Artwork for podcast The Axial Spondyloarthritis Podcast
Are We Looking At This Disease Wrong
Episode 6820th September 2020 • The Axial Spondyloarthritis Podcast • Jayson Sacco
00:00:00 00:22:03

Share Episode


Hello, and welcome to this week's episode of The Ankylosing Spondylitis Podcast. How's everybody doing today? This has been a fantastic week here in Michigan where I'm at the temperatures have pulled back a little bit. It's been actually cool, but not super wet. So the Ankylosing Spondylitis all feels pretty darn good. I know other people are starting to come into their summers as we had in our falls. So I hope everybody is doing well and and for those of you that are on the west coast of the United States dealing with all the fires, I really hope that you are doing well. And for anybody around the world has got fires or some natural issues, disasters going on. I hope everybody's just safe and able to just enjoy life as best you can. 

As you get going. I wanted to read a couple of really neat emails and a review that came in on the podcast. And this review was from England, from the United Kingdom, and it says,

I've been enjoying this podcast for a few months now. It's been super informative and helpful to learn about how other people react to this disease and what their experiences are. Thanks for sharing.”

 Well, thank you, JoeGeorge in the United Kingdom. I appreciate hearing from you. And that's really fantastic. I appreciate the feedback. We're all a community here with ankylosing spondylitis, non-radiographic axial spondyloarthritis. You know, that whole axial spondyloarthritis umbrella. We're all in this together. We're all here to learn from each other and help from each other. And I really hope through the show, if somebody hears something and it helps them, get through the day, through the hour through the week, whatever, that they're better off for it. So I really enjoy getting this feedback from everybody that's listening. I also got an email from a young lady named Lydia, she wrote, 

My name is Lydia and I'm from Ireland. I am 39 and was diagnosed with AS just before last Christmas. I am so glad I listened to your podcast and it made me feel less alone with this life changing condition. Thank you for the information and keep up the good work.” 

Well, Lydia, thank you for reaching out. Thank you for sharing a little bit about you and your diagnosis. I hope this finds you doing fantastic. And again, we're all here to learn from one another. So please don't hesitate to reach out to myself to reach out to anybody with questions or any concerns you're having regarding this. And we'll try to at least support you in the best way we can. Then I also got this email from a gentleman it also in the UK, and he wrote, 

“Hi, Jayson, I just want to tell you how awesome your podcast is. I was diagnosed very recently. And he says about two months ago with as in your podcast was quite helpful and understanding the basics of AS and what progression to expect in the future. He says I am fortunate to be relatively mild case compared to many horror stories that I've heard and I still have the option of taking biologics in my progression is not good. In that sense, I am really thinking about people like you and others that were diagnosed decades ago when NSAIDs were the only option. It's incredible to think that people went through so much pain with so little pharmacutical support goes on to say I guess it's even worse to think about people about 200 years ago would have gone through this their life with as with no medical support, and everyone thinking that they were simply lazy. It would be really amazing to look at the history of AS (I did do a episode on Ankylosing Spondylitis history. I'll have that in the show notes so that you can go back and listen to it. And I sent it off to him as well in an email response. So I hope he enjoys it finishes up and says), Thanks for doing the awesome job of creating the podcast.

Well, you know what, Jergas, you are so welcome. I'm glad you like it. I really appreciate the link to the book you sent me. 

So anyway, let's get on to today's show. So today's show is about Axial Spondyloarthritis. For some of you that are new, you might hear that name and say I've not heard that before. I've only heard Ankylosing Spondylitis. For others, you'll say, why keep going to my doctor and telling them that I have Ankylosing Spondylitis? And they keep telling me “No you don't”. I have all the conditions I have all the symptoms, but they're not dealing with me. You know, I can't get this diagnosis of Ankylosing Spondylitis because they say I don't have any visible fusion or you know, damaged any of the joints. Well, maybe we're all looking at this wrong and there's been really a change in the last 20 years in the Rheumatology field. One of the things is, is the identification of what is known as non-radiographic axial spondyloarthritis. You know, that term gets thrown around a lot now and is fairly acceptable in the diagnosis of what you might have. But really, that term was just developed and coined in 2009 by ASIS, which is the Assessment of Spondyloarthritis International Society. Think about that non-radiographic axial spondyloarthritis. That term as recognition was just done in 2009, just 11 years ago as of the recording of this. That's amazing. It's just a very short time period ago. So maybe we're looking at this backwards. Maybe there is no Ankylosing Spondylitis and there is no non-radiographic, maybe there's just axial spondyloarthritis. And the progression of it is from the non-radiographic axial spondyloarthritis to the Ankylosing Spondylitis, maybe those two terms should be completely removed from the vocabulary, and everybody just has, if you think about it linear, everybody has axial spondyloarthritis. And you pick some point on there to say, this person is in this area, closer to the one area and this person is over here and this person is further along in the diagnosis. And maybe it's just one plane that we move along in this disease called axial spondyloarthritis and the term non-radiographic and Ankylosing Spondylitis should be thrown out. Maybe they're causing more confusion because we now have a system where once that term non-radiographic was coined medications in the insurance lexicon I have saved the United States, other parts of the world might be different. But in the United States now, there's medicines that are approved for Ankylosing Spondylitis, but they're not approved for non-radiographic. So, somebody comes along and as non-radiographic, the doctor wants him to get access to a certain medication. So they diagnosed him with something different like rheumatoid arthritis. So they can open up different medication avenues, maybe it should just be you can be treated across the board under the umbrella of axial spondyloarthritis regarding actually sponder arthritis as a whole, I found this right up by a doctor Atul Deodhar I butchered that. So anyway, I liked what he had to say he he goes on to say “I would take a step back and say that spondyloarthritis is a family of diseases and rheumatology as you know, although for all of the rheumatic diseases that we see in daily clinical practice, we try to group them to families with similar clinical manifestations, similar genetic backgrounds and so forth. Spondyloarthritis is a family of rheumatic diseases that have typical clinical features a typical clinical phenotype there is spinal involvement, there is peripheral involvement, synovitis and enthesitis. The spinal arthritis family also has involvement of the skin in the form of psoriasis, eye involvement in the form of uvitis and I write us and so forth. Genetically, these diseases have HLA-B27, which is the human leukocyte antigen b 27. As a common genetic background under the family of spondyloarthritis, we can divide that family into axial vers peripheral spondyloarthritis peripheral spondyloarthritis would have psoriatic arthritis and arthritis with inflammatory bowel disease. Axial Spondyloarthritis is divided into radiographic and non-radiographic axial spondyloarthritis. Radiographic Spondyloarthritis is when we have definitive changes of sacroilitis on the plane X ray” of the sacroiliac joints and non radiographic is if the changes of the sacroilitis are not that definitive, the Ankylosing Spondylitis that all of us have known for a very long Time is radiographic axial spondyloarthritis where the changes of sacroilitis are definitive on the plane X ray of the sacroiliac joint non radiographic axial spondyloarthritis is still part of the axial spondyloarthritis. But the changes of the sacroliac on plane X ray are not obvious or perhaps totally absent. That's the only difference between radiographic and non-radiographic is the degree of sacroiliac joint involvement on plain X ray. Dr. Deodhar goes on to say, as you rightly ease replying to a question from a doctor Sergio Schwartzman, who says Dr. Schwartzman says “Do you think that this is indeed an important differentiation with regard to the Natural History of the disease or with therapies?” And Dr. Deodhar says, “That's a very important question. as you rightly said, initially, the 2009 classification criteria by the ASIS group coined these terms and that was mainly done for clinical trials to get the homogeneous patients into a trial. In day to day practice these terms should not matter because as we all discuss later, the clinical presentation, the burden of the disease, the treatments, and the outcomes can be quite similar.” This is just fantastic to hear the doctor has talked about this. He goes on to say, “Of course, if you take the extreme ankylosing spondylitis where someone has bamboo spine, that would have a very different outcome, one can see that these are the two extremes of the same spectrum of the disease”. So in day-to-day practice, it shouldn't matter whether it is non-radiographic or radiographic as long as you're able to diagnose axial spondyloarthritis and treat those patients. That's the most important part of understanding the spectrum. And that's what I wanted to get at today is that the word I was trying to get to earlier in the show was spectrum. We're all on the same spectrum of the disease and going into a doctor and this is where I think doctors need to be updated on their knowledge as well as we're no longer saying you have Ankylosing Spondylitis or you have non-radiographic those really are terms that we kind of need to throw out in the day to day practice. You either diagnosed with axial spondyloarthritis, or you're not on the axial spondyloarthritis spectrum, you could be very mild with very few symptoms newly diagnosed, you could be in the middle where you're showing a lot of the symptoms, but you don't have any type of fusing issues with your spine and then you could be on the far right side of it, where you've got the bamboo spine, you progress through a whole number of diseases, but we're all the same disease. And I think that's going to be the key thing going forward. And where we really need to figure out working with groups like the Spondylitis Association of America, and the partner groups they have in all the other countries that they're no longer is a term called ankylosing spondylitis or non- radiographic, those are simply going to be items for research purposes in the day to day practice. Its do I have axial spondyloarthritis or do I not have axial spondyloarthritis? To me, that was just an amazing article and I have a link to it. That will be down in the show notes below. And it's a new article it's from May of 2020. And it says Understanding Non- radiographic Axial Spondyloarthritis. So again, there'll be a link to it below and with so many patients that will move from non-radiographic axial spondyloarthritis to Ankylosing Spondylitis as is currently the current terminology is, it's really important to understand the progression of non-radiographic axial spondyloarthritis. So, if you're not familiar, this is an article I found from Creaky Joints and I want to touch base on a couple things. We do know that “It takes people on average seven years to be diagnosed with non-radiographic axial spondyloarthritis”. They can be told they have all sorts of things from rheumatoid arthritis to fibromyalgia, to just a whole litany of diseases can be presented before they actually settle upon non-radiographic that can be possibly attributed to the doctors not really understanding of axial spondyloarthritis and how it breaks down or it can be just attributed to your symptoms and how they present themselves. All of it is part of this whole package of being diagnosed. And that length of diagnosis is because well the disease causes you know, the different symptoms to be telltale symptoms like back pain, there's no visible damage on the X rays, as I mentioned before, and that's where the term non-radiographic comes from. We know that this differs from the Ankylosing Spondylitis on the far end of the spectrum in that there is visible damage, as I mentioned previous and so it's easier for the doctor to pinpoint what's going on. But just because non-radiographic can't be seen on x rays, that doesn't mean your pain is diminished, and you have some milder form of the disease. Quite the contrary, you have just the same type of symptoms and disease play out. You just don't have that fusion showing, but you get all the pain. So you're very well aware that the pain doesn't diminish just because there's not fusing overall the disease is similar. As I said, you're going to have the pain, the fatigue, the stiffness, and the impact that it can have on your life is basically the same as what a person was. If diagnosed Ankylosing Spondylitis is going to have and again, the real difference lies in whether the damage incurred by the inflammation shows on x rays. It can also take up to 10 years for x rays to show damage from such inflammation. So doctors can also use the MRI to help make the non-radiographic axial spondyloarthritis diagnosis earlier that early diagnosis is important because if it has all that time to fester and build up in you that uncontrolled inflammation can affect as you know, heart, eyes, lungs, everything. So what you don't want to do is have that uncontrolled inflammation running wild in your system. We do know that with non radiographic it's not just an early stage, the belief pattern used to be that non radiographic was separate and not just an early stage of AS there's debate as to whether non-radiographic and AS you know, as I mentioned, are two separate diseases or are they one along that spectrum and the prevailing theory is that non-radiographic and AS on the same disease spectrum, as I mentioned previously, but having non-radiographic spondyloarthritis is not always a precursor that evolves into AS, as I said, about half of the people will develop AS with it. So the hard part what we don't know now is whose going to develop it, why did somebody develop it and this other person did not. Those are the things that we're really going to have to have the doctor’s study for us as we go forward. Biologics and everything are great, but behind the scenes, they need to be determining how it progresses, why it progresses. So you know, for instance, some patients may develop worsening inflammatory back pain or develop other symptoms like enthesitis, which is the inflammation of the sites where tendons and ligaments attach to the bone uveitis, which is inflammation of the eye or even inflammatory bowel disease. Some patients may go through periods of remission and relapse, doctors will monitor for pain and functionality and the daily activities and the presence of whether the symptoms seem to be coming back. Symptoms usually occur because there's inflammation of the tendons or joints as rheumatologists Paul Byrd and associate professor at St. George and Sutherland Clinical School in Sydney, “that inflammation lead to an apparent worsening of symptoms, but it may not lead to permanent symptoms that occur due to damage that can be seen on an X rays or MRIs”. So, again, you may get flares, they may be painful, they may be hurt, but they may not lead to damage. So, you may not actually progress on that spectrum from non-radiographic to axial spondyloarthritis you may not progress on that spectrum from non-radiographic to Ankylosing Spondylitis. One thing I found interesting is in the article they talked about can treatment for non-radiographic prevent disease progression. And the short answer is, we don't know more research is needed as the article says there's some preliminary research that suggests Yes, so it would be very cool if using biologics or some treatments similar that we're able to help prevent the actual movement down the spectrum to Ankylosing Spondylitis cut back on the inflammation you're having reduced the pain and hold the disease at bay. That would be fantastic. 

So far, much of the available research is focused on whether treatment prevents disease progression in With as more data is needed on non radiographic patients specifically, we need to better understand a How do non radiographic patients respond to treatment in terms of symptom management and quality of life and be whether that treatment prevents non radiographic from progressing or causing radiographic damage. So, at this point even though treatment for non radiographic axial sponder, arthritis and ankylosing spondylitis should be similar people with non radiographic may respond differently, generally less predictable to treatment with biologics such as TNF inhibitors than those with AS. Again, there's lots of research that's going to be coming out. It's really important that these companies get the support from people trying to use the medications, get the feedback they need, that you're keeping up with your doctors, letting them know what your symptoms are. That way they can continue to work on these medications and hopefully develop them and figure out what's going on inside of us from knowing what's going on inside to how do we stop at our control with going on inside this article will be linked in the show notes. It goes on to talk about a lot more of items like lifestyle changes, whether it be exercising regularly eating right, quitting smoking seems to be a big thing. So again, you can read further in the article, it'll be in the show notes. 

The other thing I'll have a link to is a website I came across and it is marked for us healthcare professionals only, but it's facts about axial spondyloarthritis. And it's an amazing website. It talks about the disease spectrum, the disease burden, identifying gender differences and resources for the doctors. I am going to suggest that now this website, just so you know, this website is created by Novartis. So be aware of that I would go so far as to suggest that everyone share this with their healthcare professional and if they start going off about well, you don't have as nope Look at this. I think I've got axial spondyloarthritis but in the spectrum of it, I'm just on the far say left hand side of it with non radiographic I haven't progressed to as So that's going to take a change in the doctor's thought processes. It's going to take a change in us as patients trying to figure out as we go through and trying to figure out what we have to make sure that we are absolutely using the correct terminology so that you don't confuse the doctor and then you don't get upset when the doctor misunderstands what you're really trying to get at. So I really hope everybody will take this to heart look at this and understand that I think we're working now under the umbrella of axial spondyloarthritis as the the understanding of this disease progresses, one of the things they mentioned is that at least