Narrator  00:00

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

Adam Kegley  00:13

Welcome to Remission Possible, the podcast dedicated to guiding and supporting you on your mission to achieve lower disease activity. We understand that this challenge wasn’t something you asked for, but remember: you are stronger than you think, and you deserve the opportunity to regain control and live your best life. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. In today’s episode, we’ll hear from Nathalie Robertson, a Canadian patient who was diagnosed with rheumatoid arthritis in 2003 shortly after getting married. Nathalie has always been and continues to be a very active individual. She works full time enjoys spending time with family and friends, loves kickboxing, and is a voice for the patient community. We will be discussing Nathalie’s personal journey with rheumatoid arthritis, including the decision to start a family with her partner while managing the condition, the different types of treatments Nathalie has tried, her experience advocating for herself to receive the best care, and how she defines and reached remission in her daily life. Whether you’re a patient in the early stages of your journey or someone looking for inspiration and motivation, this podcast is for you. So join us on this mission as we empower you with valuable insights and tips to break free from the cycle of pain and anxiety and ultimately bring you closer to achieving low disease activity. It’s time to rewrite your story because remission is possible.

Adam Kegley  02:06

Hi Nathalie, merci d’avoir accepté de partager ton parcours avec nous.

Nathalie Robertson  02:10

Ca me fait plaisir, merci.

Adam Kegley  02:11

For those of you who don’t speak French, I just thanked Nathalie for joining us today and sharing her story. And Nathalie, you said…

Nathalie Robertson  02:17

It’s a pleasure to be here, and thank you!

Adam Kegley  02:20

Thanks again, very much, Nathalie. We had to sneak in a little bilingualism, especially since you’re Canadian. And selfishly, I don’t want my French to get too rusty! And thanks again. If you want, we can just get right into things, and maybe you tell us a bit about yourself: your name, age, where you live, and the condition you live with as well as your profession.

Nathalie Robertson  02:40

Sure. I’m Nathalie Robertson. I’m 51. I live in Ottawa, Canada. I work full time. I currently work for the federal government, but have experience working in both the for-profit as well as not-for-profit industries.

Adam Kegley  02:52

That’s great. Thank you so much for sharing that, and I also wanted to ask if you could expand a bit on your personal journey living with rheumatoid arthritis. You know, anything from the road to diagnosis to your decision to start a family and maybe where you are now.

Nathalie Robertson  03:08

Absolutely. So as you said in the intro, I was diagnosed in 2003. So a quick calculation that’s about 20 years ago, and it was a bit of a rocky road. At one point, I was fine, like no issues. And then then at one point, I fell on some ice and my knee swelled up, and then it didn’t go away. And then other symptoms kept popping up. I didn’t really know what it was, but my wedding was coming up. I didn’t want to get into too much bad news at that point. So we went ahead with the wedding. And it’s interesting, because when you’re planning for something like that, you have a lot of endorphins going on, and that can suppress some issues. So my symptoms were at bay, but they came back very violently, let’s just say, later, actually, the night of the wedding, and then right after that, as well. And then things got really bad. And then it took a while. I took a number of appointments with the doctor, I asked for tests, I knew there was something wrong because my knee was swelling and my shoulders were sore and my wrists were sore, and it was challenging when you’re having a discussion with a physician and they’re dismissing it and they’re dismissing your pain, and it’s discouraging. And then at one point, I brought my husband with me to have a second voice to re-emphasize and I said “Look, I can’t leave here without knowing something. I need, I need a referral to somebody.” I did end up getting a referral. It was very dismissive. It was pretty much “Here’s the paper. It’s gonna take you months to get in.” And when I did go see the rheumatologist I walked in. At that point, I had problems opening doors, I had problems walking, and he looked at me, he looked at a few of my joints, and he said, “You should have been here months ago.” So validating in the sense that I knew there was something but sad in that I had to be at that point to be able to get a diagnosis. That first meeting was at the same time good in that I finally had a sense of understanding what was going on but sad in that when in the next breath he said “So you have very aggressive inflammatory arthritis. You’re going to likely be on medications for the rest of your life. And you need to get ready and be prepared for that.” And, you know, while I was looking to hear what was going on, the message that this is how your life is going to change direction, when you’re not expecting it was a bit of a blow and does send you reeling. You know, the discussion that we had almost right away was okay, well, we just got married. I’m not in my early 20s at that point; you need to make a decision. Either you decide to try to have a family now. You don’t know, we don’t know what the disease progression will be. He made it very clear that, you know, when your disease does progress, you can’t reverse the damage. That’s one thing he made very clear. So he said, maybe your disease will go in remission; sometimes it does. But he goes, if it continues to be aggressive, and it takes a long time for you to become pregnant, there are ramifications to that. So then the next question is, okay, well, what’s the alternative? The alternative was, well we get you on a plan, we try to get the disease under control, stabilized, and then you can make a decision at that point. Next question: well, how long can that take? Question is nobody knows. It can be a year, two years. It’s a question mark. But at that point, I was feeling so so terrible, you know, I said, okay, let’s do some medication. I can’t –  how can I care for a little person if I can’t really take care of myself at this point? So that was the decision that we made, and then got onto the journey of figuring out what was the right medication plan for me, and to start the family. I went through a cycle of different kinds of medications that were the more sort of traditional ones. And that was a couple of years. And again, that’s hard on the body. Because every time you take one of these drugs, it impacts how you feel. It impacts your skin, it impacts your hair, it impacts all sorts of aspects. I didn’t have a lot of success at that point. And then about three years after having embarked on that journey, I was able to get access to a biologic. And that was truly life changing. That was a game changer. So that was about the time when biologics were making their way into the market. And that really, then, you know, was an absolute game changer. It allowed me to sort of step back and really say, “Okay, now where are we at? What can life actually be?” And it was at that point that we said, okay, I think the disease was at a point where it was stable enough and have the conversations obviously with my rheumatologist and said, “Okay, what’s the process to try to have a family?” So we talked about the pros and cons of staying on the medications, coming off the medications. I read up on that; I made sure I, I was comfortable with the decision. And at that point, I made the decision to stop my medications to try to get pregnant. And I was lucky in that I got pregnant almost right away. I should actually step back because one of the things that I did decide to do – so, while the disease generally kind of took a pause, like slow down, I did have certain joint damage that did continue to take place. And that was in one of my shoulders. So for some people, it’s their knees, others their wrists, feet. For me, it was my shoulder. At that point, I had the discussions and I went to see an orthopedic surgeon and had the discussion with him about what that was looking like, because my shoulder damage was quite significant. And it was an interesting discussion, because at that point, I wasn’t even 40 yet. And he’s looking at me across the table and he said, “Yes, but you’re so young.” And again, you’re so young. And so you know, I said, I know that. But when you talk about quality of life and where I’m trying to go, and I think I was obviously successful in making a convincing argument that I really needed to have the opportunity to get that shoulder replacement, so that I could actually care for a baby. And so once we had the discussion, and he said yes, he said, okay, you’re in in three weeks. So that was okay, whirlwind situation, let’s get things going at work. And I will say that – not that I’ve had many other kinds of joint replacements – but it was excruciatingly painful, but it was absolutely a game changer. And so with the shoulder replacement, you know, it really is miraculous. I mean you have pain from surgery, but the joint pain that I was having, the reticence that I had to shake people’s hands, because the pain I knew that would shoot through my body when that would happen. The discomfort that I knew would happen every time I would have to open a door, anything having to do with my arm, which I’m right handed, it was my right shoulder, driving a stick shift at the time, everything was a problem. And the shoulder replacement really was something that allowed me to be able to sort of move forward on. And then after that, that’s when we made the decision to try to start a family and I had my shoulder replacement in July of 2006. And my son was born in October 2007. Everything worked out really well. I was able to hold my little baby and he was a beautiful boy.

Adam Kegley  09:45

Thank you so much for that. It sounds like the road to remission is a bit like trial and error. Maybe a bit not unlike parenting in that regard, working hard to make sure you’re doing your best. And I think you touched on this a little bit but could you maybe talk about your experience in terms of how you advocated for yourself to receive the best possible care? Because it seems like you kept asking those questions and pursuing different treatments, if something wasn’t working for you. I just wondered if you could expand on how you advocated for yourself?

Nathalie Robertson  10:16

Absolutely. So I think one thing that’s important to remember is that when it comes to anything, we’re all human, right? Everybody brings a different perspective. You know, obviously, your doctor, your physician, your specialists, they’re bringing in a certain set of knowledge, but they’re not you. And I’m bringing that part to the table. So it really is, to my mind, a partnership. It’s something that you need to go in, you need to inform yourself. What is the disease? Read up on it. You know, when you’re going, you need to know how are you doing? Where are you at? What are your symptoms? What are you trying to do? And go in with questions, go in with your thoughts. You know, what I realized was my physician was very open to having the conversation when he knew that I understood what was going on. He was very happy to have a conversation. If I was waiting for it to be a one way directional conversation, while that’s not have conversation, then. If I was just waiting on him to tell me what I needed to do, it’s sort of imbalanced. And I learned early on just to even get a diagnosis, I had to bring my husband with me. And it’s intimidating because you think you know, well, I’m not the expert in the medical profession. No, absolutely not. But I’m the expert of me. And I’m the expert of where I’m at. And so making sure that you’re comfortable having that voice and it is intimidating when you go into the doctor’s office, and they’re saying no, there’s nothing wrong. You’re like, no, there’s something not right. And sometimes just bring somebody with you a friend, husband, colleague, even, if you’re needing to, because also when you’re stressed, you don’t always hear everything. And you might forget things. And that’s where they can be your backup to say, oh, you were going to talk about this. Oh, yes, that’s right. Or don’t forget to ask with that. Oh, right. Or if you’re getting at the same time negative information back and you’re processing, it’s sometimes difficult to to pull it all together and having somebody with you can help you make sure that you come out with the objective that you had gone in with, which was to either get additional information, a follow up, a referral, or whatever the case may be. So I think from my perspective, it’s becoming comfortable with the fact that you have to be your advocate. In the healthcare system, I mean, you know, things aren’t necessarily connected. So you need to go in bringing your story with you, you have to go in knowing that you may have to repeat it all over again because last time you were talking to this person, and this person is not the same person and they’re not in the same office, and they can’t share all the files. In maybe in a few years, maybe my son’s generation, it’ll happen, but right now, you have to go in prepared. So we have a responsibility, I think as patients, you know, to know where it is that you’re at, what it is that you’re looking for. Go in with your questions and inform yourself as much as possible before because physicians are busy. They don’t have all the time in the world. They want to answer all the questions, but they just they really don’t have the time. So when you go in, you have to be focused, and you need to be very thoughtful about what is that one big thing that you need coming out of there. If you need to have a bunch of other questions answered, maybe there’s other people that can help or maybe other sources of information that are available to you. But I think, just, really taking that ownership and being comfortable in stepping into those shoes, which can be intimidating. I think that’s a really important part.

Adam Kegley  13:19

That’s a really, really important point, I think, and after hearing you talk about all of this, I’d actually be really interested to know how you define remission or low disease activity in your daily life since, you know, you’ve worked hard to get there and pushed when you needed to push, sought out answers where you needed to seek them out. If you weren’t getting them from your physician coming in with plans. You know, it can really be such a challenging goal in that regard, and I think you’ve touched on that earlier. And I’d also wonder what advice you have for others who are working toward the same goal, you know, especially when the going is often pretty rough.

Nathalie Robertson  13:55

Great question. I think one of the things that I didn’t talk about earlier that was really important for me is when I started to understand more about rheumatoid arthritis and I did a ton of research in the beginning. I read up on it, I tried to find other patients who had similar conditions because I was having all these weird symptoms and it was just like, you know, for example, what’s a trigger finger? Why is my finger stuck? Like I’ve – what is that, you know? And other weird things that were going on. So just to confirm that what I was experiencing that was part of the disease. So I think for me it was about understanding what is the disease and then understanding that the disease progresses so it’s not like the disease goes forward, and then you can go back in time to how you were or who you were. And I think for me, the hardest thing was to mourn the fact that the life as I was experiencing it was no longer there. So it was about putting understanding that that is done and looking forward to say okay, what is life now? And when I talk to others who have also chronic illnesses, it’s really interesting because some people when I listen to them it’s like they want to go back, and they’re mourning the life that they left, and they keep wanting to go back to it. And I think when we talk about a low disease activity, low disease activity doesn’t mean you’re going to be come, the way you were, you’re gonna, you’re gonna go back. The disease is where it is; you can’t go backwards. And if you keep trying to do the things that you did, when you didn’t have the disease, you will constantly be sad and angry and disappointed. And so for me, what was really important is sort of recognizing that who I was then but ahead of me, there’s a bunch of things that I can still do. And so rather than focusing on the “I can’t do this,” it’s more, “Okay, What can I do?” And really sort of look forward and say, okay, how do I shift what I do, how I do it, so that I can be more fully embracing of what life is, in terms of what’s ahead of me? An important thing that I did, especially in the early stages of my disease was I was working at the time in a job, that was pretty high pressure. And I realized that I wasn’t able to sustain the pace of the work. My mind was great, but the body was just not following. And so you know, I made the decision at that point to change career paths, that was an important decision point, in my head, in my life because I decided at that point, it was more important to make Sure that my body was okay. Because if we don’t have the body, we really only just have one, I’m not going to be much used to anybody. So I had made the decision at that point. That was before I had my son, because I needed to make sure that I could start to feel better, that I could start to reimagine a life where I could better, better support myself and my body, and my disease, and really contribute to all those things that I wanted to. You know, life is not just living; it’s about feeling like you’re contributing to your work. It’s about having enjoyment with your family, with your friends, It’s about participating in patient activities. It’s important to feel like you’re contributing to life and making sure that you know what that is is important. So just to come back a bit to your question around what is remission or lower disease activity, I think it’s thinking about what are those things that are important to you and are you able to do them in a way when you’re feeling okay enough to do those things in the way that you want to? So for me, it’s not a particular goal. But It’s like a like a specific measure that I can say, yes, I’ve hit that. But I can tell if I’m in a good place, if I’m able to do all the things that I would like to do: deliver on my objectives at work, if I’m able to spend time with my family and friends, if I’m able to do those physical activities that I enjoy, if I’m able to contribute to doing those other things that I’d like to do that are important for me. So for me, it’s really a measure of that. But like I said, it’s about where I want to be. And it’s about letting go of what it was. And I think that’s the important measure, is looking forward and not looking backwards.

Adam Kegley  14:22

That’s a really good point, I think. And as you said, what helped you most was to kind of look forward and not look back. And I think that’s a great message because it also speaks to things that you could maybe do now or in the future and maybe you couldn’t do them back then. Or maybe you could, but you have to adjust to a different way of doing them now, or maybe a more quote unquote, “safer way” to do them now that responds better to your body. And I also know that one thing that might have helped you is being very active, and of course, carefully, but it’s incredible that you kickbox still after multiple shoulder replacements. And I was wondering if you could share a bit about how you balance being active while managing your condition. I know for some others it may seem – or be – a daunting feat in and of itself. And I wonder, you know, in addition, what advice you might have for others looking to maintain or achieve a more active lifestyle while managing a chronic illness.

Nathalie Robertson  18:48

Absolutely. So yeah, I absolutely love kickboxing. But as you say, it is something that I am very careful with. I’ve gotten big stares from my surgeon when I said I did that, but I said I didn’t hit anything. And I’m really – it’s more about the movement on that particular shoulder. Because as you said, I did have my first shoulder replacement in 2006. But I had a follow up when in 2014. Any joint replacement is really important. So I’m doing everything I can to make sure that I can maintain that. And one of the best ways actually is to have really solid muscle around the joint, you know. What do I do? I’m very careful about the exercises that we do when we’re kickboxing. Obviously no impact on that particular arm. And it’s about thinking of those things that you can do. So, as I said, I was lucky in that for me, most of my issues have been in the shoulders, others and might be in the wrists or in the feet or in the knees. So in those cases, I think it’s very personal in terms of what you can do. Swimming is an excellent activity. I did some of that. What I realize it’s a little challenging because I can’t swim quite the same way. So it’s not exactly the same but for people who if let’s say it’s your ankles, swimming is a great activity, right? So you need to find the thing or the activities that you can do that don’t hurt you more. And I think that’s the measure, is if you’re doing something and it hurts you more than it gives you benefit, then I think you need to think about is that the right activity for you. For me, bicycling is something that was great. I mean, I didn’t have any issues with my legs, or my hips or anything. So that was great. I did a lot of bicycling with my son when he was younger, you know, lots of walking, that’s low impact. And it’s great to keep moving. And one of the things that’s really critical, and it’s proven everywhere is, the less you do, the more you lose. So if you don’t use it, you’re gonna lose it. And exercise is important for so many things. It’s important for the body. You need to maintain flexibility; you need to maintain some strength. It’s important for your heart, it gives you endorphins, when you – and this is really important for just the positive outlook. And that’s one of the reasons why I actually really enjoy the kickboxing. It’s, yes, it’s the physical exercise, but you feel so good after; you get the endorphins. It’s like coming back from a big bike ride. And it’s just, it feels good. And we need to find those things that bring us joy, and the physical activity is something that it is an important part of our overall health, you know. Mental health is there and this contributes to that and obviously contributes to the physical health as well.

Adam Kegley  21:12

It definitely does. I think what you said, it really rings true with me as well, you know. It’s not necessarily about the activity itself. It’s about how it makes you feel afterward or during as well. And sometimes there’s nothing better than that high of coming off of a good kickboxing session maybe or a bike ride, I know I can identify with that, swimming. It’s really about finding what works best for you. And depending on your movement abilities, period, there could be something. And I think that’s really, I think what you pointed out, it’s a really beautiful point. And maybe with that being said, how do you think people can work with their healthcare professionals to define or redefine their goals, you know, when they’re kind of readjusting their life, making lifestyle changes that could help and to not give up on receiving the right treatment.

Nathalie Robertson  22:03

So I think this is where It’s really important to bring to the table where you are at, because that’s where the physician or your specialist or your healthcare provider might, they won’t know that. So they’re going to come at it from a, you know, their research, their knowledge, what they’ve read. But you’re the person; you’re the one who’s living through this. So if you say, and remember, I had this one conversation with my surgeon after my shoulder surgery, and I said, you know, “What should I do?” And he says, “Oh, do this.” But then my question should have been: is there something that I shouldn’t do? And in retrospect, I said, oh, I would have gotten a different answer, because one was limiting, and the other one was not limiting. So I think it’s important to come at it to say: This is what I’m intending to do. This is what I think I’m going to get out of it. Do you have any concerns with this particular approach? But at the end of the day, it’s your choice, right? But that’s where I think we have a responsibility to go into the conversation to say, this is what I’m trying to do. This is where I’m trying to go. And everybody’s different. Everybody’s pain tolerance is different. Everybody’s endurance is different. You know, we’re as different as there are people around us, right. So everybody will be able to do things differently. And I think, you know, to ask the physician for what’s the prescription for them, that’s putting a lot on their shoulders. And that’s where, you know, they can tell you from their medical experience, medications or maybe physical things that maybe really you shouldn’t do. But then I think you need to take that with a grain of salt and say  okay. If let’s say, people will say, oh, you should do yoga, right? It’s easy on the joints. In my case, yoga doesn’t work, because I have to be on my wrists and my wrists hurt. So that’s not a great exercise for me. So I think, again, you need to take what people are telling you, but I think you need to assess it. You need to determine how that meshes for you and monitor and say, okay, then try some things. I think you need to see how you’re managing, I think you have to be very much in tune with how your body’s feeling, you know, is – are you feeling worse? Are you feeling better? How’s your mood? How’s your health? How’s your body? Are you hurting? Are you not hurting? You know, is there a negative aspect to what you’re doing? And it might be different, you know, in a day, a week, a month, a year, but I think being constantly in tune with how your body is doing in relation to what you’re doing. And if something’s off thing you need to adjust, but you have to be very much in tune. And you know, if there’s a time where I’m not feeling well, I’m not going to push myself because I know that if I’m overtired, and I – let’s say – go to kickboxing, the chances of me hurting myself are too high. And so that’s where you make a choice in saying you know what tonight I’m just not going to go because it’s more important that I don’t go. It’s the same thing as sometimes you need to make the decision to say, you know what – and I had to do this not too long ago –  you know, we had plans with friends and I said, I gotta bail. Like, I was so tired. I just, I couldn’t do it and knowing that your friends and other, you know, people who love you will accept that. That’s part and parcel, and sometimes you just got to decline. But you need to not be angry with yourself, you not need to be not disappointed with yourself. You just need to say, gotta roll with it and say this is okay. This is today, but tomorrow is tomorrow and it’s a different day!

Adam Kegley  22:03

That’s right. That’s exactly right. I think in a way – and to sum that up a bit – is you know, everybody’s body is different, just as everybody is different, right. And that means everyone’s road to remission is a bit different. And we talked about kind of how your health care provider plays a role in your health and how people can but let’s also talk about how the places we live, you know, the countries or provinces or states we live in can have an effect on how we experience life, and can influence our experiences and day to day life, especially when managing a chronic condition. So I’d be curious to know if you think that living in Ontario played a role in your journey with rheumatoid arthritis, you know, time to diagnosis, your access to treatment options, etcetera.

Nathalie Robertson  25:13

Absolutely. So I live in Ottawa and we’re lucky in this part of the province, we have access to specialists. Having worked in the healthcare related field, a little bit, you know, it, you know that it isn’t the same depending on where you are in the country. If, let’s say, I was living in rural northern Ontario, my time to diagnosis may have been a lot longer. But I think if you are in a large urban center, you are in a better position. I wish it was different. I’ll talk about the pandemic, and I think the one silver lining on that one was, it really did push the availability of being able to access health care remotely. I’m hoping that with the advances that we’ve made from a technological standpoint, that, you know, in the years to come, continue to make use of that technology to enable people wherever they live, to be able to access a specialist, to be able to access the care that they need to get the treatment that they need, because it really is life changing.

Adam Kegley  26:53

It’s such, such great points, actually, and I think it kind of goes back to what you mentioned earlier about advocating for yourself, you know, to receive the best possible care. And sometimes even advocating, some people might feel like they’re being asked to do all of the advocating for themselves. But there are also other people out there, if someone is not feeling up to that, you know, on a given day or a given month, or longer than that, there are also other people out there, maybe living with the same conditions that are up to the task, and that are happy to help. And I’d be interested to know briefly how you think advocacy has helped shape your journey. I know you worked with the Canadian Arthritis Patient Alliance, or CAPA, and partake in the wonderful support and advocacy they do for others. So maybe you can expand on that?

Nathalie Robertson  27:36

Absolutely. So I think organizations like CAPA plays such a critical role to ensure that the message of the patient perspective is taken into account, and the work that CAPA does not only to make sure that the patient voice is heard in the health care sort of machinery, but also giving patients information tools to better understand what is the disease, give them tools to have an informed discussion with their physician. What it – what kind of research is available, and where they can go, you know, how they can really sort of be advocates for themselves and how they can actually learn to have a voice, you know, and participate in training. So I think it’s such a critical role, and CAPA is an organization, it’s run by patients, it’s for patients, it’s to create a voice for patients. And I can’t say enough about the importance of the work that CAPA does. And there are other organizations in Canada and elsewhere, that also do help provide that voice and that support. It’s just so critical. And it makes you feel like you’re not alone in this big sea. Because that’s sometimes – you know –  when you’re at your weakest, that’s how you’re feeling: just the world’s a big dark hole, and you’re not sure how you’re gonna get out of it. And when you can find some support and some information, it just makes it all come together, and you realize that there is a community out there, and they’re there to support you.

Adam Kegley  28:55

That’s exactly right. It’s exactly one of the many reasons why we love to collaborate with CAPA, with so many other organizations in Canada, why GHLF is doing work in Canada and around the world and doing a podcast like this to put a spotlight on how people might try to achieve low disease activity or remission. It’s – this is so important. And it’s to give voice and to give platforms to patients when they may not have had them before or especially, like you said, when they’re feeling in that hole, or when they’re feeling like they can’t advocate for themselves. They can lean on others – who might actually be patients – who are ready to do that, you know. And I just can’t thank you enough for sharing all of this, Nathalie. We really appreciate it, and I know that people out there listening will appreciate your willingness to share your story and advice. And actually, if you’re willing to offer some parting words of wisdom for all the patients listening, especially those who might still be in an early stage of their journey, could you share three words with us to give them courage to continue onward to seek the best possible treatment you know? As a fellow patient, what would those three words be?

Nathalie Robertson  29:59

Three words. That’s hard. I would say: patience with yourself, being kind with yourself, and looking ahead, I’m going to add a fourth one: be informed.

Adam Kegley  30:12

There we go. Couldn’t have said it better. Thank you so much, Nathalie; we really, really appreciate it.

Nathalie Robertson  30:17

My pleasure. Thanks for having me on the show.

Adam Kegley  30:22

Thank you for joining us on Remission Possible, the podcast where we explore the path to low disease activity and improved well being. We hope the stories, insights and guidance we’ve shared have inspired and empowered you along the way. This podcast was made possible with support from AbbVie Canada. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us.

Narrator  30:54

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.

Angela Degrassi  00:13

Welcome to Remission Possible, the podcast dedicated to guiding and supporting you on your mission to achieve low disease activity. We understand this challenge wasn’t something you asked for. But remember, you’re stronger than you think and you deserve the opportunity to regain control and live your best life. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. In today’s episode, we have the privilege of hearing from Jed Finley, a patient living with Ankylosing Spondylitis, AS, a type of inflammatory arthritis that affects the spine and other joints in the body. Despite being diagnosed with AS at a young age, Jed has refused to let his condition limit his life. He’s an active advocate for the arthritis community and uses his experiences to educate others about the challenges and triumphs of living with a chronic condition. Whether you’re a patient in the early stages of your journey, or someone looking for inspiration and motivation, this podcast is for you. So join us on this mission is we empower you with valuable insights and tips to break free from the cycle of pain and anxiety and ultimately bring you closer to achieving low disease activity. It’s time to rewrite your story because remission is possible. I’m Angela Degrassi research manager for patient centered research at the Global Healthy Living Foundation, and I’ll be your host today. We’re joined by our guest, Jed Finley who is an ankylosing spondylitis, patient and advocate. He’s the founder of Living with Ankylosing Spondylitis, and was one of the stars of creaky joints web series Backstories, and My Back is Killing Me. Thanks for joining us. Hi, Jed.

Jed Finley  02:05

Hi Angela, thank you so much for having me on.

Angela Degrassi  02:07

I’m so excited to talk to you. There are many remarkable parts of your story. Are you ready to dive in?

Jed Finley  02:12

Let’s do it. Let’s dive right on in.

Angela Degrassi  02:14

Okay, so let’s start at the beginning. Can you tell us about your diagnosis? When did you get diagnosed and what was that process like for you?

Jed Finley  02:22

So I was diagnosed with ankylosing spondylitis in 199 when I was 12 years old, and I had been an athlete, I’ve been very active. I knew what physical pain felt like I knew how you’re supposed to feel after playing a game of ice hockey. But then I started waking up with this pain that I’d never felt before that was in joints that have never been effective before and I was tired. And I was most of all, I was creaking and cracking like someone who was way older. So my parents, they noticed something was wrong. I went to my pediatrician, I’m sure. And he was like, yeah, you should probably go see your rheumatologist. And typically patients have to wait for months and years to get a diagnosis with axial  spondyloarthritis or ankylosing spondylitis. But because of my young age, I got my diagnosis rather quickly, because there’s really no good reason for a 12 year old to feel like they’re 50 or 60 or older. So yeah, I was diagnosed, but unfortunately, at the time, there was not a lot of treatment options for someone my age. Now there’s tons of options. And so the official diagnosis was you have AS, there’s not much we can do about it, try to live your best life. And that’s the way I live for many, many years after.

Angela Degrassi  03:34

Yeah, that sounds like it must have been a very discouraging diagnosis for a 12 year old. Can you share any strategies or coping mechanisms that have been particularly helpful in maintaining a positive mindset and staying resilient in the face of AS?

Jed Finley  03:52

Sure. For me, I like to keep physically active. You know, a spondylitis is a disease that kind of takes over when you’re at rest. And you know, you’ll feel your worst symptoms in the morning and then with physical exercise, things typically get better. For many years, I ran cross country, and that was my main sport and I could run 10 miles, I could feel fine. I was a lot stiffer than others my age, and my coach was always like loosen up and I was like, I can’t! But I tried to stay physically active. It wasn’t until I was in college, also still running cross country and I broke my ankl and that was the first time I took a break. And that’s when my AS finally caught up with me about 10 years after diagnosis. So I like to stay physically active I mow the lawn, I do yard work, when the weather’s nice, I like to go for long walks and I still like to get out there because that mental side of just going out into the world and feeling free, that helps me so much. I would say that I would much rather hurt because of something that I did like you know pushing it a little bit too hard, then hurting just because my body hates me. I’d rarely do it to myself. Yes, I will hurt after I walk for five miles guaranteed. But It’s a better hurt than just sitting down and saying I didn’t do anything, why am I hurting?

Angela Degrassi  05:10

Right on. Yeah. Well, thank you for sharing that. Tell us a little bit about how you went from struggling to get that diagnosis as Jed, to managing your condition and supporting the chronic illness community like you do so well as Jedi.

Jed Finley  05:27

Very nice. I like that. I mean, like I said, I ignored my condition for many, many years, because that’s what I thought the only option was after one to that rheumatologist, I didn’t do anything to treat it. I just kept trying to stay active stretching, living my best life as possible. I never thought that there were any other options. So after getting used to ignoring my symptoms for so long, and then finally it hit me as like, okay, so this is part of my life. This is something that I do have to live with. So it was around 2007, Facebook had just introduced groups, I thought, well, I’ve got AS I have never met anyone with AS, but I bet there’s at least one or two other people out there. I had no idea just how many people you know, I thought, yeah, it’s a rare disease, sure, maybe 10 or 12 people, but I’m going to find them. So I created the Facebook group living with ankylosing spondylitis. And this is a way for spondees to get together, share their you know, their treatments, share their stories, what works for you what doesn’t work, just provide support to one another. I love being a source of information, but be most of all a source of support. I am living this life. And I would say that my AS gives me pride and purpose. You know, I’m not ashamed of my disease and I like to think that it has given me a whole nother area of life where I can help people and help out and the other people may not have that experience. I realized, wait a minute, there’s a whole world out there that I could be a part of and I was like, that’s perfect, that is the meaning of life, you know, right there. Hakuna Matata. Now I host a support group in St. Louis. But anything I can do to help other people. That’s where I get my joy. That’s how I became the Jedi.

Angela Degrassi  07:05

Well, that’s really amazing. And I really just lit up hearing you talk about the Facebook group and thinking you might find one or two other people out there. How many people are in your group today?

Jed Finley  07:16

I think two years into it, I had still less than 100 people. Now we’re close to 60,000 people and the moderators and I we go through at least 200 new posts every single day. People asking questions, and have you tried this treatment? And Has anyone experienced this symptom before? So not only does it allow me to reach out and help other patients, but it helps the members of the group also share what they know. So we all get to be little advocates.

Angela Degrassi  07:42

You’re doing a great thing, Jed, that’s really awesome. Let’s talk about remission. What does the term low disease activity mean to you? And how does quality of life play a role in this context?

Jed Finley  07:54

You know, whether that’s AS or that’s fibromyalgia or any other chronic condition that people may live with, you want that low disease activity. So is my condition keeping me from enjoying certain activities? If my condition is allowing me to actually enjoy things, to me, that’s the definition of low disease activity, where you can live life yes, you still have the condition. There is no cure for ankylosing spondylitis. You know, It’s gonna be there forever and ever and ever, you know, medical science willing. But yeah, if we can live our life to where we want it to be. I think that’s definition of remission.

Angela Degrassi  08:32

Right. And is remission, a question that comes up often in your community?

Jed Finley  08:37

Every once awhile someone will ask and It’s usually a newer patient asking like, do people ever experienced remission? Sometimes, I think for some people who have been living with AS for awhile, remission kind of turns into a dirty word, you know, like, oh, you said the R word like remission. Oh, honey, you think that’s you’re gonna get to remission? What it is, is hope, you know, like, we can hope that our condition will get better, we can hope that you know, we’ll have some low disease activity, sometimes you just have to be there to celebrate whether you get one day of quote, unquote, remission, we like to share that saying, like, there is hope, you know, I mean, yes, it may kick you back the following day. But when you have those days, those are golden opportunities. Some people say in my group that, well, you know, I was feeling good, so I decided I was gonna go paint my house, and now I’m paying for it. But now you have painted house, you have to take those small victories. We all live a different life, but we take those opportunities, you know, to do the best that we can.

Angela Degrassi  09:35

Right. Yeah, that’s interesting. Everyone needs to go with their own pace. Within your group is the term low disease activity more commonly used?

Jed Finley  09:43

I think, we prefer to say just good days. Maybe  saying the word remission or low disease activity, maybe that is feel like maybe you’re pushing too much. I know some people who they’re afraid to actually announce that they’ve had low disease activity because they think that that black cloud of AS is right there on the horizon and just waiting for you to say those words.

Angela Degrassi  10:05

Right. And how do you and your doctor work together to set expectations and define remission? In a CreakyJoints video series, My Backstory, that you were a very special guest in, you say, don’t ever leave a doctor’s office unsatisfied. Can you share if you’ve faced situations like that recently, and what happened?

Jed Finley  10:26

So fortunately for me, whether It’s not that I’m just as world famous as I sometimes think I am, it could also just be my confidence. But for the most part rheumatologists that I’ve had, they recognized my expertise, they recognize, like what I do, and I was telling my at least support groups, I’ve been around here, I’ve learned about this, I’ve learned about this, I come in with a journal saying, hey, Doc, here’s what I’m experiencing. They go, oh, well, you really know what you’re doing. I ended up with a really great rheumatology practice where you see one doctor, but you’re typically seeing everybody. And so It’s this big team that works together, and they celebrate my experience and everything. So yeah, I mean, for the most part lately, I have not had to convince them of anything I have not had told them, you need to stay around longer, because I want to tell you, they like to listen to me. I think if you come in prepared, they’ll be excited to hear more about what you have to say because being active patients, honestly, I think doctors enjoy that. You know, It’s oh, someone we can talk to, we don’t have to take our time to explain stuff. They know what they’re talking about. So yeah, I advise going to a rheumatologist, bring your diary, bring a list of symptoms, a list of medications, be prepared to share a story.

Angela Degrassi  11:34

Yeah, that certainly sounds like a five star experience to me. And I hope that many of our listeners get to experience that. How many different treatments have you tried? And what was it like switching from one therapy to the next?

Jed Finley  11:47

So in the world of biologics, which if your listeners don’t know, biologics are the kind of cornerstone treatment for spondylitis, it slows the progression. And while there is no cure, it’s kind of the closest thing because it may not stop disease, but it slows it down greatly in a lot of people.  I have been on three of them and I was really loyal to my first one, I believe it was probably four years that I was on it. And it was still working great. But the second one, I knew what good actually felt like I know what a good treatment was supposed to feel like it was not doing everything that it should have. And some people will say, give it a few months. But honestly, for me, after about two or three months, if you know you’re not getting better, there’s probably a good chance that It’s not going to get better. I know a lot of people who stay with a treatment way too long due to brand loyalty, but you won’t know how well it’s gonna work until you give it a try. You know, maybe someday there’ll be this great blood test where they just say this is the perfect treatment for you. But unfortunately, they do not have that yet. It’s a lot of trial and error. As for other treatments, I’ve been on every single NSAID and DMARD and all those other drug classes that they use to treat spondylitis and other arthritic conditions. I tried them all some of them work. Some of them didn’t. I think eventually you just got to have to listen to yourself and say, am I doing better than I was a month ago? If the answer is no, maybe It’s time to switch.

Angela Degrassi  13:14

And what advice do you have for others who may be struggling to find the right therapy or who just settle because they don’t want to deal with trial and error?

Jed Finley  13:22

So unfortunately, I have to say that trial and error is the best that you can do. You do need to give it a try and see if it works. If it doesn’t bend, just move on. Move on to the next one. There’s no shame in that. There’s unfortunately a lot of people I meet through my experience in support groups where nothing I mean, nothing works for them. And It’s usually due to other conditions that they might have. Because chronic illness is Lay’s potato chips. You can’t have just one. You know, you got to collect a few for example, like I have ankylosing spondylitis, I also have Lyme disease and possibly one or two other ones that I haven’t found yet. But you just have to kind of sit down take a look at it. Am I getting better? If not, move on. If I am, stick with it. But I will say that there’s new treatments being invented every single day. When I was diagnosed, there was nothing to do, at least for a 12 year old. Adults had a few options. But 12 year old nothing, there’s always hope, you know, move on, move on, move on. Keep trying. But most of all, just keep communicating with your doctor because overall you can learn a lot from fellow patients, but they’re the final say in what you actually try. So, make a journal, write down your symptoms, tell them exactly how you’re feeling. And don’t just think well, I don’t want to waste their time. Again, they work for you not the other way around. Don’t let them waste your time. You’re not going to waste their time.

Angela Degrassi  14:42

That’s great advice. Thanks for that. Can you share a specific moment or experience that stands out to you on your treatment journey for example, a day when you felt great and you know that you reached low disease activity?

Jed Finley  14:57

So if I am able to do go out and do yard work because right now I live on a farm. I got I have three acres to work on. It’s a small farm, but It’s a farm. If I can go out and I can mow the lawn and trim some bushes and rake up, if I could walk, like, do all that and then cook dinner and maybe walk five miles the following day, I’d say I’ve got some low disease activity, you know, but you never know until you try.

Angela Degrassi  15:22

We’re hoping lots of fellow patients hear this podcast. For all the patients listening who might be in early stages of their journey, if you had three words to share to give them courage to continue to seek the best possible treatment as a fellow patient, what would those words be?

Jed Finley  15:39

It would be activity, perceptiveness, and just being true with yourself. Just be the active patient, be active, tell them, hey, Doc, here’s how I’m feeling, and here’s what we’re gonna do. Perceptive is when you’re actually paying attention to how you’re doing. You noticed, you know, when I started this medication a week ago, and I’m already feeling better. Two weeks ago, I’m still feeling better. No one knows your body better than you. So if things are going well, then you know, you found the right treatment. But Be true to yourself. Don’t hide how you’re feeling. You know, if someone asks you how you’re feeling, tell them I’m feeling terrible. Hey, Doc, it’s not working. What are we going to do now? You’re not going to bother your doctor, I promise. Just be truly yourself. You know, don’t hide who you are.

Angela Degrassi  16:23

Right on. And I’m just kind of thinking back to the three words you were saying that did really resonate with me talking about being truthful with your doctor and speaking with them. No one can really replace your doctor and you have to be true with your doctor too. Don’t be afraid to have those conversations. Right?

Jed Finley  16:41

Exactly. Yeah. Don’t ever, ever, ever hide yourself from your doctor. You’re not doing them any favors, and you’re definitely not doing yourself any favors. If you’re feeling bad tell them you’re feeling bad. If you say them, I’m okay, you know, whatever, I’m living my life, they’re gonna think everything’s fine and that’s how you get that five minute appointment where they said,  alright, well just keep doing your doing see in three months. Be true with them. Say nope, Doc, I’m feeling bad. Let’s sit down. We’re going to talk this over and yeah, be true. 100% Don’t ever hide yourself.

Angela Degrassi  17:10

Well, Jed, What a great and inspiring way to end this episode. Thank you so much for taking the time to answer our questions and share about your journey. I wish you many great days ahead.

Jed Finley  17:22

Well, thank you so much. And thank you so much for having me on. You know, It’s always a pleasure to share my voice with Global Healthy Living and CreakyJoints. And just everyone who’s listening, if you have AS, go out, talk to a rheumatologist or get a rheumatologist. Get on a treatment that works for you. And then yeah, like we said, be true to yourself, you know, because you’re the only person you can be.

Angela Degrassi  17:44

I love that.

Angela Degrassi  17:46

Thank you for joining us on Remission Possible, the podcast where we explore the path to low disease activity and improved well being. We hope the stories, insight and guidance we’ve shared have inspired and empowered you along the way. This podcast was made possible with support from AbbVie US. If you like what you’ve heard, be sure to rate our podcast, write a positive review and spread the word by sharing with your family and friends. It’ll help more people like you find us.

Narrator  18:18

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.

JP Summers  00:12

Welcome to Remission Possible, the podcast dedicated to guiding and supporting you on your mission to achieve lower disease activity. We understand that this mission wasn’t something you asked for. But remember, you are stronger than you think. And you deserve the opportunity to regain control and live your best life. And each episode will share uplifting stories from patients succeeding in their mission, exploring how patients and doctors can collaborate to better understand the optimal course of treatment for various chronic conditions while keeping personal goals and lifestyle choices in mind. Today, we have an open and honest conversation with a leading rheumatologist about their motivation to help patients and how to collaborate with doctors to prevent subpar treatment will discuss remission versus low disease activity and provide insights to help you better navigate your journey. It’s time to rewrite your story because remission is possible. I’m JP Summers, patient advocate and community outreach manager at the Global Healthy Living Foundation and your host today. We’re joined by our guest Dr. Philip Meese, Director of Rheumatology research at the Swedish Medical Center, Providence, St. Joseph Health and Clinical Professor at the University of Washington School of Medicine in Seattle. Thanks for joining us. Hi, Dr. Meese. We’re happy to have you with us today.

Dr. Mease  01:36

Thank you very much, JP, I’m glad to be here.

JP Summers  01:38

I must say Dr. meese as someone living with rheumatoid arthritis and migraine. I’m especially excited about today’s discussion. So let’s dive right into the episode with an important question. I want to ask, how do you define remission and low disease activity for your patients? And how do these definitions vary for patients? For example, for someone with axial spondylitis versus rheumatoid arthritis versus psoriatic arthritis.

Dr. Mease  02:03

JP, It’s very important question and something that has been evolving over the last several decades as we have developed and used more and more effective medications that can actually get a patient into what I’m going to define in a moment as true remission or low disease activity. Increasingly, within rheumatology, now that we have more successful therapies, we are wanting to try to quantify where a patient is, what’s their level of disease activity, and can we truly get them into remission? In the old days, when we didn’t have effective therapies, we weren’t paying so much attention to this, we were really just trying to get the patient to be as comfortable as possible. And try not to cause too much damage or safety problems with any of the older therapies that we used to use. Now we’re really trying to treat to target and the target is either remission or low disease activity. So how do we define these? Well, I define these as clinical remission, imaging remission, and molecular remission or low disease activity on each of those levels. Clinical remission would be getting to a state where your symptoms of pain fatigue stiffness are essentially gone. And if we were to measure your physical function on your quality of life, those would be back to more or less normal, we will often accept low disease activity as being very close to true clinical remission. But I also mentioned imaging remission and molecular remission. What does that mean? So sometimes a person can have absence of symptoms. But when we do careful advanced imaging, say, of joints or the spine, we find that there is MRI scan, or ultrasound evidence of lingering inflammation in various areas. And so getting that to be gone would be getting a person into the state of imaging remission, as I call it. And then finally, there’s molecular remission. And that would be if you go into a site of inflammation with say, a biopsy needle of the lining tissue of the joint, or doing a skin biopsy and finding no evidence of cells or inflammatory molecules that are part of the pathogenesis of these diseases. That would be the ultimate goal of getting the disease completely gone from a molecular point of view. Of course, that’s not practical to do and so we really rely mostly on clinical and possibly imaging resolution as our goal of therapy.

JP Summers  04:46

Thanks so much for breaking that down for us. So that leads me to my next question. Can you please talk about how you measure remission and different types of chronic disease?

Dr. Mease  04:56

So for example, a person with rheumatoid arthritis there dominant issue is the painful joints and the physical dysfunction and impaired quality of life that arises from having painful joints. One measure that we use is something called the CDAI score. And that’s constituted by an assessment of the tender and swollen joints that the patient is experiencing at that moment. So that’s physical exam as well as questioning a asking a question about how their rheumatoid arthritis impacts them globally. And then there’s a physician global assessment as Well. And all these go into a numeric score. And there are various thresholds for What is remission, What is low disease activity, What is moderate What is high disease activity. With psoriatic arthritis, there are more clinical domains that are involved. Besides painful joints, the patient will have psoriasis of their skin, they may have nail disease, they may have problems with their spine. And another area is something we call enthesitis, where tendons or ligaments insert into bone. Inflammation occurs in those places like the Achilles tendon insertion. So with PSA patients, we have to have a broader set of questions that get asked a broader physical examination, and then potentially broader imaging or laboratory evaluation to really understand whether the patient is in a state of remission or not. And there are several measures that have been developed for this including something called the minimal disease activity criteria, which includes, for example, skin and […], or the DAPSA is score, which is really focused a lot on joints, but also a clinical measure of inflammation called a CRP. And then in the Ankylosing spondylitis or axial spondyloarthritis patient, there are different set of questions, we’re asking a lot about back pain, morning stiffness, patient global peripheral pain, because they might have peripheral joints involved, as well as CRP. And all of these go into a measure called the ASDAS score, which has different thresholds. Now you notice that I’ve been focusing a lot on these measures. And I suppose that’s because I’m a measurement guy. And I am really trying to quantify the patient’s experience and get them to what I know is a low threshold. Why? Because we’ve done lots of studies that have shown that these low thresholds are correlated with really good outcomes, better function, better quality of life, less damage progression as we measure by imaging techniques. So all of these are really good.

JP Summers  07:43

Well, let’s talk more about the patient and quality of life. How do you incorporate their personal goals into the treatment plan while also striving for low disease activity or remission?

Dr. Mease  07:53

So with a patient may come in with a completely different idea about What is remission or low disease activity for them getting into remission may mean being able to go to their son’s soccer game, or it may mean being able to do some manual work, that is part of their jobs that they couldn’t do before. So there might be completely different targets of treatment that the patient may have. I also want to know, What do you want? What is your goal? What would you most like to regain in your life? And this may be something as simple as what I mentioned earlier getting to their child’s soccer game, or it may mean for example, less vulnerability about the future, when I’m truly in a state of remission? Will I not have disease flares? If I’m truly in a state of remission? Can I decrease my medicines? So I’m less worried about side effects? Will my family grow tired of the fact that I’m in pain and not able to do functions with them? So this all needs to be woven into the discussion about what true remission or low disease activity is? The root of all of This is education, and really having shared discussion about what the patient is feeling and what the physician is observing, both by questioning the patient and examining the patient, and then sharing that and saying, Okay, we can expect to have improvement in This area, but maybe not in This other area. And so we have a more realistic idea of What is going on each time we visit.

JP Summers  09:35

You know, I’m so thankful for the open and honest relationship I have with my own RA specialists. So let’s talk about shared discussion. How can doctors ensure that they’re not just looking at clinical measures, but they are also taking into account the patient’s personal experience with their disease?

Dr. Mease  09:50

So It’s important to step away for some time during our visits from these measures and to what’s the patient experience What is going on with you? How is the disease impacting you? Is it causing you to feel depressed and anxious? Are you not able to do important things with your family and making sure that you’re weaving all of that discussion into the ultimate decision making about are we okay with keeping therapy as it is? Or do we want to move on or change therapy approaches in some way or another or bring other resources to bear. For example, if a person has as part of their axial spondyloarthritis, condition, uveitis and inflammation of the eye than we need to know about that we need to hear about it from the patient, and then make sure that that’s being adequately treated or bringing an ophthalmologist into the picture. In the patient with psoriatic arthritis, there are two there’s teamwork that needs to go on working with the dermatologist, maybe a physical therapist who is helping the patient with non medication approaches. So keeping really open to the idea that there’s a village of health care providers that may make the experience more optimal for the patient. So JP, let me turn the table on you and ask what are some specific markers or milestones that are meaningful to you for achievement of remission or low disease activity?

JP Summers  11:23

You know, I can vividly remember there was a follow up appointment with my rheumatologist where I walked into the exam room filling the best I ever had, since my early diagnosis, which was two years prior, I believe, my specialist immediately noted, I did not want to have any issues sitting down or getting out from the chair. And I told her, I woke up the past three months with my body allowing me to shower, reach for items in the kitchen, even put dishes away prep for meals. And I’d have to say the other obstacle that was challenging was the door handles, I was able to open the door without difficulties, both of us smile, but I can tell you, my smile was so much bigger than hers, just for the simple fact that again, the treatment regimen was finally showing some positive results. And I just couldn’t wait to get home and share that news with my kids. And let them know that It’s important for me to be present for their school events, and just to enjoy the day out with them.

Dr. Mease  12:16

That’s terrific. I really appreciate hearing that story. And really illustrates well how important certain life activities are being with your family, being able to do simple things like getting out of bed and getting right into the shower and moving into the day. So I think that that’s such a sign of yes, that should be part of our definition as well.

JP Summers  12:39

Absolutely! You know, being able to share those things with your doctor is so important. Let me ask you, Dr. Mease, how can a doctor and patients establish a relationship of trust and openness?

Dr. Mease  12:52

So I think the most important thing is openness. So for there to be enough trust, friendliness, kindness in the doctor patient relationship, that the patient can feel increasingly comfortable over time to be completely open about all that they’re experiencing and transmitting that to communicate that and have the time in a visit to do so. I know that sometimes this is hard, because if the clinician has a certain time limit to their new patient visit or follow up visit, that’s a constraint. But I hope that especially with rheumatic disease patients, we get to know people over time that ultimately this kind of really open relationship can occur. And I think where advocacy groups can have a role is to teach patients about that that to say really be candid with your physician, let them know what you’re experiencing and feeling. All that goes into their thinking as they’re going through making assessments of the disease, and also kind of setting appropriate expectations. For example, when you start a new medication that’s injected or infused, it’s kind of scary. And wow, This seems very big deal. All of a sudden, I’m injecting something into myself. But then it turns out that over time, it can really work. But the patient needs to know, hey, that may not work right away, it may take three months before the effect really starts to begin to be apparent. And so all of these things are things that can be learned and appreciated with not only discussions with the physician and their nursing staff, but also the patient advocacy groups, which are such an important contribution to the care of our chronic immune patients.

JP Summers  14:38

First off, I will say having an open and honest relationship has been so crucial in my treatment journey. And there are times I feel that maybe I’m constantly nudging the nurse you know, asking more questions, but it’s essential to discuss every physical obstacle and not to forget the emotional impact that your limitation can cause and it’s often debilitating and your medical provider needs to know all these details, whether you’re scared about starting a new infusion, um you know, I hate needles, I absolutely hate them. But just knowing that I have the reassuring of my medical provider and their staff to kind of guide me through that process. And again, It’s just needing to have that honesty. And when you get your provider to help you understand things, it is so huge. And being a patient is something that I’ve learned over the years, it doesn’t get any easier. But it also doesn’t even getting harder. It’s just about finding the right balance. And I feel that I found that balance, again, with just having that discussion, being able to ask questions, and know that they’re going to listen, and they’re going to guide me in the direction I need to go. As a patient, I can tell you firsthand how important it is to work together as a team to achieve remission or low disease activity, it is so easy to feel discouraged and even hopeless. Can you speak to the importance of having a doctor who is invested in our journey and how that can give us hope and motivation, we need to keep trying new therapies.

Dr. Mease  16:08

So It’s, I think It’s very important for the trust building aspect of the doctor patient relationship, or the nurse practitioner or physician assistant and patient relationship. By the way, I just want to emphasize that increasingly Advanced Practice practitioners, like nurse practitioners are an important part of Rheumatology care in this country and play a very important role in that trust building process. So many patients with chronic autoimmune disease will have depression, anxiety, and other emotional burden from the disease, they are less than what they used to be in their own eyes and mind. And they’re really feeling vulnerable. They’re concerned about being a burden to others in their family or in their workplace. And so there are huge social and emotional cost when you have these diseases. And especially if you’re not in a state of remission or low disease activity, if you have subpar experience with your therapies, just think about what you described earlier, when you suddenly not suddenly, but gradually realize, hey, this treatment is really working for my rheumatoid arthritis symptoms. And This smile, you described the smile that went all the way across your face. And that is so important to achieve that level of oh, there’s light at the end of the tunnel, oh, I can get my head above water after plunging into the lake and being down there in the dark. And I’m suddenly breasting above the waterline and getting a big gulp of fresh air. And I feel these moments and especially if we can get them to be most of the time. That’s such a important goal for us so that you can break out of the cycle of oh, I’m diminished. Oh, I’m feeling depressed and lonely and anxious that’s so important and working with your healthcare team to achieve that is I think very important.

JP Summers  18:04

I just have to say that Dr. Mease, I love that head above water analogy, because it really does feel like you’re sometimes drowning. And you know what the symptoms, that perspective does make so much sense. So you’ve touched upon the social and emotional costs for patients who experience subpar treatment, which is an important aspect to consider and their overall well being another crucial critical component of patient care is evaluating treatment options. So let’s discuss the potential risks associated with switching therapies when current drugs aren’t working, How can patients and doctors work together to make the best decisions for each individual case, while considering these risks?

Dr. Mease  18:42

The biggest risk has to do with the hopefully brief period of time when a person is starting a new treatment. And we know it may take weeks to months before it really kicks in. And then leaving behind a medication which either wasn’t working or maybe was working some but just not adequately. So they there’s a period of time where they’ve lost that benefit from the previous medication, even though subpar trying for something better going forward. But there’s that little lag time. So that’s something that we try to bridge with maybe a little use of prednisone or anti inflammatory medications. I think also just making sure that the patient is aware that that could occur, then of course, it’s important to educate the patient about potential side effects that can occur. So I think those are probably the main ones, the period of time of waiting to see if you’re going to have an effect and any new risks that might be associated with that new therapy. But if we’re good and can achieve a better state of treatment with the new treatment, then that’s that’s what we’re aiming for.

JP Summers  19:48

Before we conclude our other guests on the podcast that you may have heard in episode one and two, Jen and Nathalie both have a question for you, Chad, go right ahead.

Jed Finley  19:56

Hi, Dr. Meese! How do you best manage patients who feel they have reached the end of their treatments when nothing seems to work anymore, or who have had severe reactions to NSAIDs and biologics?

Dr. Mease  20:07

Jed, thanks very much for asking that question because It’s one that we face on a regular basis with our patients who have been around the block many times with many different therapies. So as you know, we have multiple medications that we use in the treatment of our various diseases, we do find that some patients may have tried virtually everything yet they break through and start to have more issues going on. So there’s various things that we do. One is, of course, to consider any of the medicines that haven’t been tried in one of those classes. Now, that may only get us so far. And one of the things that’s starting to occur is we’re starting to see combinations of treatments. So adding together two different classes, this is getting more toward what is being done in cancer medicine, where you bring to bear sometimes 2, 3, 4 medications, each working in a different way to get rid of the cancer. And so we’re applying these same principles in rheumatology, and I think we’re going to see more of this in the future. One key point is that we need to establish the safety of putting these medicines together. Obviously, if by putting two together, you get more serious infections. And so we need to make sure that when we’re doing this, we’re really establishing that there’s not a loss of safety when we are intensifying treatment in this way. So I think between trying medicines that haven’t been tried before trying combinations of medicines, even when they’re off label, and then the other, of course, is to make sure that all the symptoms that the patient is experiencing are due to the autoimmune disease, sometimes there can be other factors involved. Like, as I mentioned earlier, if the patient has osteoarthritis in certain joints, that’s not going to get better with the immune moderating drugs that we have. And also there is the condition Fibromyalgia that we mentioned earlier, where if that’s coexistent, then using specific treatments for that is in order. So it means having an open mind open inquiry and just being willing to try.

JP Summers  22:23

And now we have a question from our other guests, Nathalie. Nathalie, go ahead.

Nathalie Robertson  22:27

Hello, Dr. Mies, What do you tell a patient who was scared to try a new therapy or hesitant to switch because they’re feeling fine?

Dr. Mease  22:36

Thanks, Nathalie, for asking it, because It’s really, really, again, very common issue that we face. So let’s start with the person who is pretty new to the disease that they have been diagnosed with, and are very new to the treatments that we use, especially the injected or infused biologic medications. So one of the things that I will do is ask the person, do you have a friend or relative or a coworker who is on one of these medications? And it seems like people know the names of these medicines, people will say, of course, I’ve seen the TV advertisements, and so they have a little bit of a knowledge about it. But importantly, if they have a friend or neighbor, I will say, how is their experience spin and if their experience has been good, for example, if Aunt Sally has said, boy, this changed my life, I’m now able to get back to function. And I’ve tolerated the medicine pretty well. That’s helpful, because then I will encourage the person I’m working with to say, go and talk to Aunt Sally more hear more about her experience with it. What’s it like to give the injection for the first few times, I will often say, hey, I you know, this is a big deal. We’ve, It’s scary to have a new diagnosis like this, talk to you about medicines that you may really be worried about. I encourage you to step back, don’t make a decision today, go home, think about it, talk about it with your family, do some reading and learn more about these treatments, hopefully, from reputable sources on the Internet and make a reasoned decision that you are comfortable with because the worst thing in the world is for you to feel like you’re being pushed or pressured into trying something that you’re nervous about. So this is a way of gradually increasing trust between you and your practitioner. The other thing you mentioned was Nathalie was having to do with switching medications and some of the concerns and issues around that. And that’s a bit of a different issue, because you’ve already started to experience what It’s like to be on a biologic medicine that you inject and so It’s more just the unknown of what this new medication may hold for you. Will it be as efficacious or more efficacious? That’s what we’re hoping for. Will it be as safe or safer again, that’s what we’re hoping for behind that you’re worried will it not? work as well, will it create some new safety issues for me? So again, that conversation with your clinician, what’s been their experience with the medication? What have the experience of others who have switched to that medication been like having these types of open conversations and again, establishing trust with your health care team. That’s so important.

JP Summers  25:22

We’re hoping lots of fellow patients hear this podcast, Dr. Meese, I’m a patient about to embark on a long journey figuring the best treatment for me, or maybe I’m a patient trying not to be discouraged. If you had three words to share with me, to give me courage to continue on as a doctor, what would those words be?

Dr. Mease  25:41

They would be hope, trust and confidence.

JP Summers  25:45

I love them. What a great way to conclude this episode. Thank you so much, Dr. Meese.

Dr. Mease  25:50

And thank you, JP, I really enjoyed this.

JP Summers  25:53

And I will tell you is if I were to walk into your office, as newly or you know, have been diagnosed for several years, everything you said just resonated so well. And I appreciate that. I appreciate the work that you do. So thank you.

Dr. Mease  26:06

Well, and thank you for what you do, very much.

JP Summers  26:10

And to our listeners, thank you for joining us on remission possible, the Podcast where we explore the path to low disease activity and improve well being. We hope the stories, insights and guidance we’ve shared have inspired and empower you along the way. This podcast was made possible with support from AbbVie US. If you’ve liked what you’ve heard. Be sure to rate our podcasts write a positive review and spread the word by sharing with your friends and family. It’ll help more people like you find us.

Narrator  26:40

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.

Adam Kegley  00:13

Welcome to Remission Possible, the podcast dedicated to guiding and supporting you on your mission to achieve lower disease activity. I’m your host Adam Kegley, Associate Director of Global Partnerships at the Global Healthy Living Foundation. We understand that this challenge wasn’t something you asked for. But remember, you are stronger than you think. And you deserve the opportunity to regain control and live your best life. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. In today’s episode, we’ll hear from Racquel Dozier an American systemic lupus erythematosus patient who was diagnosed with lupus in 2004. Raquel has always been an active individual from having qualified twice for Olympic trials in 1988 and 1992, to founding her own lupus support, education and advocacy group called Lupus in Color. A former social worker, teacher and counselor Raquel is currently an author, entrepreneur and true advocate for the lupus community. We will be discussing Raquel his personal journey with lupus, including how her life has changed since diagnosis, the different types of treatments Raquel has tried, her relationship with her doctor, and the importance of self advocacy to receive optimal care, and how she defines and reached her mission and her daily life. So whether you’re a patient in the early stages of your journey, or someone looking for inspiration and motivation, this podcast is for you. So join us on this mission as we empower you with valuable insights and tips to break free from the cycle of pain and anxiety and ultimately bring you closer to achieving low disease activity. It’s time to rewrite your story because remission is possible.

Adam Kegley  02:18

Hi, Racquel, thanks so much for joining us today and being willing to share your story with us.

Racquel Dozier  02:23

Hi, Adam. How are you? Thank you for having me. I appreciate it.

Adam Kegley  02:26

I’m doing well. I’m really, really glad to talk to you today. And if you’d like we can just go ahead and jump right in. And maybe you could tell us a little bit about yourself who you are, where you live, your profession, and the condition you live with.

Racquel Dozier  02:38

All right, well, my name is Racquel Dozier, and I have lived with systemic lupus erythematosus since 2004. I was originally diagnosed in 2002 with rheumatoid arthritis only, since that time when the lupus attack my intestines, that’s when I got the firm diagnosis of SLE. And I live currently in the suburbs of Richmond, Virginia, originally from New York City. So that’s me in a little nutshell. I actually live with several comorbidities, I have type two diabetes, I have rheumatoid arthritis, I have SLE, and I also have a possible Sjogren’s. So we’re just hoping that that doesn’t pop up as well.

Adam Kegley  03:21

Yeah, I’m hoping for you. And I’m hoping today, we’ll get a little more into the bigger version of the nutshell then of who you are.

Racquel Dozier  03:28

Absolutely, absolutely.

Adam Kegley  03:31

Well, with that in mind, actually, we could go ahead and dive right into your journey with lupus I suppose. So we could actually start maybe with your road to diagnosis, what that was like and the early stages of understanding your diagnosis. Maybe you could tell us a little bit about that.

Racquel Dozier  03:46

Yeah, well, like I stated, I was diagnosed with rheumatoid arthritis in 2002. I had just moved from New York to Virginia, and I had a three year old and everything was just going so fast. You know, we moved from New York to slow down some.

Adam Kegley  04:02

Yeah.

Racquel Dozier  04:03

So once we moved from New York to Virginia, I feel like that kind of slowed my body down some for me to see what was happening in my body. While I was living in New York, I was not able to really fathom any type of illness because I was running so much from sunup to sundown. So by the time I moved here to Richmond, Virginia, it became quite obvious that something was not right. I was working as a social worker for foster care children and one day I just couldn’t walk. I could barely talk. I couldn’t move my hands. I could not stretch my fingers. I couldn’t move my legs. Everything was swollen. I looked like I have sausages for hands and feet. I’ll just put it to you that way.

Racquel Dozier  04:44

And once I figured out how to call my husband as I was crawling on the floor and got to the doctor, when they finally came and got me, they were like, oh, we just think that you have rheumatoid arthritis. He took some scans of my hands and my feet he said it is rheumatoid arthritis. But the good thing is that my doctor was proactive in telling me that it could be something called lupus. And when he said that to me, I was like, what is lupus? I didn’t know what lupus was, I only knew of a girl in college that might have passed away from lupus, but I thought it was cancer at first. And he was like, no, it’s an autoimmune condition. He explained it all to me. And he stated, it’s not what it is now. But I want to put that in your head just in case it develops into that. So I feel really fortunate that I had a doctor who was very upfront with me. And he explained to me that it happens more to African American women. So just be on that alert, basically, is what he stated. Two years later, down the line, I had a major flare, I had about four and a half liters of fluid in my belly. And had I not gone into the doctor when I did, I probably would have died once they realized that lupus had attacked my intestines with ascites. That’s when I got the firm diagnosis of SLE.

Adam Kegley  04:44

Oh, wow.

Adam Kegley  06:01

Wow.

Racquel Dozier  06:01

And you know, the doctor comes in like, whoa, I know what you have, I got it, here we go. You’ve got lupus. I was like, yeah, I figured that. He was like, wait a minute, you figured that? Yeah, doctor already told me. So you know, I figured that’s what we were just waiting for it to jump up at me and beat me upside the head. So that was my first real firm diagnosis of lupus. And when I was diagnosed with lupus, I didn’t see anybody in my town. Like I said, I’m in the suburbs of Virginia, I didn’t see anybody in my town that looked like me. I didn’t know anybody that had lupus, nobody came to the hospital.

Adam Kegley  06:41

Right.

Racquel Dozier  06:41

If you have different diseases, they send people in to talk to you, nobody came to the hospital to talk to me. And I felt lost, I felt lost, I felt confused. I felt scared and in that feeling, I always say out of necessity comes creativity. In that feeling I said, I don’t want anyone else to feel this way ever again. No one, I don’t care who you are man, woman, child, black, white, red, brown. I don’t want anybody to feel this way anymore. And I founded Lupus in Color as an online support group that opened up to a local support group, the only one that was here in Richmond for a long time, and now has become an international global organization that we really help people all over the world.

Adam Kegley  07:25

That’s incredible.

Racquel Dozier  07:26

So that diagnosis really was a gut punch for me, because like I was always an athlete,  two Olympic trials, I’ve run I’ve always done something basketball, all these different things. I was running, running, running before I moved, and then all of a sudden, I was stopped. And I had to take that energy and put it elsewhere that would help not only myself, but also others.

Adam Kegley  07:46

I really think that’s quite incredible. Because like you said, you had so much energy and so much you’re going going going all the time and kind of that perfect redirect and funneling that energy into advocacy. I think it’s really beautiful, honestly, because I feel like that initial part of your journey, like you said was you didn’t even know about lupus. So it was learning about the condition and you really had to learn how to then advocate for yourself and creating Lupus in Color, because you didn’t see anybody that looked like you in the area which you lived. So I wonder if you could talk a little bit more than about that experience, how you’ve self advocated to make sure you’re receiving the best care possible?

Racquel Dozier  08:22

I think it was something that was instilled in me from birth, honestly, I was a premature baby. So I had to fight that way all through my life. My mom passed when I was very young, I had to fight through that way. My whole life has been advocating for myself, honestly. And I think that when I got the diagnosis, it made me really think about who I am and what my purpose in life was.

Adam Kegley  08:45

A thing that you touched on, too, was that not only were you self advocating, but you also had a doctor who or have a doctor, who was also going to advocate for you and kind of to you about what you needed to do. Which is great, you know, because I feel like there are a lot of people out there that don’t necessarily have that and don’t necessarily have a good relationship with their doctor. And I know you mentioned to me previously that that really helps you feel cared for and understood and heard, because you’re able to share in the decision making about your path forward, what do I need to do, but what can we do together? And I was just wondering, in that regard, you know, could you share advice for other patients out there on the importance of that doctor patient relationship and working toward their mission?

Racquel Dozier  09:30

Well, I’m going to tell you, the relationship that you have first with yourself is most important. So I had to get that right with me first so that I could have the proper relationship with my doctor. I think that a lot of times we’re given this whole chronic illness issue put upon us we kind of lose the faith in ourselves and put everything into the doctor when it should be a collaboration. So once I got that relationship with myself first to change my mindset think, okay, they’re practicing doctors for a reason. You know, they don’t know everything, they can’t know everything. Nobody knows everything, and you know your body best. So I had to make a pact with myself to say, Look, you have to trust your doctor. But you also have to trust yourself and keep yourself in check so that you know what to ask the doctor, I also have a very supportive husband, who is always there and ready to jump into action. So if I was unable to talk about what’s going on, he would accompany me to the doctor. And it began to become a friendship where literally, I will go into my doctor and say, I’ve got a boil on my butt, can you look at this, and he’s like, whoa, Mrs. Dozier, calm down that’s not my department. But it created such a loving relationship, honestly, between myself and my doctor. And like you stated, I was very fortunate to have a doctor who was willing to be open and honest with me. And I think from the time he asked me the question whether I wanted it soft or hard, I think I set the precedents for him there. And I’ve told him, even at the beginning, I need you to always be honest with me, if I’m doing something wrong, you need to let me know. Because if you’re doing something wrong, if I don’t let you know, my husband will let you know, my doctor knows if my husband’s with me, something’s going on, something’s going on. And he really needs to stop and pay attention. But my advice to people is to really just become a partner with your doctor, yes, your doctor is the professional, don’t do things in a way that is negating his profession. But let him know you understand your body and this is not working, or that is working. And if that doctor is not listening to you, maybe it’s time to find a new doctor. So you really have to start with a friendship, I can go to the gym and see my doctor and he’s like, I’m glad you’re on the treadmill. Next week, you can get in the pool. So a lot of people might not have that opportunity to have that relationship that way. But if you started as a partnership, and not as the doctor knows best, and I know nothing, it really makes a difference.

Adam Kegley  12:11

I couldn’t agree more honestly, I think you really set that up perfectly to is that you really have to know yourself first and get yourself in order before you can really work on that relationship with the doctor. And that doesn’t mean you have to have it all tied up in a neat nice bow. I mean, who of us does?

Racquel Dozier  12:28

Right, right.

Adam Kegley  12:29

With ourselves, but enough so that you can go to that doctor and say, hey, this is what I know about me. This is what’s working, and this is what’s not, and we need to do something about it together.

Racquel Dozier  12:39

Absolutely.

Adam Kegley  12:40

I think that, you can correct me if I’m wrong, but I think that really probably helped you understand how you start to define things in your life and with lupus.

Racquel Dozier  12:50

Right.

Adam Kegley  12:51

And when you were working toward remission, I’m just curious how you then define remission or low disease activity in your everyday life. I know it can be such a challenging goal, and everyone has different definitions and feelings. But I feel like with you saying, you know, okay, I need to kind of make sure I can get myself together. How do you define then remission?

Racquel Dozier  13:11

Okay so, I don’t normally say remission, honestly and the thing about it is that it’s so unpredictable. So I say that it’s always in a silencing. It’s just sitting there waiting for something, to interact with it, whether it be something that I’m doing or something that the atmosphere has done, or just to be lupus itself. So I really define my lupus symptoms being under the radar as a silencing because as I said to my doctor, I asked him, can this be cured? And he said, no, but it can be managed, okay, I put that in my head. So I know that managing something, if I have an injury, managing an injury is doing what you’re supposed to do to cope with the injury and to make the injury better. So I just applied that to my life with lupus. And anytime I have a flare, it’s a flare. Anytime I’m pretty even keeled, it’s a silencing. But I know that things that I do day to day will either bring that lupus symptom up or hold it down. So I really make a conscious effort to understand what interacts with my body to bring flares up and to bring it out of that silencing. And I interact with the environment that I’m in to make sure that everything is good there.

Adam Kegley  14:30

That makes perfect sense. I mean, it’s actually something that I was going to ask next. It’s funny that you say that it was about basically any advice you had for patients on how to get through those difficult moments whether they might be close calls or bad flares. Anything else to share there?

Racquel Dozier  14:44

I feel like living with lupus is just coping day to day honestly. And you have to find the coping skills that work for you because what works for me, Adam is not gonna work for you. What works for Susie won’t work for Sally. So I’m always saying, find what works for you, start with the basics, your food intake, your movement, your mental health, and then branch out from there. Everybody won’t do a full workout, but you can move by walking. Everyone won’t change to a vegan diet. But you can change Monday to Meatless Monday, everyone won’t be always straight mentally and spiritually. But you can see a therapist to help you learn those coping mechanisms to take it one step at a time as you deal with lupus. So my advice is to really take it one step at a time, learn your body by holding journals of the foods you eat, the moves that you go through, and whatever else that you need to have in that journal, and then look back at it to see oh, I ate asparagus and you know what, that made my stomach really bad, I kind of had a flare in my hand, little things like that, everything you do is just step by step by step. And you can only take this journey with lupus, a nanosecond at a time, I want to say a picosecond at a time, but that might be a little harder for people to get but every second counts, every step matters. And what you do with your time as you deal with lupus makes a difference on your lupus journey. Now, I do want to preface all that with you can do everything right but lupus is a chronic illness. And that chronic illness, doing everything right sometimes means absolutely nothing, you’re still going to flare, you’re still going to be struggling.

Adam Kegley  16:36

Right.

Racquel Dozier  16:37

But if you’re taking it step by step, moment by moment, I think it makes a difference in your lupus life.

Adam Kegley  16:42

Definitely. And I think that part of that conversation too, or part of that dialogue, not only with yourself, but with your doctor is about treatments or treatment plans and options that might be available for you to to help you whether that’s through flare through everything daily.

Racquel Dozier  16:56

Absolutely be an active participant in your treatment plan. Don’t just take what the doctor says for granted, because he’s just doing his job. He knows lupus is an autoimmune condition. And this medication usually works on most lupus patients, but you might not be most. So just pay attention to how everything is affecting you. Make sure that you’re an active participant in your care as far as your healthcare professionals and then make sure that you’re checking in on them too. Because sometimes they don’t know they’re seeing patients all over. Being patient with yourself, being patient with your doctor ,and being patient with just learning what lupus is in your life, because it’s going to change day to day. The way I was diagnosed is totally different than the way I am today. One because of course, we’ve got better treatments for lupus and course we work with a doctor to get the treatment that works best for me. Number two, I’m older, with age body changes. And with age, your body changes as well as lupus changes.

Adam Kegley  17:56

Right.

Racquel Dozier  17:56

So you have to learn to be patient with yourself and learn to really be an active participant in your treatment plan as well as your daily plan every single day. A lot of people don’t want to share their lupus story because they feel embarrassed, I find that a lot of lupus patients feel embarrassed because they can’t do what they used to do. And it goes back to your whole relationship with yourself, you have to really get out of the woe is me and beat yourself up a little bit and be like let’s go sister, you gotta get up, you gotta get up because the woe is me is going to keep you in that negative space. And I’m not talking about toxic positivity, I’m talking about just being in a negative space, being your worst critic, I’m just talking about you really just doing things inch by inch, to get to a place where you feel better, that you are able to advocate for yourself more when those disparities come in your space.

Adam Kegley  18:48

What you said, it’s like that perfect combination of everything we’ve been talking about like relationships, education, advocacy, and kind of that perfect cocktail or combination, if you will, to achieve low disease activity or remission, however you define that the silencing of lupus and really to make sure that you’re receiving your best possible care and so that others can advocate for the best care for others, whether that might be healthcare professionals or patients themselves. And thanks so much for sharing all of that Racquel. We really appreciate it and I know that people out there listening are going to appreciate it and your willingness to be so open about this and I just had like one last request. Before we wrap up just one more question and that would be as a fellow patient do you have three words you could share with our listeners that whether they have lupus or other chronic conditions, especially those listeners who might still be in an early stage of their journey, three words that would support them in continuing to seek that best possible treatment.

Racquel Dozier  19:47

I think my three words would be patience: Be patient with yourself, be patient with your doctor, be patient with the system that doesn’t understand lupus and how it affects your body. Grace: Give yourself some grace because you haven’t had lupus before. Don’t be so hard on yourself. Take it a moment by moment. And allow yourself to feel everything so that you can get through it in the most positive way. And the last word would probably be compassion: Just give yourself some compassion and allow yourself to love you beyond lupus beyond anything that you’re going through because if you’re not loving yourself, there’s no way that you can train someone how to treat you, or how to be around you. So patience, grace, and compassion are three words that you have to keep in your arsenal as you deal with lupus.

Adam Kegley  20:38

That’s perfect. I couldn’t agree more patience, grace and compassion. I think those are three of the perfect words to send us out. So thank you again, so much for sharing Racquel and for being with us today on Remission Possible.

Racquel Dozier  20:50

My pleasure. Thank you so much for having me.

Adam Kegley  20:54

Thank you for joining us on Remission Possible, the podcast where we explore the path to low disease activity and improved well being. We hope the stories, insights and guidance we’ve shared have inspired and empowered you along the way. This podcast was made possible with support from AstraZeneca. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us.

Narrator  21:26

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

Dr. Irene Blanco  00:00

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

Adam Kegley  00:13

Welcome to Remission Possible, the podcast dedicated to guiding and supporting you on your mission to achieve lower disease activity. I’m your host Adam Kegley, Associate Director of Global Partnerships at the Global Healthy Living Foundation. We understand that this challenge wasn’t something you asked for. But remember, you are stronger than you think. And you deserve the opportunity to regain control and live your best life. In each episode we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. In today’s episode, we’ll have an open and honest conversation with a leading rheumatologist, Dr. Irene Blanco, who will share her perspective on what drives her to help lupus patients on their mission to feel their best. Dr. Irene Blanco is a professor in the Department of Medicine Rheumatology, Director of Lupus Clinical Services, and is the Co-Director for The Clinical Research Ethics and Equity Consultative Service, which is part of Northwestern University’s Clinical and Translational Sciences Institute. At Northwestern Medicine, her research interests focus on health outcomes, health disparities, and adverse social determinants of health in rheumatology, and in particular systemic lupus erythematosus. She is the current co-chair of The Diversity, Equity and Inclusion committee of the American College of Rheumatology and serves on various DEI and Health Equity committees and task forces. Together we’ll explore how people living with lupus can work hand in hand with their doctors to prevent subpar treatment and establish a clear understanding of remission. So, whether you’re a patient in the early stages of your journey, or someone looking for inspiration and motivation, this podcast is for you. So join us on this mission as we empower you with valuable insights and tips to break free from the cycle of pain and anxiety and ultimately bring you closer to achieving low disease activity. It’s time to rewrite your story because remission is possible.

Adam Kegley  02:33

Hi, Dr. Blanco, thank you so much for joining us today.

Dr. Irene Blanco  02:36

Hi, thanks so much for having me.

Adam Kegley  02:38

Of course and I was just wondering to start if you could start by introducing yourself briefly to our listeners and telling us how you came to focus on lupus specifically.

Dr. Irene Blanco  02:47

Sure. So my name is Dr. Irene Blanco and again, I’m the Director of Lupus Clinical Services at Northwestern here in Chicago, Illinois. So how did I focus on lupus? So Lupus is a disease that predominantly affects women, and in particular women of color and being a Hispanic woman myself, I think it hits a little close to home. And so I actually have an aunt with lupus and growing up, I had seen my aunt with lupus, but it was somewhat of an abstract, you saw her that she was sick. And she has significant arthritis, a lot of joint deformities and whatnot but she didn’t really know what lupus was. And where I went to medical school, it was in a place where there was a very high prevalence of lupus. And so it was actually really exposed to lupus in medical school, which is not necessarily common, a lot of medical schools actually don’t have rheumatology courses. And so many medical students don’t really get a good education in rheumatology and in lupus, but I was very lucky to actually have a really good experience and have a lot of exposure early. And so seeing so many lupus patients early on, he just really made such a huge impact and really imprinted on me sort of like the myriad of disease presentations, really just what patients go through. And I think as a doctor and a provider, like what we can do to really help patients. And I think you know, as a young woman myself very much in that age range, right? Because when you’re a medical student, you’re in your early to mid 20s, you see yourself in your patients, and it really made an impact on me, and it’s kind of set my career in motion.

Adam Kegley  04:25

That’s fantastic. Thank you so much for the background, Dr. Blanco. I think it’s really interesting that you have from your personal history and professional history kind of combined to bring you into lupus and it’s I think something that you mentioned really stood out to me is that patients sometimes don’t even really realize what the disease is that they’re living with. I think you mentioned that your aunt and really didn’t know specifically what lupus was, is that correct?

Dr. Irene Blanco  04:51

Lupus is a rare disease, right? So I think…

Adam Kegley  04:54

Yes.

Dr. Irene Blanco  04:54

There’s not a lot of dialogue in communities on what lupus is just generally.

Adam Kegley  05:00

Yes.

Dr. Irene Blanco  05:00

It’s not as prevalent as diabetes or high blood pressure. So everyone knows somebody with diabetes. Everybody knows someone with high blood pressure. You get to a certain age and everybody sits around and starts comparing their medicines, right? All the grandparents together all the aunties sit together, and it’s like, what are you on? What are you on? I take that for my cholesterol. Do you like that one? I take this for my cholesterol. Right? But like when it comes to rare diseases, people don’t know what they are, people start looking things up online. And let’s be honest, I predate Google.

Adam Kegley  05:32

I’m from the Ask Jeeves era.

Dr. Irene Blanco  05:33

I even predate that, there was not much information. So there’s a lot of misinformation. So it was very hard for people to even know or understand. And then when you even think about the immune system, that in it of itself is a very hard topic to understand baseline even for physicians and other allied health professionals. So for professionals, it’s hard to understand nevertheless, for like a lay person, it can be really challenging for then a patient to describe to their family members, their partners, etc, what they have, what exactly is happening to them, especially oftentimes, many lupus patients don’t really have the rashes, don’t really have a lot of the external signs and symptoms of lupus, so then it can become the situation where on the outside, people look at them and say, well, you look fine. There’s nothing wrong with you, like I don’t get it and that can be really isolating.

Adam Kegley  06:34

Exactly, that’s something that I think we’ve seen many times with other chronic conditions as well that are more on the rare side of things. Even something though, like rheumatoid arthritis is sometimes people don’t understand what that is, what the difference is between that and osteoarthritis. And I think the conversation becomes even more complex when you’re trying to have a conversation with somebody who may have systemic lupus erythematosus or SLE, and trying to define remission, and what remission might mean to them or low disease activity. And I wonder if you could explain your perspective here how you kind of try and explain that to someone who is maybe newly diagnosed, maybe not, what remission that is, and also tell us if maybe remission is even talked about often in SLE?

Dr. Irene Blanco  07:19

I think we’re talking about it a lot more, I think the dialogue was really, the bar was really set by rheumatoid arthritis, right, this idea of treat to target. So the dialogue started with RA and I think we really started to pick up that lexicon and to start using that verbiage in lupus a little bit later. It wasn’t until later with the definition of like DORIS Remission and LLDAS, which is like low lupus disease activity where we now have like goals, because I think for a really long time, we all set the bar a little differently as to like what remission looks like, and what low disease activity look like. I think now that it’s really been defined by certain groups, we can now really set standards and really say okay, no, this is how we’re going to define remission. This is how we’re going to define low disease activity. And now let’s start being aggressive to get people there. Lupus is, and my favorite word for lupus and actually, I can’t take credit for this because one of my favorite people on Earth who was a rheumatologist in Brazil, Katerina Villa, she’s the one that first said it like, we were just like talking one day, and I’m like, yes, thank you. She described lupus as kaleidoscopic. And that’s like the best word for like the best word.

Adam Kegley  08:46

Yeah.

Dr. Irene Blanco  08:47

Because literally lupus can affect every single organ system, right? Literally every single one. And within each organ system, it can have a whole bunch of different manifestations. And so not any one patient can present in any one different way. Right. So even in lupus nephritis there’s a whole bunch of different manifestations, and you break it up in different classes of lupus nephritis. So even like patient A can have class four lupus nephritis, and patient B can have class four lupus nephritis but that doesn’t mean that patient A and B will respond the same way to the same medicines. So it’s very, very different. So now if we sort of define remission in the same way, and we’re like, okay, well, these are our targets, and we’re going to treat to target and these are our definitions and we know that potentially, they’re not going to respond the same way. Well, at least we now have an endpoint and an end goal and now we know alright, well, these are our reassessment points, and this is what we’re going to go towards. So we may take a different path for each patient to get there, but at least we know where our goal is, right? We know where our target is.

Adam Kegley  09:55

Exactly and I think that’s a really good point that the journey for one patient might be radically different than it is for the next.

Dr. Irene Blanco  10:02

Totally.

Adam Kegley  10:02

And I think you talked about this a bit in your response just now. But I was wondering, do you have kind of those specific measures that you use to assess remission in patients or when you’re planning treatment strategies for them?

Dr. Irene Blanco  10:13

Yeah, so I mean, the remission targets that we talk about is the DORIS Remission target.

Adam Kegley  10:20

Okay.

Dr. Irene Blanco  10:20

So DORIS Remission is defined as a SLEDAI or so SLE disease activity index of zero. So a clinical SLEDAI of zero, right. So no disease activity index, clinically, they may have potentially some disease activity in terms of their labs. But clinically, there’s no arthritis, there’s no rash like clinically, everything is quiet. Their physician global assessment, so what the physician sees, it’s on a visual analog scale, so it’s at less than point five. So it’s pretty much zero, they’re at less than or equal to five milligrams of prednisone. So they’re at a stable, really low dose of prednisone, and they’re on stable immunosuppression. We may not always be able to get our patients off immunosuppression, just like patients with high blood pressure, they have nice low blood pressure because they’re on high blood pressure medicine.

Adam Kegley  11:14

Yep.

Dr. Irene Blanco  11:14

It is what it is, we got to keep this disease quiet, to keep them healthy, to keep these organs working well to keep long term outcomes looking good and healthy to keep them being able to have happy, healthy functioning lives. And that means potentially maintaining long term immunosuppression, potentially, we might be able to taper down the dose of the immune suppression, but oftentimes, we are not able to take it off completely. And it is what it is. So in the DORIS Remission criteria, the idea is that we get you on a stable dose and potentially we leave you there with the idea of if we can taper it awesome if we can taper it to off, fantastic. But more often than not, we’re probably getting you to as low a dose as possible, and probably leaving you there.

Adam Kegley  12:04

And I was wondering if you have any advice for kind of those key questions that patients might be asking their doctor or might should ask their doctor regarding that end goal of achieving remission in lupus?

Dr. Irene Blanco  12:16

I think it’s important that patients are aware of sort of like the numbers of lupus to kind of be a little savvy of their lab numbers. Now that a lot of the electronic medical records start to show patients their lab numbers for better for worse, I’m not necessarily incredibly keen on the lab just like automatically releasing to the patients within like two minutes of the labs being drawn. Right. Sometimes I’m like, give me a few minutes to review the lab.

Adam Kegley  12:49

Before you get 10 messages.

Dr. Irene Blanco  12:51

Before I get 10 messages, because odds are the patients didn’t go to medical school. And so sometimes it could be a little hard for them to interpret. And they’re like, I don’t know what I’m looking at. I’m like, how would you you didn’t go to medical school, you’re not a PA, you’re not an NP like you don’t know what the heck you’re looking at. No, I get it totally. But there is a benefit in it, right. And they think for a long term patient, this is a chronic disease. If you start to learn that in your lupus, your lupus is very responsive to your complement levels. So when you’re active, your complement levels tend to drop and when you’re not active, your complement levels tend to go up. So you’re starting to feel kind of sick, and you tend to get your labs a week or two before you go see your doctor. And sure enough, you see your labs come back and your compliments are a little lower. And you’re like yeah, that tracks like sure enough. So when you see your doctor, you’re like, you know what, I haven’t been feeling so great. And I saw my compliments and they’re a little lower, and I think I’m heading into a flare, that’s a better conversation that you’re having with your doctor. Or if you know that when your lupus is more active that your platelets tend to go down and you starting to see that trend and your platelets are starting to go down. Maybe we’re starting to catch it early before your platelets really, really dropped and we have to hospitalized here. So I think being savvy about your labs. If you have lupus kidney disease, knowing what your protein in the urine is, knowing what your serum creatinine is, etc, because that helps you to have better conversations with your rheumatologist with your nephrologist or kidney doctor and it helps you to sort of have an understanding long term because if heaven forbid we start to have discussions about things like transplants, things are not a surprise.

Adam Kegley  14:46

Exactly and I think it’s a really good point to that you make is that with all of the information about bloodwork, if people don’t know what those particular items are, they can also ask those questions as a pre-questions almost to their doctor.

Dr. Irene Blanco  15:01

Oh, yeah.

Adam Kegley  15:01

And you can explain those things and then that way they know what to look out for.

Dr. Irene Blanco  15:05

Exactly.

Adam Kegley  15:06

I think it’s really, really important. I know that some of the work you’re doing on the research side also, of course, directly feeds into this, and what we talked about earlier about how lupus is especially prevalent in women, and especially prevalent in women of color. And I wanted to talk about that a bit about your research, because it’s really important. I know, it’s focused on health disparities but I was wondering if you could tell us about some of the findings from your research about health disparities specifically for lupus patients.

Dr. Irene Blanco  15:32

Lupus disproportionately affects patients of color, both on men and women, and it’s generally across all racial and ethnic groups. And it’s not only a situation where it’s tied to racial and ethnic minorities, but there’s also a large prevalence in communities affected by poverty, and also disproportionately affected by adverse social determinants of health. So what is it about just the adverse environmental psychosocial issues that potentially lead to derangement of the immune system that within the right background can lead to this downstream effect that potentially can lead to lupus. So we see, for example, that in patients with higher economic instability, for example, they have higher disease outcomes, they have a lot higher disease, activity index, etc. They have poor access to care, all the things you can imagine, my research really focuses on thinking about how we actually teach our providers and our trainees on really addressing those things within clinical encounters, and how to really start talking to their patients about doing something.

Adam Kegley  16:58

Right.

Dr. Irene Blanco  16:58

Like how they can start to address it with their patients to move the needle forward. Because we know like our data shows that particularly our trainees are very overwhelmed by all the psychosocial issues that they see our patients facing. Because when you go to medical school, you learn all about the molecules of a disease. You learn about the cells, you learn about the molecules, you learned about the drugs, you learn about all the things, but you don’t really think all about the psychosocial things that a patient goes through. Oftentimes that sort of talked about in a way that’s like, oh, well, that’s what the social worker does. That’s what the other people, quote, unquote, in the hospital are on the team, think about focus and do.

Adam Kegley  17:45

Right.

Dr. Irene Blanco  17:46

But that’s BS, because at the end of the day, you’re going to be that patient’s doctor for many years. And if you’re not addressing it, you’re not sort of like in it with them. You can’t deal with it one on one with the patient, because it’s really affecting the one on one care that you’re delivering with your patient.

Adam Kegley  18:06

Exactly.

Dr. Irene Blanco  18:07

You have to know, at least be aware of what the patient is facing to be able to battle these issues, whether it’s insurance issues, whether it’s food insecurity, whether it’s access, whether it’s transportation, whatever is facing the patient. And so our trainees are telling us that their programs, their medical schools are not teaching them how to do these things. Their residences are not teaching them how to do these things. They’re fellowships are not teaching them to how to do these things. And then they go out into practice and most rheumatology practices don’t have social workers don’t have psychosocial support. And then the patients are like, I can’t get my meds. I have no transportation, I have no this I have no that and then we wonder why they’re flaring.

Adam Kegley  18:45

Exactly. It’s a really good point and I think it also speaks to the need for someone to be able to address all of those issues holistically, because there’s also a certain level of distrust or mistrust amongst certain underrepresented communities when it comes to the health care system. And when it comes to health care providers in general. And I think what you’re saying and what your research is aiming to do, I’m understanding correctly is also addressing that too. And really tackling those things. I think all of these things kind of apply. Are these things you’re actively doing in your practice to help patients overcome disparities in care in that regard?

Dr. Irene Blanco  19:20

Definitely. So I mean, I think, you know, in terms of what I’ve done at my prior institution, and what we’re doing here is to be incredibly proactive about thinking about our patients very holistically and the issues that they’re facing. And to really say, we’re going to take every individual that we have in front of us, as you say, like holistically and thinking about them as a whole person and not really taking their disease as if it’s separate from the person like this is a person with lupus. It’s not like a lupus case as if it’s like just a case in a vacuum right? It’s a attached to a person that has a family, that has a job, a life, goes to school, has all the good and the bad, and everything that comes with having a life and you can’t separate those things. And you don’t necessarily work with your patients and really think about their context, you’re not really delivering care. And we really need to work within those frameworks and those constructs to be able to really think about that. So how do we deliver multidisciplinary care? How do we coordinate care across different disciplines to be more streamlined? How do we really think about increasing our access? How do we facilitate, for example, care for our limited English proficiency patients?

Adam Kegley  20:50

Exactly.

Dr. Irene Blanco  20:51

How do we ensure that we have sufficient resources like within the clinic, as well as like through the NM community to help support those patients, when they face their adverse social determinants of health? Are we collecting their social determinants of health so we can understand who’s facing food insecurity, housing, insecurity, etc. So we can start to leverage the broader institutional resources that we have and start to plug them in and actually be proactive? Because I think you feel so helpless when you don’t have the tools to to help take care of your patients. But when you realize that so many of these efforts are actually in existence at the hospital, they just may exist within primary care, or they may exist in general internal medicine, but they exist, how do we then start to plug in and start to leverage these other resources and then start to partner across the institution, it ends up saving the institution money, because potentially we may subsequently avoid ER visits, hospitalizations, etc. But also it just takes better care of patients.

Adam Kegley  22:06

Exactly. This conversation has been fantastic, and I don’t really want it to end. I know for one thing that if I had lupus, I would definitely be calling you up.

Dr. Irene Blanco  22:14

Thank you.

Adam Kegley  22:17

Or anybody that you recommended, for that matter. And I think to just as a last thought, thinking about everything that you’ve said, if you could condense all of your thoughts and advice for patients into kind of three words or short phrase you would share with them listening, you know, especially those who might still be in an early stage of their journey just to support them and continuing onward to seek the best possible treatment. You know, what might those three words be?

Dr. Irene Blanco  22:42

Three words?

Adam Kegley  22:43

Or a phrase.

Dr. Irene Blanco  22:44

Or a phrase, don’t give up.

Adam Kegley  22:46

Exactly. What was it that your doctor friend from Brazil said?

Dr. Irene Blanco  22:49

Lupus is kaleidoscopic.

Adam Kegley  22:51

Yeah, kaleidoscopic as well. Interesting.

Dr. Irene Blanco  22:53

That’s the best word. It’s the best word for lupus, because it really is. I mean, I think that’s the phrase like it’s don’t give up, because there’s going to be days that are going to be incredibly hard. And there’s going to be some very high highs, and they’re going to assume Rarey, low lows. I think what I tell patients, particularly in the beginning, when right at the beginning, when they’re first diagnosed is that the beginning particularly the first sort of like six months, maybe even the first year can be really, really rocky, potentially, there may be multiple hospitalizations, if they have significant organ damage, etc. They may be on really potent medications, they may be on infusions, it can be really, really scary. And just like they may be interacting with hospital systems in ways that they never thought about or even expected, especially if they’re very young. So they may have gone from never being sick to now all of a sudden being really, really sick. And that could be incredibly traumatic. But it’s really to understand sort of like that we’re with you that like we’re part of your team. And the biggest thing is to like not give up, and that if things are starting to feel sort of like dark and hard to let us know we’re here for you, and that we can help you find the resources that you need like and taking care of yourself is not only taking care of your body, it’s also taking care of your mental health because it is so hard it is so hard to be sick and it’s so hard to be sick with a disease that literally can affect every organ system and lupus patients can get insanely sick very, very quickly. So you may present needing dialysis, you may present with new strokes, you may present in heart failure, you may present really, really ill and if you’re 19 and you never thought that anything like this was gonna happen to you. You are a college student and now you’re on dialysis. What the heck happened that could be so traumatic. We’re here to help you through all of that. And to let us know and we can sort of it can be really rough, it can be incredibly hard, but to let us know so that we can help not only the physical side, but also the mental and the psychosocial side.

Adam Kegley  25:17

I think that’s quite perfect. I think you had three phrases, actually, that were three words each, which was, don’t give up, we’re with you, and let us know. And I think that really beautifully sums it up. And I just wanted to thank you so much for your time and for being with us today. I think it’s really going to be hugely beneficial for patients to hear you and you might be getting some phone calls.

Dr. Irene Blanco  25:43

Thank you.

Adam Kegley  25:46

Thank you for joining us on Remission Possible, the podcast where we explore the path to low disease activity and improved well being. We hope the stories, insights, and guidance we’ve shared have inspired and empowered you along the way. This podcast was made possible with support from AstraZeneca. If you like what you’ve heard, be sure to rate our podcast, write a positive review, and spread the word by sharing with your friends and family. It’ll help more people like you find us.

Narrator  26:18

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