Hello and welcome to this episode of The Ankylosing Spondylitis Podcast. How's everybody doing here in the Northern Hemisphere, I'm in North America and we're having summer, the heats going and man, it feels really, really nice. I know for you in the southern hemisphere, the winter is kicked in. So in areas like Australia and so forth, you're getting a cooler temperature. So I hope that's nice. I hope you guys had a great summer. And overall, you know, I hope it helps with all of the arthritis and all the issues that everybody's dealing with.
Well, in today's episode, I wanted to delve into a subject that I think might be of interest to a lot of people when they look at the boards on Facebook quite a bit. I see people that say, I know I have Ankylosing Spondylitis. I know I've got it. But my rheumatologist won't give me a diagnosis. I have all the pain. I have all the, you know the symptoms, but he or she just won't tell me I have Ankylosing Spondylitis. Why is that? It's frustrating. It's delaying stuff. Well, I'm going to switch it around a little bit. Say that not in all cases, but maybe your rheumatologist is not wrong. Maybe you don't have Ankylosing Spondylitis. But maybe you're dealing with non-radiographic axial spondyloarthritis. Wow, say that multiple times real fast.
What is it and how is it treated? And that's what I want to cover today because you know, it might be that for some when you go at your doctor saying I have Ankylosing Spondylitis, I have Ankylosing Spondylitis, why won't you diagnose me? They're thinking and only trying to look at maybe not correctly, but they might only be looking at the Ankylosing Spondylitis as the possible outcome. And when the pieces don't fit, even though most of the pieces of the puzzle are there, there are maybe a couple of very key pieces that are missing. You walk away frustrated because you think that I've got this ankylosing spondylitis and the doctors just not listening to me and not validating what I feel. Well, that's where this term that I've covered in several episodes recently, axial spondyloarthritis comes in. That's that umbrella term that covers nonradiographic axial spondyloarthritis and ankylosing spondylitis. What's the benefit of me knowing about the difference and let's deal with that because I think it's really important when you think of inflammatory arthritis like rheumatoid arthritis you often think of it as affecting small joints, the hands and the feet. Those are usually the first I think of when I think of rheumatoid arthritis nonradiographic axial spondyloarthritis is a different kind of inflammatory arthritis. It falls under an umbrella category that I just mentioned the axial spondyloarthritis. Well, nonradiographic is a type of inflammatory arthritis that causes lower back pain among other symptoms. There's your exact same symptom that you might encounter with ankylosing spondylitis, that lower back pain, that hip pain, the sacroiliac joint pain, you know, all that can fall into both of these nonradiographic, there are symptoms but no visible damage on the X rays. That's the big key takeaway right there is your rheumatologist could be looking at your x rays and saying I don't see any damage, you know, maybe you have fibro or, and they go off on a tangent because they're not thinking nonradiographic. And that's where you, as the patient have to kind of work backwards with the doctor and maybe walk them and say, well, if you're saying I don't have Ankylosing Spondylitis is nonradiographic a possibility. So that's one thing you can start off with, you know, MRIs can help diagnose nonradiographic axial spondyloarthritis, but sometimes they too can be negative, and that can really, really throw a diagnosis off. And that's what can make this so challenging and so long unfortunately for some people to get a diagnose. The good news is though there are treatments that are transitioning from the Ankylosing Spondylitis side of the house over the nonradiographic and they're being approved to help on the biologic side. When we think of the rheumatoid arthritis. We think of it affecting hands, feet, things of that nature with nonradiographic axial spondylitis. It falls under an umbrella category of diseases called spondylosis, which includes different types of arthritis with one distinguishing feature. There's almost always inflammation in the spine. Back Pain is the hallmark of the nonradiographic axial spondyloarthritis, which sets it apart from any other type of inflammatory arthritis, says Dr. Malik, who's a rheumatologist at New York University langerhans psoriatic arthritis center nonradiographic means the disease causes symptoms, but there's no visible damage on x rays the way there is with related type of inflammatory arthritis called ankylosing spondylitis.
Axial refers to the joints that the disease primarily affects the spine, the chest and the hip bone. Spondyloarthritis is a family of inflammatory arthritis that affects the joints and entethies which are tissues between the bones, the ligaments and the tendons. What are some of the symptoms of nonradiographic axial spondyloarthritis to differentiate nonradiographic from any other kinds of back pain? There are a few telltale signs based on when the pain occurs, how long it lasts, and the age that it first strikes and what makes it feel better timing of the pain, back pain and nonradiographic axial spondyloarthritis can wake you up in the middle of the night and hurt in the morning you may feel morning stiffness that makes it hard to get out of bed and get moving. Rest verse exercise, mechanical back pain such as from a strain or a slip disc tends to feel better when you're resting or not exerting yourself inflammatory back pain from nonradiographic axial spondyloarthritis, on the other hand, often feels better when you move around, you know that move it or lose it exercise are stretched, all of that is good. The other thing is age of onset, nonradiographic axial spondyloarthritis symptoms often first strike in late adolescence or early adulthood, often before the age of 40. Entitihisitus is inflammation of the enthitisis where bone attaches to a tendon or ligament is another factor that sets spondyloarthritis like non radiographic Apart from other types of arthritis as the disease progresses, from nonradiographic to later ankylosing spondylitis stages, and to the situs can cause the spinal bones to fuse together and make patients lose mobility because the pain comes from inflammation from the immune problems rather than mechanical wear and tear the joints other body parts can hurt too, especially the knees and the heels. Inflammation from nonradiographic axial spondylitis can also cause other symptoms that go beyond the joints, psoriatic arthritis and enterapathak, which is inflammatory bowel disease related arthritis fall under the spondyloarthritis umbrella and tend to overlap with non radiographic and I see many of you posted I have this I have that that ties back into the nonradiographic. If you're not seeing the damage on MRIs or X rays, and then you're telling your doctor I know I have AS the doctor saying, No you don't. It's a communication gap. We need to get on the same page and use the right terminology to help guide our Doctors to where we think we're at. So about 15% of nonradiographic patients experience uveitis, which is another big one, which is eye inflammation that can cause redness, pain and blurred vision. And I've done several episodes about that that will be linked in the show notes. Other patients might experience they're called sausage digits, you know, where the fingers or toes swell up from inflammation.
So what are some causes of nonradiographic axial spondylitis? Well, obviously, many people have never heard of the phrase nonradiographic axial spondylitis. So it's not surprising that people often chalk up you know, the back pain and the other symptoms to other types of health issues, sprain too much, you know, whatever they whatever they decide, usually mechanical causes, strain sprains, you know, slipped discs, but axial spondyloarthritis tends to take a long time to be diagnosed. That's because the X rays, the MRIs, that can all show negative so you're still having the pain, you're still having the symptoms. But you're not able to get diagnosed and that's why see some of these long diagnosis times I believe, excess bundles artist tends to take a long time to be diagnosed an average of seven years between first symptoms and diagnosis, according to research presented in 2018, and it can take years for inflammation to do visible damage, which makes it hard for doctors to pinpoint the cause rather than being due to mechanical problems and your back non radiographic often occurs because of chronic inflammation. The non radiographic is a cross between like an auto inflammatory and autoimmune condition immune system gets confused, thinks the body is being attacked as the body produces inflammation to protect against the non existent attacker. healthy tissue is damaged in the process. doctors aren't sure exactly, you know what causes the immune system to act this way. With non radiographic though there seems to be a genetic component. For example, the gene variant HLA dash b 27 is common in people with spinal arthritis. You know, research is It develops may turn up other genes, but you know, there's that common thread. Now, that doesn't mean that if you're negative on HLA b 27, and you're negative on your x rays, and you're negative on an MRI, that you don't have non radiographic, so sponder arthritis just means more digging has to be done more looking at the overall lifestyle of what you're encountering. And that's why I say it's very, very important. If you think you have something wrong, start a journal going into the doctor and tell them how you feel that day or how you felt in the last week or two doesn't say a whole lot. Start a journal figure out week after a week, what you're doing what you're dealing with, check things with your diet, remove foods and see how you feel. Add things in and see how you feel and you know, just keep tweaking with it because all that information is going to help that doctor diagnose that nonradiographic axial sponder arthritis, if that's what you're dealing with. So then we get to the difference between nonradiographic axial spondyloarthritis, ankylosing spondylitis, which is what a lot of people jump to conclusions that here's what I got. They get upset when their doctor tells them no you don't have ankylosing spondylitis and they start checking off. I have this symptom I have this symptom, this symptom, the doctor you know, that that I think creates some of the confusion. So nonradiographic axial spondyloarthritis is generally thought of as an early stage of Ankylosing Spondylitis, another type of spondyloarthritis. The main difference between the two is that as involves bone damage that can be seen on x rays nonradiographic does not because the disease hasn't progressed far enough yet. Spider arthritis starts the joints before affecting the bones. But x rays can't capture the early damage, says rheumatologist Hilary Norton medical director of Santa Fe Rheumatology instead rheumatologists often use MRIs to spot swelling in the softer tissue traditionally, to be diagnosed with as one would need to have an X ray changes which could take 10 years From symptom onset to develop, says Dr. Norton, who herself has ankylosing spondylitis. The CT and the X ray show bone damage after the inflammation is caused damage, but the MRI shows active inflammation. Still, MRIs aren't perfect either. Some patients will show swelling that isn't related to axial spondyloarthritis, others have no swelling do seem to have the disease. In the latter case patients who are monitored and sometimes take another MRI a later date says Dr. Norton research shows that it could take more than a year for MRIs to show visible swelling. So doctors look at the rest of the clinical picture, including symptoms, history and genetic presence like having the HLA-B27 gene as the damage progresses, you know sponder arthritis can move along the spectrum from non radiographic to radiographic though it might never progress there at all over two to 10 years about 10% to 40% of patients with non radiographic axial sponder arthritis will develop ankylosing spondylitis According to a study that was in the expert review of clinical immunology symptoms don't change much from later stage, non radiographic to early stage ankylosing spondylitis. Those as gets worse, the backbones can fuse together and make patients lose spine mobility, says Dr. Malik.
So how is nonradiographic diagnosed? There's no single definitive test that can clinch a nonradiographic axial spondyloarthritis diagnosis, so rheumatologists look a combination of clinical symptoms, blood testing, and imaging. And that's why I say it's important for you to do as much of the work as possible in documenting your conditions on a day by day basis for the doctor. Doctors might order blood tests that measure inflammation in the body, such as C reactive proteins, and endocrine sedimentary rates, these tests can pinpoint where in the body the inflammation is occurring, though, so rheumatologists need to take results in context of the whole clinical picture. They should also do a blood test. For the HLA-B27 gene, which is found in about 83% of people with axial spondyloarthritis, according to a study that was done, but again, this test alone can't confirm a diagnosis, because about 98% of people who carry the gene will never develop spondyloarthritis and the HLA-B27 gene is less prevalent in certain groups of people with axial spondyloarthritis, such as African Americans. In most cases, doctors will also use an MRI to help confirm a diagnosis of non radiographic because MRIs can catch inflammation of the sacroiliac joint of the pelvis before the disease progresses enough to see bone fusion and the X ray, but you can still have non radiographic even if the MRI isn't positive and doctors may start treatment. If a physician's clinical suspicion is very high given symptoms and other clinical characteristics. For example, the patient meets the assessment of sponder arthritis International Society clinical criteria simply does not have an alternative explanation for symptoms. We do offer a trial and says physical therapy etc, says Dr. Malik And finally, how is nonradiographic axial spondyloarthritis treated? Well at this point treatment for nonradiographic is focused on addressing pain rather than stopping disease progression. And that's actually I'll jump into an interesting piece. This article that I was using and reviewing for some of this information was done in late 2018. Since then, there have been three biologics that have been approved for use in nonradiographic axial spondyloarthritis, the newest one just approved last week, I think it was last week was Cosentyx, and that's now joining Cimzia and talks as the three biologics that are available to be used to treat nonradiographic spondyloarthritis with the Cosentyx and the Taltz just coming on in June of 2020. So I mean, just like now, so that gives three biologic opportunities. And that's one thing if you are talking with folks you have to remember telling them to go out and ask their doctor for Humira or Enbrel or some of these others, those may not be approved for nonradiographic. So I would encourage you to really try to focus in if you're not getting that as diagnosis because the doctor keeps saying and x rays are negative work with them to start looking at nonradiographic if the NSAIDS don't work, the American College of Rheumatology recommends using TNF inhibitors, which are a biologic drug that I mentioned earlier. And then you know, some biologics are approved for treating ankylosing spondylitis, but because of they haven't been approved yet for nonradiographic it can be tricky to get insurance companies to cover the treatment. If you are dead set on trying something that is not approved yet, but as I said, there are three that are now approved. So that's a great start. So then again, other types of arthritis under the spondyloarthritis umbrella like psoriatic arthritis and inflammatory bowel disease, arthritis can be treated with biologics. Some doctors will maybe right up the work as that's the primary thing they're trying to treat hoping that this nonradiographic response as well so that's certainly an option that's out there overall if you're not getting the diagnosis and you keep going at the doctor saying I've got as I've got is changed the thought process in your mind and start looking at non radiographic as a possibility even if you have family members with as they might have already progressed through that non radiographic to the as you may just be the beginning stages of it or you may never make it all the way to a full blown a s unfortunately, you get to deal with all the fun stuff, the pain, everything that goes along with it only under the term non radiographic.
So I hope that is helpful for folks. I really appreciate you listening to the show. This one was a little longer but a lot of good information here. I wanted to get out to everybody and you can find the links to the article I referenced in the show notes as well as shows on biologics and uveitis that discussed past episodes that I've done also linked in the show notes. And as always, again, I thank everybody for listening around the world. It's just amazing to see the downloads come in from around the world and please go out to spondypodcast.com and sign up for the newsletter. Those numbers grow. I've got a new one coming out here in another week or so. So anyway, everybody, take care. Have a wonderful day and I look forward to talking to you soon.
What is Non-Radiographic Axial Spondyloarthritis – Creaky Joints, https://creakyjoints.org/education/what-is-non-radiographic-axial-spondyloarthritis/
FDA expands approval of secukinumab for nonradiographic axial spondyloarthritis – Healio - https://www.healio.com/news/rheumatology/20200617/fda-expands-approval-of-secukinumab-for-nonradiographic-axial-spondyloarthritis
Epiosde 50 Axial Spondyloarthritis – The Basics - https://player.captivate.fm/episode/c0e786dd-fd64-4e0c-bfa4-a4f3b58d2230
Episode 048: Iritis/Uveitis - A discussion with Dr. Grace Levy-Clarke from Tampa Bay Uveitis - https://player.captivate.fm/episode/d32f771c-72e4-4225-aa3a-9f53e10fcbca