would not only take a lot of burden off of the patients, but the lack of rheumatologists that we have. How many times, like, how many times have we had to go to the rheumatologist a year for medications that are not working for us, especially when we have to try those cheaper ones that don’t necessarily work for everybody who’s got more advanced RA?And the burden of RA on people having to take, you know, go on disability. You have to stop working. If we had quicker, effective treatment, we would be—we would have better quality of life. And I think that’s what is really important to us.

Deb Constien  24:19

So I was doing all the background information and digging into this, like, different pieces of bloodwork because there’s so many, and the idea of biomarkers is life-changing. And I know I’ve mentioned that before in different aspects, but it’s life0changing because I have been on in 40 years, all the biologics, and so my first 20 years were bad medications that I had so much destruction, and the last 20 years have been with biologics. So the amount of destruction that I’ve had in my body has stopped, but I’ve been on all the biologics, and I’m on my second time through on a few. So the idea that I could actually save time and damage and actually know if a B cell inhibitor doesn’t work, or TNF inhibitors don’t work—don’t waste my time, because it’s three months to six months to nine months of time to even see if it’s, there’s any efficiency with it.

Dr. Ben Nowell  25:27

So the idea of a biomarker that could tell you that you won’t have to waste time on the thing is hopeful.

Deb Constien  25:32

Yes, yes. Oh, incredibly hopeful.

Dr. Ben Nowell  25:36

So that was very interesting to hear from patients on the scene. But now let’s get back to our guests for this podcast.

Dr. Ben Nowell  25:51

Is this something that you experienced too, Deen? I see your face in your hands.

Deen Allen Jr  25:59

100%. And, you know, I had no idea that this would ever happen. Because once once I was diagnosed, we started on a relatively, you know, mild treatment and then wasn’t working because the numbers weren’t coming down. So then we tried first biologic, and I’m like, you know, using it, and I’m like, hooray, yes. Oh God, relief, I’m happy. You know, I’m able to, you know, function and do stuff. Then about a year and a half in, I’m like, oh, what’s happening? Why, wait, my joints are swelling up again. Everything’s going crazy. And then started a second biologic, and hurray, yippee, woo, great, fantastic. I have relief, again, quality of life is back. And about the same amount of time, about a year and a half to two years, boom, it’s failed again. At this point, I am just, I’m beside myself, because I’m like, will I ever find a drug that will work? Because This is crazy. I, I don’t want to start something new with the third biologic, and then started taking it. And now I’ve been on that one for years, and I call it, I literally call it my liquid champagne. Because when I am nearing my time for my infusion, I know it, my body’s like letting me know. And then I walk into the infusion center, and I’m like, pop the cork. Let’s go. Let’s get this puppy in me, please because I am ready for some relief. And this has been, you know the third one has been a godsend, but there’s always this nagging thought in the back of my mind, will this fail?

Dr. Ben Nowell  28:01

Dr. Fraenkel, what do you say about that? And how do you handle the fact that so many patients have that concern? What do you hope for the future of RA bloodwork to address some of those patient concerns, if anything?

Dr. Liana Fraenkel  28:19

So I mean, you know, Deen brings up concerns that I think are shared with every single patient with rheumatoid arthritis. This is a, this, you know, this is just a widespread concern for people, because of the uncertainty whether or not you’re going to respond to medication, and the variable amount of time you have to wait, and the uncertainty regarding each time you start a new medication whether or not you’re gonna get side effects, you know. So I mean, everybody would have these concerns, they’re, you know, they’re nobody’s immune to these. And honestly, the people who are more empowered to take care of their health, unfortunately, they’re probably more concerned, right, because they’re monitoring more closely. So it might be an added burden on you, Deen, because you’re taking such good care of yourself, you know, and you’re really on top of things. So it’s an added burden on you. The other issue about, you know, the potential for a medication to stop working, I try to stay away from the word failing, because it’s not really a failure, right? It’s more that your immune system is now behaving in a different way. Our immune systems are super smart, right? So we’re not just—we’re just don’t understand how the immune system keeps changing with rheumatoid arthritis. But there’s a fine balance between you want patients to be really hopeful that they’re going to stay well for a very long time—you don’t want them to be worried about when they’re not going to respond anymore—and setting up accurate expectations, right? I’ve learned that from my patients. You kind of need to let them know that this might not last forever because it’s hard to plan your life if you think you’re going to be in clinical remission for your whole life. And for some people, you know, it’s more urgent than others, right? If you’re a surgeon, you kind of, you need to know, you know, what the potential future holds in terms of flares, being in complete remission, the chances that you’re going to not be in complete remission. So I’ve learned that from different patients that, yes, it’s really important to be hopeful, you want to hope this lasts forever, but you need to have some expectations of what can happen so you can plan for that. You also need to know that there are things that we can do if you’re not responding to that medication, right that there, thank goodness, multiple, multiple treatment options now. And as we heard from Deen and the other patients that have participated, others of your research studies with Arthritis Power, Ben, is that you know, sometimes it’s a third, but sometimes it’s even longer, and it’s really important to stick with it. Really important to have a rheumatologist, you could work with, Deen as you so elegantly described, that you have a really good working relationship with, and that you don’t give up. You know, I hope it happens the first medication, and I really hope it happens the second if it wasn’t the first, but we’re not in the place now where we can practice precision medicine. So the most exciting labs that I am waiting for, that I hope will be when I am still practicing medicine, is on our ability to draw blood test and to match that blood test with a specific treatment. What do we need to block? Is it TNF? Is it IL-6? Is it a JAK inhibitor? You know, is it, what is it that you need right now, and that might change over time. And instead of a CRP, maybe we’ll be able to see how well your immune profile changes over time and preempt those flares. Oh my goodness, so many exciting things to think about, right? But that’s where we’re going.

Dr. Ben Nowell  31:45

It’ll be wonderful when that day comes. Deen, What about you? What would you like to see in the future of RA bloodwork in terms of research and practice and how it affects you and others living with RA?

Deen Allen Jr  31:58

Oh, everything that Dr. Fraenkel just stated. I mean, I will say that listening like, oh, yes, please let it, let it be so right now.  Because, you know, it’s sort of interesting how we have to almost play a guessing game, you know, to take—to try to figure out exactly, you know, which medication is going to work? And, oh, do you need this or do you need that? And, you know, my vision would be to just basically walk into a doctor’s office, give some blood, and then they do all this testing and they come back and they just say, hey, this is what we need to do. And that’s it. And you know, you can get the drugs, and life will be great. And the other thing for me also is that, I really hope and wish that more RA patients would participate in research. I think, you know, because we just live in these little silos, and we don’t want to step out of those silos and take the risk or, you know, be involved with research, you know, I think there’s, it’s a little slow, it’s being slowed down because there’s not enough research and these areas being done or maybe here are and there’s just not enough participants. So, you know, for me, everybody I talked to including myself, you know, I just like I try to encourage as many people as I can to take part in research because it’s critical. And we need the information. We need to understand more, and we need to help these wonderful rheumatologists who take a crazy, insane disease and try to make it simple for us to live and have really great quality of life. So, you know, my hat’s off to you, Dr. Fraenkel. I appreciate all that you do. Every rheumatologist that hears this, I appreciate all that you do.

Dr. Ben Nowell  34:13

Thank you, Dr. Fraenkel. Thank you Deen for sharing your stories and your insights about RA bloodwork. Before we conclude this episode, I would like to pass the mic to my colleague, Dr. Shilpa Venkatachalam, who closely listened to our fascinating conversation. Shilpa I would love to know your thoughts here. What did you find most interesting in the discussion? What about your own experience with RA bloodwork?

Dr. Shilpa Venkatachalam  34:40

That was so interesting and so insightful, especially for me as someone who lives with inflammatory arthritis myself. First of all, I found it so reassuring to hear that—to hear from Dr. Fraenkel that bloodwork is relied upon to monitor side effects, because I’m always worried about side effects from the many medications that I take myself for my rheumatoid arthritis. I also thought it was fascinating to understand that there can be discrepancy between bloodwork and how a patient is feeling. So for example, recently I was coming into a flare. I just knew it. We all know when you’re coming into a flare, but my blood work when I went in to see my rheumatologist was fine, not as bad as I was feeling. And it was so helpful to hear from Dr. Fraenkel. What my own rheumatologist told me, that bloodwork is not the only thing clinicians rely on when assessing how their patient is doing. It’s acknowledging that it’s not all in my head. And in fact, when my bloodwork was repeated, counts were elevated. This disease, at least today given the many medications that we have for it, is often invisible. So the fact that clinicians rely on various pieces of information is really helpful. And most exciting to me as a patient was how biomarkers can help in precision medicine as we move into the future. My hope, as someone who lives with RA myself, is for precision care, and it sounds like that is not very far away.

Dr. Ben Nowell  36:21

Thank you Shilpa very much for sharing your interesting insights and your own experience about RA bloodwork. I really, we all really appreciate your expertise and for being so open and sharing your own experiences, your own expertise about this topic.

Dr. Liana Fraenkel  36:38

Ben, thank you so much for having us. This is always a total pleasure. And I have to say special thanks to Deen because as usual, I learned most listening to patients, how they think, you know, what influences your decision making, your experiences. It’s really a very, very valuable experience for us. And thank you so much for your plug for research. Fabulous.

Deen Allen Jr  37:04

Yes, thank you. And Ben and the team and everybody, Dr. Fraenkel. Thank you and I’m in the same boat every time I’m with you, you like educate me on so much.

Dr. Ben Nowell  37:19

Thank you very much for your time. We hope you’ve enjoyed this episode of Relatable Rheumatology, where we focused on RA bloodwork. Living with the rheumatic disease can be a journey filled with questions, uncertainty, and challenges. Whether it’s navigating the diagnosis process, understanding treatment options, or managing symptoms, it can be difficult to find reliable information and support. That’s why we created this podcast to bring together real life experiences of people living with rheumatic disease and expert research evidence to shed light on the questions and challenges faced by those living with these conditions. Remember to subscribe to our podcast so you never miss an episode, and help spread the word by rating our podcast, writing a review, and sharing us with your friends and family. If you have any questions about today’s podcast, you can email us at [email protected] and we’ll be happy to respond to your question. We look forward to sharing more information with you during our next episode. This podcast is brought to you by GHLF and HCP Live. Thanks for listening.

Narrator  38:28

Be inspired, supported, and empowered. This is the Global Healthy Living Foundation Podcast Network.

Narrator  00:00

Be inspired, supported and empowered. This is the Global Healthy Living Foundation Podcast Network.

Dr. Shilpa Venkatachalam  00:09

Welcome to “Relatable Rheumatology, from Stories to Studies”, a podcast where we explore the personal experiences of people living with rheumatic diseases and the latest research evidence. Each episode invites the patient to share a question or concern that they encountered during their complex diagnosis and treatment journey to be addressed by our experts. We aim to bridge the gap between patient experience, research and clinical practice by providing relevant and relatable information. This podcast is a co-production with HCP Live. I’m your host, Dr. Shilpa Venkatachalam and I’m Director of Research Operations and Ethical Oversight of Patient-Centered Research at the Global Healthy Living Foundation. In this episode, we will be exploring how the lived experience of someone living with the disease condition like rheumatoid arthritis can systematically be documented via the use of what we call patient-reported outcome measures or PROs. Joining us to explore this topic today are Dr. Susan Goodman, Professor of Clinical Medicine at Weill Cornell Medicine and Director of the Integrative Rheumatology and Orthopedic Center of Excellence. She is also Medical Chief and Research Director of the Combined Arthritis Program at the Hospital for Special Surgery, a very warm welcome to Dr. Goodman. I’m also joined today by Shelley Fritz who is an educator and patient advocate who lives with rheumatoid arthritis and several comorbidities. Welcome to you, too, Shelley. So as we’ve been talking patients may have very different goals from their physicians as they make treatment decisions with their clinicians. As someone with an autoimmune inflammatory type of arthritis myself, I know that bloodwork, lab tests, clinical examinations, like joint exams that my rheumatologist orders, provides really important information in making key treatment decisions. But I also know that some information cannot be seen and bloodwork and can only come from me. And so combining these different sets of information and data can help to make care delivery and disease management more complete. So why don’t we start with you, Shelley? Can you tell us a little bit about yourself, who you are, what you do, and your diagnosis? How did it all happen?

Shelley Fritz  02:28

My name is Shelley Fritz, and I’m a retired educator, and I’m now doing some consulting for schools, and I’m also working in a fellowship with Global Healthy Living Foundation. I’m 53 years old, and I was diagnosed with seronegative rheumatoid arthritis over 11 years ago. And I’d just say that the road to finding effective treatment has not been simple for me. It’s been a little bit of trial and error, especially in the beginning. It took a couple of years to even get diagnosed. I had several missed diagnoses until we connected the dots and found out it was rheumatoid arthritis. But since my diagnosis in 2012, I made the decision with my doctor to change medications many times, in fact being on six biologics over the last decade. So It’s been a challenge finding the best combination of medications and treatments along with my lifestyle changes to keep my disease activity down.

Dr. Shilpa Venkatachalam  03:26

Thank you for sharing that with us, Shelley and you, you did mention lifestyle changes, we know that RA affects everyone differently. Can you tell us a little bit about how RA has affected your life, family life, social life work life?

Shelley Fritz  03:41

Well, I’ll start off by saying that fatigue is a monster. It’s hard to explain fatigue to someone who hasn’t had the experience of chronic fatigue. It’s really different than if you say stay up late and you watch a late night show. And then you’re just kind of feeling tired the next morning. Eventually, you can boost your tiredness, you know, with caffeine or a brisk walk, but this is really different. Fatigue is completely draining of every ounce of energy in my body, and when I’m unable to start doing something, or continue doing something that needs to be done, it can cause problems, you know, at work and at home. So it’s kind of frowned upon to fall asleep in a meeting at work, right? So I felt my co-workers and my friends thought, you know, maybe I was being lazy or uninterested, but that really wasn’t the case at all. It’s made me feel guilty at times, for not being able to do all the things that I’d normally do when I’m feeling less fatigue. And I’d say the other way It’s really impacted me is pain. You know, it’s my supervillain—pain. I haven’t had a day without some level of pain since about 2009, so that was a few years before my official diagnosis of RA. And you know, some days the pain is very low and it’s really manageable. And I rarely think about it, um, but some days it’s radiating through my body and I still go through my day and I push through the pain, you know, so to speak. But on other days, it’s front and center. It’s all I can think about. So when I worked full time, on a more rigid schedule, I had to miss work sometimes because the pain was so intense that I couldn’t concentrate or move. And sometimes I went to work when I should have stayed home. And then I felt defeated, like the disease was winning, you know, and I became paranoid that my co-workers, my friends thought that I was less of who I had been before. I just felt like a less valuable teammate, kind of a bad Mom, because I couldn’t physically, mentally or socially do what I wanted to do. And I wasn’t the person I had been before. So it seriously impacted my whole being. It’s still, it still impacts me now, but in a whole different way. Because now I know It’s not my fault. And I know that I didn’t bring this upon me and, and I’m not letting it take over. I’m just actively working with my RA to adapt and continue to live my life the way I want to every day without the guilt and self deprecation.

Dr. Shilpa Venkatachalam  06:09

Well, again, thank you so much for sharing that with us. You know, we it’s obvious from what you’re telling us that it’s more than just physical. It’s sort of touches on every aspect of your life. And you talked a lot about pain and fatigue. And in fact, at Global Healthy Living Foundation, we conducted a study with adult US patients within our research registry, Arthritis Power. These were patients living with ankylosing spondylitis, fibromyalgia, osteoarthritis, psoriatic arthritis, lupus, and we invited patients to select three, up to between three and 10 PRO symptoms that they felt were important to track for their own disease condition. And the symptoms that rheumatology patients prioritized for tracking their disease using a smartphone app were fatigue, physical function, pain, and morning stiffness, morning joint stiffness. And so you know, Shelley, you talked a lot about pain and fatigue, for example, and, you know, I sort of understand this myself, because I live with inflammatory arthritis, but it isn’t really something your doctor can see, by doing a blood test. You don’t see fatigue and pain and a blood test. You don’t see it on an x-ray. How then do you communicate about this pain about how it interferes with your everyday life with your doctor? I guess I’m asking how do you make the invisible visible?

Shelley Fritz  07:38

It’s been difficult at times to talk with my rheumatologist about symptoms that can’t be seen with a human eye because when the bloodwork looked, all right, you know, the decision by my at my appointment, I kind of let the doctor make that decision. You know, okay, let’s continue with the treatment you’re on because it seems to be working well, it looks good in your lab work. And it wasn’t until I said, “But wait, you know, I have extreme pain, I can’t sleep, I’m waking up in the middle of the night and then when I wake up, I can’t go back to sleep.” My fatigue level and pain would be so intense that I’d miss work. So missing work became one of the pieces of criteria that my doctor and I used to kind of gauge whether my disease activity was maybe higher than we thought from the bloodwork. So, it was sometimes hard to figure out if it was just a temporary flare, or if this would keep on going, and we might need to make a change in my treatment. So I ended up starting to track my pain by writing notes on a calendar. This was way back like a decade ago. And then I started even— I’m a math teacher—so I started making a line plot, you know, that would show my pain levels, and how they were fluctuating and increasing. And I took a lot of notes and tried to figure out what the triggers were that were spiking my pain. I brought that to my doctor and my rheumatologist and I talked about it, we looked at it and look for trends. And I think just doing that alone, the doctor knew that I was taking this very seriously. And I was tracking my health. And it you know, it gave my opinions about my own health more merit. And I know it sounds strange, but if It’s not showing up in the bloodwork, you know, my doctor would often dismiss it as an important symptom. And just tell me to get more sleep or take some Tylenol for the pain. So, you know a little bit after that when Arthritis Power came out, I started using it when it was in a beta version. And it was really helpful because then I was more aware of the other factors like tracking the fatigue and my sleep and looking at how pain was really interfering with my life. And then I brought that data to my rheumatologist and it was just really eye opening because it was it was cause for us to change medications. So we did that multiple times over the years.

Dr. Shilpa Venkatachalam  09:55

That’s great. Thank you very much it could help other patients as well to understand the value of tracking symptoms. I want to come to you Dr. Goodman next. One of the 19th century founding fathers of modern medicine William Osler advised, listen to your patient, he or she is telling you the diagnosis. Can you help us as a clinician to understand what PROs are, and how they help you as a physician to help your patient better?

Dr Goodman  10:27

Hi, I’m delighted to be here, and I’m also delighted that Shelley explained what she’s been going through because I think it really highlights what we’ve tried to learn over the last decade that I think differentiates us from what we thought we were learning over the decades prior to that. One of one of the most revealing studies was a series of interviews with patients and physicians with rheumatoid arthritis. And what we’ve learned from that in which the patients and the physicians rank the symptoms that were of most importance to them, in deciding how active a patient’s disease were was how little overlap there was in the two. And in fact, fatigue didn’t even make it to the physician side of the ledger at all. So many times what we consider important, and what we as physicians hang our hat on really doesn’t turn out to be that relevant. Some things, you can understand that we’re we may have different needs from like bloodwork, obviously, we check for side effects and a lot of different things along that line. But when it comes to the fundamental symptoms, what a patient wants to get from treatment, where we’ve been way off the mark, and I think the development and the evolution of patient reported outcome measures is key, please say a little bit about where they come from? They don’t just sort of appear as received wisdom, these are instruments that now have been developed with a real systematic approach. So I work a lot with a group called OMERACT, an outcome measures development group, and methodology that is encouraged is first do a literature review, see what’s out there, what patients have already told their doctors. Secondly, talk to patients. And this isn’t—this is a very formal structured data gathering exercise in which we have interviews that are structured or focus groups, but we have conversations in which we specifically focus on what is important to the patients. That then gets distilled down to a list of domains, a list of areas, factors that the patients think are important. And then there’s a consensus process so that these can start with hundreds of different factors that gets whittled down to the most important through what’s called a Delphi exercise in which there’s several rounds of voting, in which you end up with a convergence. Physicians and patients respond to these; there’s frequently discordance, but eventually, the priorities converge. And then those factors that remain, the consensus picks become the domains used for what we call a core outcome set. And those are the core outcomes that then determine what we’re going to measure when we measure a patient reported outcome. There a couple of ways that that’s very important you Shelley also mentioned how many different treatments she had to go through, which I think is normal, unfortunately. I think we should also be aware how important it is to the federal agencies like the FDA and the European Medicines group, to have the results of patient reported outcomes. They want to approve drugs that will work for patients. So even if we had no interest, we had a great biological model, we couldn’t get those drugs past the FDA without having good PRO data. So whatever, whatever we’re trying to do, it’s become increasingly important that we do this with patient partners.

Dr. Shilpa Venkatachalam  14:31

That’s great. Thank you, Dr. Goodman. You know, it was very interesting to hear you talk about the rigor behind these, how these measures are developed. And in fact, you’ve mentioned OMERACT, which I was also going to ask you about. And for our listeners who don’t know OMERACT is a global volunteer driven not-for-profit organization. They’re committed to improving outcomes for patients with autoimmune and musculoskeletal diseases through advancing the design and quality of clinical studies. Dr. Goodman, I wanted to go back to your point about listening to the patient and integrating patient-reported outcomes in various scenarios. So, you know, interestingly enough, we did a study at global Healthy Living Foundation with other partners, of course, on what some of the barriers to treatment optimization may be, from a patient perspective, and how this may impact achievement of patient goals using PROs. And I just want to say we’ll add, we’ll provide the link to the full studies at the end of this podcast as well. But what we found was that there was a gap between RAPID-3 categories and participants own assessment of their disease activity. So again, RAPID-3 , for our listeners, is a questionnaire that patients answer that provides their doctor information on how the patient’s themselves perceive their disease activity. So it asks about fatigue, pain, physical function, and so on. And in this study, interestingly, what we found was that the RAPID-3 not be very informative and setting treatment goals from a patient’s perspective, exactly because of what you said. Patients may have very different goals than what’s being asked in the RAPID-3. For example, they may identify goals that are important to them as being as things like being able to ski, being able to attend a family wedding or a graduation. And so we know Dr. Goodman, as you have repeatedly attested that patients must be encouraged to share their treatment goals and expectations with their rheumatologist. But what are your thoughts on how patient-centered care PROs arose? How these can be integrated into clinical practice? How do you envision that happening as standard of care?

Dr Goodman  16:51

So I think what Shilpa has touched on really has two questions in it, and I’m going to break it down to answer it separately. One is, what do we do with the patient-reported outcome measures in terms of daily clinical practice? And I think that’s a little bit more complicated, because I don’t think a goal of skiing will be applicable to the vast majority of patients. But that’s something that would come out in a shared decision making process with an individual patient. So some people will have the expectation of a very high level of function, some people’s desires and needs will be more rudimentary. That’ll enter into how aggressive their treatment of course is, how much risk they are willing to accept in terms of achieving their treatment goals, and what they’re really looking for. And that’s a very individual decision made between the doctor and the patient in choosing new treatment goals. The fact that Shelley described bringing in a diary was really perfect for that because she had specific needs. I think we all kind of need not to fall asleep in the middle of a meeting at work. But I think there were a lot of other things that went into that, that were very personal, and would inform the decision she and her doctor made about her in particular. So I think in addition to using something that gives you, I would call it entry level data, something like the RAPID-3, that gives you kind of big picture, you have to take that and build on it for each individual patient, because every person has different different needs and different different risk profiles. So I think there’s not a one-size-fits-all.

Dr. Shilpa Venkatachalam  18:43

And that makes sense. So what you’re saying is, you know, we could use, it’s important to use the sort of the standard universally applicable measures, validated measures, that clinicians need to make decisions to help make decisions with their patients about their treatment, along with conversations that can help patients to articulate their own required, their own specific, personal goals. And that’s that’s a very important point so thank you for for making that. Again, we’re talking here about combining different data points, different kinds of information to provide better care. Related to that, then Dr. Goodman, you know, we’ve seen now that remote patient monitoring, or RTM, as it’s called, is now reimbursable. Would you encourage patients to track their disease using PROs in real time to inform patient-centered and patient evidence-based care? So I guess the question is, would you encourage your own patients to track their disease using PROs so that when you see them in a clinical encounter, you have that information at hand as well?

Dr Goodman  19:57

I think at this point, we don’t really know what to do with remote data. And I think what I heard Shelley say is that she didn’t think her doctor was paying attention to the things that were important to her. And that’s how she used that. And I think that was a very critical use of, of data tracking. The remote monitors, my concern about them as they currently exist, is it so much information that I don’t know that anyone knows how to analyze it on a day to day basis. But I will say the other way that we use patient-reported outcomes–and I think this is the second big use for them, is in clinical trials. The fact that Shelley had it goes through a series of different medications without finding help tells me a couple of things. One, we don’t know what different medications addressed. And we clearly don’t know what medications we need to give to each individual patient. So those are two huge topics. One way we use PROs is that we have to be able to demonstrate that what the majority of patients say they need are being addressed by a new medication. So that’s simple, we want to be able to pull data, we want to be able to study large populations. And we have to have various framework in which to do that. And the PROs provide that. The other non patient reported area that we’re also working on, and I won’t go into, has to do with a lot of the personalized medicine in the real, biologically driven research so that you know, in a dream world, I’ll be able to take tube of blood or a sample of synovial fluid and say, “Ah, this is what Shelley needs” and address her treatment changes in that way.

Dr. Shilpa Venkatachalam  21:59

We’re in sync, Dr. Goodman, because I was just going to touch upon clinical trials. And I, you know, I would love to learn more. I think all of us would love to have another podcast with you and so many of the things you’ve touched upon, but I want to come to clinical trials. And Shelley I’m gonna come to you very quickly. But we know that PROs can be used, as you said outside of the of clinical care encounters, and they’ve been gaining momentum now play a significant role as study and points in the development and evaluation of new therapies. In fact, the patient centered outcomes research institute PCORI urges that the outcome measures should include ones that patients prioritize and care about when developing new drugs and when testing them and trials. So Shelley, when you, let me give you a scenario here. So when you’re in a situation, when you have to start a new medication for your RA, for example, What are some of the things that go through your mind? What do you think through as you make that decision of whether or not you want to start this new medication? And really, here, I’m asking you about things like, you know, route of administration, whether this is an injectable, or a pill? But also, what are the things that you consider when assessing if your medication is in fact successfully working? How do you know that your medication is working?

Shelley Fritz  23:22

Well first, if I’m able to do all the things that I need to do and want to do without symptoms interfering, then I feel like my medication is working well. And of course, It’s more complicated than that, but I look at the data. And if does it show that my joint stiffness is less and my pain is less that usually lines up with how I’ve been feeling? You know, does it show that, you know, I’ve been able to sleep well, and without waking up in pain. If I’ve had a long stretch of that happening, I’ll start to talk to my doctor about that. But also, It’s important not to jump to conclusions, you know, and just say, well, I’ve had a really bad day, I had two bad days, I had a bad week; it could be a flare. So it’s important to kind of weigh with your doctor, whether it’s a flare, or if it’s really time to change medication. And when we do make the decision, and I say “we” because it is a shared decision making process between myself and my doctor, we’ll do the research on—I do the research on the drug that I’m considering. I’ll compare side effects and other factors like how it’s administered. How long if it’s an infusion, I want to know how long is the infusion, which will mean that I’ll need to go to an infusion center, you know, will that interfere with work? How long will the infusion be? Will it be all day or will it just be for a couple of hours or 30 minutes? It makes a difference. I think I think through you know how long I’ll need to wait to actually start the new medication after it’s approved and available. And another thing that I also consider is how the new medication will impact my schedule, you know? And can I take the medication at home myself? So I kind of weigh all those things and look at the benefits of the medication, and then talk about that with my doctor and then make a decision together.

Dr. Shilpa Venkatachalam  25:16

That’s great, Shelley. Thank you. Quick question. Just as a follow up, you know, Dr. Goodman was talking about personalized medicine as well. I’ll come back to you on that. Dr. Goodman; in fact, that’s such an interesting topic that we’d love to learn more from you on that as well. But Shelley, when you start a new medication, or you switch a medication, how do you assess for yourself whether that medication is working for you? So I’m really talking about endpoints here. I’m trying to understand if PROs can actually be used to determine what endpoints are actually important to include in clinical trials, for example. So could you share a little bit about that?

Shelley Fritz  25:56

Well, as I mentioned before, it’s really important, you know, to look at trends and not jump to conclusions. Because when I do have a series of bad days, I have in the past automatically thought, well, nothing’s working, you know, and it’s hard to see the light at the end of the tunnel and I think I need to change medications. So you know, a rheumatologist once told me, it was actually my first rheumatologist, he told me that it wasn’t so much that the medication that I wanted to break up with, you know, wasn’t working, it was that it wasn’t working as effectively for me, as it was designed to based on data from clinical trials. So it might be working at say, 30 to 40%, of effectiveness that it could potentially do for somebody else. So by tracking what’s going on with me, you know, and paying attention to my body and listening to my body, that’s how he’s able to look for, you know, what was really happening over time—thinking about specific joint pain and what was causing it. Because there can be different reasons for having a painful thumb, for example, you know, and it might not be my rheumatoid arthritis that’s causing that pain. So it’s really important to pay attention to not only how much pain you have, but where your pain is coming from, and what’s triggering the pain. So that’s where it gets more complicated, just trying to figure out, is this really my RA that’s really active? And is this a cause to change treatments? So you know, I talk about that with my doctor and then make a decision.

Dr. Shilpa Venkatachalam  27:27

Great, and Dr. Goodman, Shelley just mentioned, you know, she said her doctor, and we’ve all heard this, all of us who have some form of inflammatory arthritis, have heard it from our doctors, it might not be working for you, you know, so we have to find out what might work best for you keeping in mind the unique person that you are. And you talked about personalized medicine is. I know this is a probably a very big question to ask you but you’re the right person to ask I think. What is, how do you envision the future of medicine with PROs and personalized medicine? What does that dialogue look like to you as we advance and make medical advances in the field as well?

Dr Goodman  28:14

So, one of the groups I’m involved with is, it’s an NIH consortium that addresses basic immunopathology of diseases like rheumatoid arthritis. And the hope is that by identifying inflammatory targets, much the way TNF was identified as being a driver of inflammation in RA, what we’re hoping is it will identify, with even more specificity, what those targets are for each individual. We know for instance, in work that we’ve done, that if you can take PROs, and identify symptoms like morning stiffness, we found that there was a difference in the both the histopathology, what the joints looked like, from patients with different degrees of morning stiffness, both duration and severity. And those histological biopsies were very different between people with no morning stiffness, people with long morning stiffness, people with mild morning stiffness and people with severe morning stiffness. So there is physiology that drives the PROs in a lot in a lot of situations. And right now we’ve got a fairly blunt tool to to get to really figure out what’s what within our patient population. So if someone’s major problem is fatigue, for instance, we could say oh, well, we know what you need is this drug and that would be our priority for you. I think we’ll come to that by multiple iterations of experimentation, pro development and clinical trials. And it’s a slow process,  but it’s been a remarkable process when you think of where we are now compared to where we were in Osler’s time. There have been a lot of advances that have been incredibly useful to our patients.

Dr. Shilpa Venkatachalam  30:27

Well, that’s, that’s extremely exciting and optimistic, especially, you know, I’m sure it is for researchers and clinicians. But I think for patients particularly, and you know, I’m now thinking also as a patient, it’s so exciting to even imagine the possibility that at some point in time, we’ll be able to tailor treatment regimens to that specific patient, and hopefully, accelerate how patients can feel better, faster and easier, I suppose. So thank you again, for that. I just want to we have a few minutes left in the podcast. And I want to talk a little bit about major conferences, like, for example, the American College of Rheumatology, that now has, and actually this for the past few years, has a patient poster patient perspective track. And I know Shelley, you’ve done some work on that, in that perspective track as well. What I want to ask you is for rheumatic disease patients who may see their care providers once in three months, or even once in six months, if you’re doing well enough, there is an interim period where symptoms surely come and go, they rise and fall, they ebb and flow. Can you talk a little bit about, and you did touch upon this before, but can you talk a little bit more about how tracking your disease in real time has helped you and your doctor stay on track, but has also helped the community to understand what these diseases are and how they behave? And so why it’s important for international conferences, to showcase the patient perspective. And I know you’ve presented a poster at these patient, in the patient perspective tracks as well.

Shelley Fritz  32:20

Sure, the first poster that I worked on was on painsomnia, and painsomnia, we describe as having so much pain that you can’t sleep, you have trouble getting to sleep, once you’re asleep, you wake up in pain; it’s just hard to get back to sleep. So that was one of the pieces that I worked on. And now I’m focusing on using data again, to track my symptoms and try to put together another poster. But when I worked on that painsomnia poster with some other patients, we really looked at the data from–we used my data–looked at some sleep issues that I was having over time. And we took the graphs of those and included those so that you could see the trend in how my sleep was going or how pain was interfering with my sleep, I should say. So I’m actually using tracking my data now, not only for my own, you know, benefit so that I can see how things are going and see if it matches up to how I’ve been feeling. But I’m also doing it because as I’m using my data, I’ve been trying to make a change in my life to try to change something with what I’m eating on a certain like, I won’t call it a diet plan, but I’ve just kind of made some lifestyle changes. And I want to track and see how that’s going over time. And I’m hoping that you know, it’ll, it’ll be something that I could end up sharing maybe at ACR, hopefully in the future.

Dr. Shilpa Venkatachalam  33:50

Wonderful. And good luck as you as you move into the future. I want to ask you both, you know, we want to end on a hopeful note to and This has been such a fascinating conversation. Dr. Goodman, I’ll ask you first and then I’ll go to Shelley. What is your hope for the future in rheumatology research and rheumatology care? What is your–I know you might have many hopes–but can you give us one or two of your hopes for the future as we advance in this field?

Dr Goodman  34:22

I think one of the achievable hopes seems to be what we’ve referred to as personalized medicine, finding out through the course of detailed studies in which we correlate specific symptoms with specific mediators of disease, and then can plan a specific treatment course for any given patient. I think it’s an achievable hope. We’re getting closer, and we have a lot of the broad basics at this point. We know a lot about patients with RA and as Shelley’s pointed out, there are different types of pain, there are different ways that pain can intrude on your life. And one of the things we have learned is that some patients have pain that’s driven by inflammation, and some patients don’t. So while we’ve been giving the RA patients whose pain isn’t driven by inflammation, more and more anti inflammatory therapies like TNFs, that’s probably going to be a really easy, achievable goal. We can now identify these two huge separate groups of patients who aren’t responding to therapy, and I think that’s a that’s a key step. I think we’ll be able to refine that sort of precision over time, and get to the point where it’s not trial and error, and where we can actually select something that’ll work without going through what the first six medications you took. I mean, we really at this point, I also remember making rounds on patients who are being treated with aspirin and asking them how they were feeling and if they could hear the answer, they were taking a little too much. They if they couldn’t hear the answer, they were taking a little too much aspirin, and we cut back the dose by one and check a level. So I think the strides forward have been amazing. But boy, it just kind of makes you greedy for for more precision and more accuracy in what we’re doing.

Dr. Shilpa Venkatachalam  36:36

That’s great. And greed here is a good thing. I like the word I like achievable goals. And it’s such a hopeful note. So thank you, to you and to other researchers and clinicians who are working hard on making sure that patients like us have a better run with medications and choosing medications and making decisions. Shelley, as you know, you and I, I think we sort of identify with that word, achievable goals. What for you, as you think about the future of your own disease, what would you hope for, for people living with this condition as we move into the future?

Shelley Fritz  37:15

Well, of course I hope for our cure, that would be the best thing. But meanwhile, I hope there’s more research to find a cure. And I loved what Dr. Goodman said earlier about, you know, wouldn’t it be nice if we could just take, do a blood test, one blood test, and then be able to know what medication, what type of medication, is best for this patient? I would love that, that would be so nice, because I spent over a decade feeling like an experiment, you know, just like, there was just so many variables. And, you know, I just kept changing medications to try to find the right cocktail that was, you know, a good fit for me, and so many patients are like that. Some get lucky and the first type of treatment that they try works great for them, and for others, it’s kind of a hit and miss sort of thing that can last for months, years in my case. So I hope for precision medicine would be great to find, you know, that one test that could determine whether you have RA or not, and how how to best treat it. The other thing that I also just want to share real quick is that I hope that doctors will continue on this trend of, I hope it’s not a trend, I hope they’ll continue to talk with patients about what matters to them in setting their goals, that it’s not just about the lab work. It’s about the quality of life that you have as a patient, and what you want to be able to achieve. And you know, if your doctor isn’t, I would just recommend to people listening, if your doctor doesn’t bring this up with you, bring it up with your doctor because I had to change the way I talked with my new rheumatologist a bit from letting it being directed towards me to making a conversation. And now when we talk, he’ll say it’s your choice. What do you want to do? Here are the options. And we talk through it and it’s a much different conversation. So I’m hopeful that that kind of conversation happens between patients and their doctors.

Dr. Shilpa Venkatachalam  39:22

What a wonderful note to end this podcast on. And yes completely agree with you to combine different again, we’re talking about combining different pieces of information to get better care and to to have better treatment or treatment regimen. You did mention bloodwork and blood tests. I know we’ve talked a little bit about this and I’m going to bring in my colleague and co-host here Dr. Ben Nowell, who’s also going to host an episode, the next episode on bloodwork actually and so again, you you know both of you have are in sync with us here. Ben Nowell is the Director of Patient-Centered Research at the Global Healthy Living Foundation, and has listened closely to our fascinating conversation here. Ben, can I just bring you in for a minute here to ask you about your thoughts? What you found most interesting about this discussion, perhaps?

Dr. Ben Nowell  40:19

Thanks for the opportunity to comment on this podcast. Personally, I was really interested to hear Shelley talk about her experience as someone living with rheumatoid arthritis and seeking treatment that worked well for her. Shelley, you really went above and beyond I think what a lot of people do by tracking your symptoms over time. Even before Arthritis Power was available, you were keeping a journal of symptoms and changes to share that information with your doctor because that helps them know how you’re doing between visits. I was also very interested in what Susan, in what Dr. Goodman said about the future of patient reported outcome measures, and how powerful they can be in determining a more personalized approach to treating people living with rheumatoid arthritis or other diseases. That sounds like a very exciting area for research that needs to be done. Correlating PRO measure scores with radiographic data from x-rays and values from lab work that would allow us to see how PROs correlate with markers of inflammation and blood and other markers of inflammation to really understand what’s behind the disease activity, and how patients experience it, like what’s mediating the disease. So I think getting an understanding of what’s happening and how PROs can be integrated into the other information that we know about, about people living with RA is really exciting. And I really appreciate the the insights from Dr. Goodman, from Susan Goodman today and also, of course, from Shelley. So thanks very much Shilpa for such an interesting discussion.

Dr. Shilpa Venkatachalam  42:03

Thank you, Ben. I agree with everything you said. That was this has been such a fascinating conversation, and if I could, I would keep you both you’re forever. But thank you for you know, sharing your insights, your struggles, Shelley, the challenges that you faced, Dr. Goodman, for explaining to us the the advances that are being made in rheumatology, where we are today where we hope to go in the future. This has been a very fascinating conversation. So thank you both very, very much. We hope you’ve enjoyed this episode as much as I’ve enjoyed hosting our two guests today of relatable rheumatology, where we focused on patient reported outcomes in this episode. We all know now that living with a rheumatic disease can be a journey filled with questions, uncertainty, challenges, as we’ve heard from Shelley. Whether it’s navigating the diagnosis process, understanding treatment options, or managing symptoms, it can be difficult to find reliable information and support. And that’s why we’re creating this podcast to bring together real life experiences of people living with rheumatic diseases, like Shelley, with expert research evidence from experts like Dr. Goodman challenges faced by those living with these conditions. Please remember to subscribe to our podcast so you never miss an episode, and help spread the word by rating our podcast, writing a review, and sharing us with your friends and family. We look forward to sharing more information with you during our next episode. This podcast is brought to you by GHLF and HCP Life. Thank you for listening.

Narrator  43:42

This is the Global Healthy Living Foundation Podcast Network.