Nr-axSpA: Perspectives From a Patient With nr-axSpA

Disclaimer (00:00 – 00:26)

• This is an educational program sponsored by UCB
• The information contained within this podcast is for your educational purposes only and is not intended to be medical advice
• The guest speakers have been compensated for the presentation of this educational information 
• Patient life experiences will vary and may not be representative of the experiences or perspectives of others
• Healthcare providers should exercise their professional judgment when treating their own patients

Introduction (00:26 – 02:02)

Dr Jeff Stark (00:31)

Hello, and welcome to the third in a series of podcasts called non-radiographic axSpA, a community of care, podcast series. The goal of this podcast is to learn about non-radiographic axial spondyloarthritis or nr-axSpA from the patients' perspective. My name is Dr Jeff Stark. I'm head of medical immunology at UCB, and I'm very pleased to be joined by Summer, a patient who has lived with the disease of non-radiographic axSpA and will share insights from her patient journey with us today. Our podcast today will focus on several topics. These include disease burden, the impact of non-radiographic axSpA on daily activities, career and family, the diagnostic journey, and the impact of having an accurate diagnosis. Summer, please introduce yourself and tell us a little about yourself.

Summer C. (01:26)

My name is Summer. I'm 38. I'm currently unemployed. I've been unemployed for two years. Been seeking disability during that timeframe. My family situation is; I'm single. I have two kids that I raise by myself, and their father passed away about four years ago. And I was 34 years old when I got my diagnosis but had suffered for many years prior to that with symptoms.

Dr Jeff Stark (01:58)

Yeah. That's, I think, unfortunately all too common a story that we hear from patients who live with non-radiographic axSpA. Thanks for joining today and sharing your story with us.

Summer C. (02:07)

Thank you.

Disease Burden (02:08 – 05:30)

Dr Jeff Stark (02:08)

Summer, as we think about the journey of people with non-radiographic axSpA undergo on their way to diagnosis, oftentimes back pain is a key part of that journey, sometimes the earliest symptom that people experience. And yet we know that even though back pain is common across the board, that this particular kind of back pain in non-radiographic axSpA may be different than that more common type of back pain that everybody experiences from time to time. I wonder if you could tell us a little bit about what your symptoms were like when they first began and how they changed over time?

Summer C. (02:44)

Yes. Absolutely. When my back pain first started, it was lower back pain and it eventually over time moved up through my entire back. It was not very significant pain when it first started. Because it continued over time, I was seeking medical attention for that. And I just kept getting told, "Oh, you're too small. It's because you're pregnant." And I really just ignored that and thought that you know they're right. This is what's wrong with me. Eventually it got the point that I couldn't get up out of the floor because of the pain. I knew then I had to find out what was wrong because that was not normal. And at that point I started officially seeking answers to what was causing this problem.

Dr Jeff Stark (03:33)

Thank goodness that you pressed further to try and get to the bottom of that. I think that as we hear these stories from patients, pain is almost universally a part of that story and in particular back pain just as you've mentioned, Summer. But that's not the only way in which the disease affects people. And we hear stories of other symptoms like stiffness and fatigue and then some other interesting symptoms as well that may affect areas like eye. Things like Uveitis or Iritis or Enthesitis and inflammation of tendons or ligaments. And it's really not just the pain I think, but the fatigue and these other symptoms as well, that really can impair people's quality of life in a way that's just as severe as some of the more common diseases we see in rheumatology. I wonder if you could tell us if you've experienced any of these other symptoms, and maybe a little bit about the impact they've had on your life?

Summer C. (04:29)

Yes. As far as these other symptoms go, a lot of the other symptoms that can be tied to having this is more impactful, for me, than the pain is. And the fatigue is so exhausting and it is just always there. It's a permanent state of being exhausted. You can't get past it, no matter what you do. And then the Uveitis and Iritis, I had so many flare-ups of Iritis that it permanently damaged my right eye. So my eye no longer works the way that it's supposed to. My pupil doesn't dilate, so my depth perception is off. My ability to focus when light changes. All of the things that your eye is supposed to do, my eye does not do like it's supposed to. So it makes them work harder. It causes more fatigue. It causes me problems driving. All of which are very big impact in my life

Impact on Career and Family (05:30 – 09:09)

Dr Jeff Stark (05:30)

It's really helpful to hear about your symptoms and the severity of them, really the way in which they affected you. For many people with non-radiographic axSpA, those symptoms are severe enough that they interfere with their ability to work. And I know you mentioned that earlier as well. It's really certainly not only you who experiences that, but a common experience for people living with this disease. In fact, in one study in the literature, 45% of patients with axial spondyloarthritis had to switch to a less physically demanding job. And in that same study what was remarkable to me was that almost a quarter of them left the workplace early, and they left the workplace not at the end of their career but more at the beginning. The mean age at which they left the workplace was only 36 years. I wondered if you could maybe share with us in a little more detail how having non-radiographic axSpA has affected your ability to work?

Summer C. (06:26)

That's very interesting because the data from that study is very correct. I left work when I was just 37. My job has always been very physically demanding. I was a CNA at the time that I left. But I have always done some aspect of healthcare throughout my journey of working and it wasn't so much that I made the decision to leave. My pain and all the other symptoms that I had, had reached a point that they asked me to leave work because it was impacting my ability to do my job so much.

Dr Jeff Stark (07:03)

Well, that's especially difficult when it's not just limitations that you notice yourself but limitations that others notice about you. As we think even further about the impact of the disease certainly it affects people professionally in terms of their working life but also I think for many people personally in other aspects of their life. Things like their family and their social life, I wonder if there are any ways that you would feel comfortable sharing that non-radiographic axSpA has affected you in those areas.

Summer C. (07:35)

Yes. Absolutely. With this a lot of people don't think about how the depression and anxiety can have an impact on what happens in your daily life. And my anxiety and depression has gotten so bad with this that it impacts my ability to have a functioning social life. I get nervous even talking to my close family; my sisters, my mother, my father. I'm just afraid people won't understand and that they won't be accepting of what's happening. But they also are unable to understand how a person is always so sick that they can't make it to an event. And eventually, people just stop asking you to come to things, so that can be very, very difficult to deal with, as far as, outside of the social aspect and a more family and private environment. I've been unable to have a relationship successfully because people don't want to be with somebody that's always sick at such a young age. They don't want to have to take on taking care of somebody just yet. They're not at that phase of life. People just don't want to take on that burden, and it gets very lonely, and it's very hard to live that way.

Dr Jeff Stark (08:51)

Well, Summer, thank you for having the boldness to share that. I think that's a side of the disease that many members of our audience don't ever have the chance to hear, and yet, it's great for them to realize that that is a very real way in which non-radiographic axSpA affects people. Thank you for sharing that.

Summer C. (09:09)

Thank you.

Diagnostic Journey (09:10 – 12:00)

Dr Jeff Stark (09:10)

Summer, another part of your journey that you mentioned that I think is unfortunately common for people with non-radiographic axSpA is this delay in diagnosis. And when that has been looked at in the literature, this delay is pretty dramatic. So that period of time, from which symptoms begin to when a patient has an accurate diagnosis, is on average five to eight years. When you compare that to some other diseases that we see in rheumatology, things like rheumatoid arthritis that typically has a delay of less than a year, it becomes clear how unique that is to axial spondyloarthritis and the way in which axial spondyloarthritis patients are affected disproportionately by this delay in diagnosis. 

We hear from patients, as well, that oftentimes during this period of delay, they're seeing physicians. They may not necessarily be the right type of physician but oftentimes there are many different physicians or healthcare professionals who are involved in their care during this time. I wonder if you could tell us a little bit of detail about your own diagnostic journey and the delay in diagnosis that you had.

Summer C. (10:19)

Absolutely. So for me, I'm a little outside of the box in this diagnosis delay because it took me 19 years to get my diagnosis initially. And a lot of that, I do want to make clear, is because I stopped seeking treatment, over the course of that time, a couple of different times. And so that in itself did contribute to the extension of how long it took to get my diagnosis. 

Initially, doctors did not want to believe me and they were sending me to mental health professionals, and just trying to put me on antidepressants. And everything that they tried made me sicker and would make me want to give up. I did go through a phase where they were trying to send me to a pulmonologist thinking maybe I had asthma and that was causing some of my issues, and at one point even a cardiologist. My eye doctor was very involved, and in fact my eye doctor is who eventually led me down the road of the correct diagnosis. When I started having all the issues with iritis and it got to that severe point of damaging my eye, they knew something wasn't right and they started doing bloodwork and they made the recommendation that I go see a rheumatologist. That is what finally got me my diagnosis of non-radiographic AS.

Dr Jeff Stark (11:49)

Well I think it's perfectly understandable that you experienced some up and downs over those years, but very thankful that you ultimately didn't give up and pressed on until you got an accurate diagnosis.

Summer C. (12:00)

Absolutely.

Impact of Accurate Diagnosis (12:01 – 15:14)

Dr Jeff Stark (12:01)

Summer, hearing you share some about your journey to diagnosis and some of the pathways that were, perhaps, wrong ones that you went down. We understand that this is common as well and that people are often given inaccurate diagnosis for a period of time until they ultimately arrive at the correct one. 

Unfortunately, what studies tell us is that people who have this delay in an accurate diagnosis and, therefore, a delay in getting started on appropriate treatment, often times, have a greater impact of disease. So they tend to have lower quality of life and worse outcomes and a less favorable response to treatment even once they are started on appropriate treatment. And that can be measured in various ways through disease activity measures or functional measures, but even things like mobility, the range of motion that people have, and the way that they are affected by their disease in that way. I wonder if you could tell us a little bit about the way that that delay and having an accurate diagnosis affected you personally.

Summer C. (13:10)

So for me, a lot of this was a difficult challenge. They tried to diagnose me with mental health problems, initially, as opposed to actually trying to figure out what was wrong with me. So that was a challenge. And of course, now I do have depression and anxiety that I deal with, and I'm very sensitive to a lot of medications which make me sicker. So it makes it very hard to find a good and accurate treatment course from myself. So my doctors tend to struggle with that a little bit, and I struggle with dealing with that. But the struggle you go through trying to get that accurate diagnosis, like you said, it results in things like your range of motion being decreased. Because, over time, your body is continuing to deteriorate while you're seeking out this correct diagnosis and a good treatment plan. And so, my arms, I can't move my arms like I used to. I can't get to my back so it makes it challenging when I try to wash my back in the shower. Shaving is difficult. I actually have to have a seat to sit on in the shower so I can shave my legs because I can't move like I used to move. And, at one point in time, I was going through a flare that I couldn't even get my shoes on without help because of the way you have to move your joints in order to do these things. And people don't think about how that can occur because they think so much about this being specifically a back thing and it's not. It's a very systemic, problem.

Dr Jeff Stark (14:53)

Thanks, Summer, once again, you've shared some really, I think, intimate but also very specific details of the way that your disease affects you. And these are not things we hear when we read studies about this disease. And so, for our audience, it's really great to hear the very personal experience of how this disease affects you and your ability to function.

Summer C. (15:14)

Thank you.

Conclusion (15:15 – 19:34)

Dr Jeff Stark (15:15)

Summer, as we begin to wrap up our time together today, I just want to say thank you. You have been so articulate in sharing what this journey has looked like for you. Your openness and your honesty about some of the symptoms that you've experienced and the challenges that you've had along the way has been really enlightening for us and gives us a real sense of the way in which non-radiographic axSpA can affect patients living with that disease in so many and diverse ways.

I wonder if, as we're closing, there is anything that you would like to share that you just wish other people knew about non-radiographic axSpA and what that personal journey of living with the disease looks like.

Summer C. (15:56)

Sure. So one of the things I feel like isn't as much talked about and addressed when it comes to this disease is the impact that it can have on your heart and lungs. I feel like in a lot of ways, any of the things that I try to research or any of the doctors that I talk to and things they're less aware and knowledgeable about how it can affect your heart and lungs. And yet that is something that is a symptom of this disease, and it's been a very, very big impact on me as well. And because that is so missed in the topic of discussion, it can lead to so much more problems in your life. So it's scary, because that's not addressed like I feel it should be.

Dr Jeff Stark (16:59)

Summer, thank you for sharing about those personal aspects of the disease that you have lived with. I think you're absolutely right. When we think about non-radiographic axSpA we tend to think about what we consider the cardinal symptoms of disease, the back pain. And while certainly that is a common experience and something that almost every patient with this disease lives with, it's a great reminder for us that there are many other ways it can affect people. Other parts of the body that can be affected and other ways that patients' quality of life can be impaired outside of back pain alone. 

And for me, hearing you describe that, it really illustrates some of the key points that we're hoping our audience walks away with from this podcast. Certainly, recognizing that non-radiographic axSpA is a disease that carries a high disease burden with it, and therefore it can potentially have a negative impact on both personal and professional aspects of patients' lives. 

You've really shared with us, I think in a very personal way, how that diagnostic journey that you underwent can be very long and complicated and certainly that's true for many patients. But also for me a word of hope, how at the end of that diagnostic journey, an accurate diagnosis can still bring relief and much needed help for patients living with non-radiographic axSpA. As we think about those patients who, like you, are living with this disease I wonder if there is any advice or message that you would want to share with them?

Summer C. (18:30)

Some advice that I would like to offer to patients going through this journey. From the very beginning, try to keep yourself active. That is one of the most important things with this disease, because activity helps keep your joints from becoming stiff and less mobile. So the activity is a huge part of trying to be successful through this journey. 

Dr Jeff Stark (18:54)

I really appreciate the way in which you have opened your life to us, so to speak, today. And allowed us to really understand what living with this disease has been like for you. 

Thank you for your openness and your candor, and for your real vulnerability in opening this window into your life and helping us to understand how living with non-radiographic axial spondyloarthritis has affected you personally.

Summer C. (19:20)

It has been my pleasure. And I really hope that this information can be helpful to others going through this journey.