Ankylosing Spondylitis - What Patients and Doctors Often Miss

Most people don’t realize that ankylosing spondylitis (AS) isn’t just a bad back — it’s a systemic inflammatory disease that can silently attack multiple areas of your body. 

If you or someone you love experiences chronic back stiffness, pain that improves with activity, or nighttime waking, this episode could save you years of struggle.

Dr. Vishnuteja Devalla, a leading rheumatologist specializing in autoimmune conditions, breaks down the misconceptions and hidden signs of AS, revealing how early diagnosis can transform outcomes. 

You'll discover why AS affects nearly 40% of women, not just men, and how systemic inflammation increases the risk of osteoporosis, eye problems, and even bowel disease — often before back pain even appears.

We delve into the differences between mechanical back pain and inflammatory pain, and clear up confusing terms like axial spondyloarthritis, radiographic vs. non-radiographic forms, and why blood tests like HLA-B27 don’t tell the full story on their own. 

If you’ve been dismissed or misdiagnosed, this episode arms you with the questions to ask and the evidence to advocate for yourself.

Learn about the life-changing treatments available: NSAIDs, biologics, JAK inhibitors, and emerging therapies — plus why exercise is your best ally, not your enemy. The stakes couldn’t be higher: early intervention can prevent long-term damage, improve quality of life, and eliminate the fear of fusing or ending up in a wheelchair.

 Whether you’re battling persistent back pain or supporting a loved one through diagnosis, this episode offers clarity, hope, and practical steps to take control of AS today. 

Don’t let decades of misdiagnosis define your life — knowledge is your best weapon.
 

Chapters & Key Notes: 

• 00:00 - Introduction: Overview of ankylosing spondylitis (AS) and its impact.
• 00:28 - Guest Introduction: Understanding AS.
• 01:21 - AS Explained: Systemic inflammatory condition affecting the spine and sacroiliac joints.
• 02:10 - AS vs. Mechanical Back Pain: Differences and key features.
• 04:19 - Clarifying Terms: Axial spondyloarthritis, radiographic vs. non-radiographic.
• 06:10 - Beyond the Spine: Effects on eyes, gut, skin, and osteoporosis.
• 07:52 - Early Signs & Red Flags: Importance of early diagnosis.
• 10:00 - Diagnostic Tools: Blood tests, imaging, and HLA-B27 gene testing.
• 14:42 - Myth Busting: Gender effects, progression, and treatment possibilities.
• 17:32 - Treatment Journey: From NSAIDs to biologics and emerging therapies.
• 23:41 - Mental Health & Support: Addressing psychological well-being.
• 28:14 - Resources & Specialist Connections: How to get help and support.

Connect with Dr. Vishnuteja Devalla: https://rheumatologistoncall.com/our-team/dr-vishnu

Transcript

Dr. Diana Girnita: Welcome back to Thriving with Arthritis podcast, the show where we cut through the noise, we bust the myths, and we give you actionable steps to live better with arthritis. I'm your host, Dr. Diana Girnita, and today we're going to deep dive into one of the most misunderstood, misdiagnosed, and underestimated forms of arthritis, which we call ankylosing spondylitis or AS. And I brought one of the best rheumatologists, Dr. Vishnu Teju Devala, who is specialized in inflammatory arthritis and spondyloarthritis. He's passionate about diagnosing people early to empower patients and also change their outcome if they live with arthritis and other autoimmune diseases. Dr. Devala, welcome to the show.

Dr. Vishnuteja Devalla: Thank you for having me.

Dr. Diana Girnita: Today, we're gonna answer a lot of questions that I know patients are Googling at 2 a.m. These are questions that most of the time they are afraid to ask their doctors, and we're gonna bust the myths that people have for many years with these forms of arthritis, ankylosing spondylitis. Let's get into it. So Dr. Devala, for someone that never heard about ankylosing spondylitis, can you break it down in plain English? What is exactly happening in their body?

Dr. Vishnuteja Devalla: Ankylosing spondylitis is a systemic inflammatory condition. It's characterized by pain and inflammation that is restricted to the spine and the sacroiliac joints. It's a chronic inflammatory disease that can cause a lot of back pain, a lot of joint pain even, and we'll get into more of that. The word really refers to ankylosing, which means fusion of the spine, and spondylitis means inflammation of the vertebra. So when we break it down, it means inflammation of the spine. The pattern of the joint pain and the back pain relates to this inflammation.

Dr. Diana Girnita: Now, how is ankylosing spondylitis or AS different from the regular back pain, the degenerative type of this disease? Because many people, I know, get misdiagnosed for many years. What is the key difference?

Dr. Vishnuteja Devalla: Back pain is one of the most common complaints we get, and 80% of the US population will deal with back pain at some point in their life. When we think of back pain, we usually in rheumatology put it in two categories: mechanical back pain and inflammatory back pain. Mechanical back pain spans from structural abnormalities of the spine, either arthritis of the facet joints, degenerating discs, and paraspinal muscle tenderness. That's about 95% of back pain overall. The other 5% is where we come in, and we put those folks in the inflammatory back pain category. This is the key differentiator between figuring out if you have inflammation or wear and tear arthritis. When we think of inflammation, some of the things we usually come across are stiffness, especially in the morning, stiffness that sets in after you've been sitting for a long period or laying down for a long period, and stiffness that improves with activity. Alternating pain in your lower back, buttock area, and hips, and when other joints are involved, swelling, redness, and warmth. So when it comes down to it, we are trying to tease out the features of the back pain and put these folks in either the inflammation category or the mechanical category.

Dr. Diana Girnita: Now we hear about all these terms, AS, axial spondyloarthritis, non-radiographic axial spondyloarthritis, and we use them, especially we as rheumatologists, interchangeably. Can you clear up the confusion that many patients will have?

Dr. Vishnuteja Devalla: The term axial spondyloarthropathy is like an umbrella term. It refers to inflammation of the axial spine, which includes the skull, the spine, and your sacroiliac joints. We are moving away from the radiographic versus non-radiographic spondyloarthropathy because it doesn't change what we do. Radiographic means evidence of damage on an X-ray. If you have damage on an X-ray, we call that radiographic spondyloarthropathy. If you don't have damage on an X-ray, we say non-radiographic. But we're moving away from it because we still treat these patients the same way. These terms don't tell us the whole story. Women tend to show damage later on, so these terms don't really help us. But that's what they mean by radiographic versus non-radiographic. Interestingly, half the people that present to us have some form of damage on X-ray. That is staggering even to this day. Half of the patients that come to us with ankylosing spondylitis already have damage on an X-ray, and the other half don't. That is a staggering number.

Dr. Diana Girnita: And just by looking at the X-rays, you cannot say that they have the disease. That's why we do the MRIs, correct? What other parts of the body can AS affect beyond the spine? Because I know many people are shocked to find out that AS is not just a back problem.

Dr. Vishnuteja Devalla: Correct. This is something even I've seen clinicians run into often. All of the conditions we treat are systemic inflammatory conditions that manifest with joint pain and back pain and areas of the body involved with inflammation. In terms of ankylosing spondylitis, you're right. It's not just back pain. About 40% of these patients can have a condition called uveitis, which is inflammation of the eyes. Even up to 20% of these patients can have an inflammatory bowel disease like Crohn's disease or ulcerative colitis. One in 10 patients with ankylosing spondylitis can also have psoriasis. So there's a little bit of overlap there. Beyond back pain, this inflammation can also attack the hips, the hands, any joint in your body. One area where I see a huge need for education is about 50% of patients with ankylosing spondylitis develop osteoporosis at a much earlier rate. This is even more important in addressing in women. It's a systemic inflammatory condition that attacks multiple areas in your body.

Dr. Diana Girnita: Now let's talk about early signs of AS because many people dismiss these early signs as I slept wrong or I'm getting older. What should people know that are red flags?

Dr. Vishnuteja Devalla: This is so important because there's a huge delay in diagnosis, and some of these patients go almost a decade before they get diagnosed. If you think about that number, it's unbelievable, going a whole decade without being diagnosed and dealing with inflammation. It's important to keep these red flags in mind. When I coach my patients to look out for certain signs, this is what I usually say: chronic back pain, which is usually back pain that lasts more than three months. When you experience chronic back pain below the age of 45, that's a red flag on its own. If you're dealing with chronic back pain and you're below the age of 35, that's a big red flag. Another important feature is improvement of your back pain as you become active and as you stretch. That's another feature I coach my patients about. The other component is stiffness in the morning. As you know, that's universally true for a lot of our conditions. In this case, waking up with significant back stiffness. A lot of my patients describe it as waking up as the Tin Man; they feel like their back is completely fused, and it takes them 30 minutes to one hour just to loosen up their back. If you're experiencing these symptoms, it's important to reach out to a rheumatologist. Where we trip up as clinicians is really because of the enormity of the back pain. It's 80% of us that will deal with back pain. So it's easy for us to put all of the back pain together and not really dig into it too much. But there's a bigger problem there too. Clinicians don't have enough time to spend with the patients, which may be playing a role here. But those are the red flags I would keep in mind. Chronic back pain below the age of 45, improving with movement, and waking up with significant back stiffness that takes more than 30 minutes to loosen up. A lot of patients also wake up in the middle of the night with back pain. That is another big red flag. Those are things I would keep in mind.

Dr. Diana Girnita: As far as I know, the average time to get diagnosed with AS is about seven to 10 years, correct? But many patients do think it's because of different activities they do during the day. I'm glad you mentioned those red flags because that will put in their minds that once they hit 40, they didn't get old overnight. And that's why they have the red flags to think about. Now, if you are a patient with these kinds of symptoms and you go to doctors and tell them about their symptoms, what would you say to them to continue to advocate, to continue to show the symptoms? How would you advise them to look for help to get the answer to their problem?

Dr. Vishnuteja Devalla: It's absolutely important that you continue to advocate for yourself. Because of that minimization of the pain, that's where the delay comes from. I want patients to really understand there's a good chance that you may wait seven to 10 years before you get diagnosed. So it's important to advocate for yourself. Some of the things I would mention to their clinician are some of the things we just talked about. They can talk to their doc and say, "Hey doc, my back pain is there without any injuries, without any trauma. It just came out, and I wake up every morning with a lot of stiffness, and there's no real reason to have this kind of development of the back pain." I would encourage them to either continue to advocate for themselves, and if they keep running into a wall, which a lot of our patients do, reach out to a rheumatologist and reach out for some kind of guidance to get to the bottom of it.

Dr. Diana Girnita: The other thing I advise patients is to keep a diary of their symptoms. For the next 10 days or 14 days, write down your symptoms, write down what you are experiencing every single day, because delivering this kind of information will put in the mind of a physician that there is a pattern of this back pain, which will raise more questions to physicians. But I have to agree with you, the time that people and doctors have in the traditional practice is too short to sort out all the causes of back pain, and that's why these patients get missed.

Dr. Diana Girnita: Let's switch a little bit towards diagnosis. To make the diagnosis, we need blood tests, and we also need X-rays. Most patients get an X-ray, and the X-ray is negative. But other patients will get blood tests. One of the most common blood tests that people get with back pain is the HLA-B27, correct? And if it gets tested and it's positive, they are told you have AS. But if it's negative, they are told that you don't have AS. So what do you think about that? What should patients think about the HLA-B27 test?

Dr. Vishnuteja Devalla: Yes, I have not seen a patient with back pain that did not have this test before they even see us. I try to educate the patients on what this is. HLA-B27 is a gene, and it's a very common gene. A lot of the general population have this gene. To put it simply, having the gene does not mean you have ankylosing spondylitis. It does increase the risk of ankylosing spondylitis, but having the gene by itself does not mean you have it. Not having the gene does not rule out ankylosing spondylitis. So we have to interpret that test in the clinical setting, in the context. That is so important. We make so many decisions based on the physical exam, the history, and the context. The labs are there to help you along the way, but they rarely ever rule in or completely rule out a condition.

Dr. Diana Girnita: Let's move into busting some of the most common myths that I hear about ankylosing spondylitis. I want you to tell me, is it true or is it false? Ankylosing spondylitis affects only men. True or false?

Dr. Vishnuteja Devalla: This is absolutely false. 40% of the patients are women. It's important that we keep that in mind. This is something I come across often with other clinicians. It's important for us to keep in mind that almost half the patients, 40% of the patients, are women.

Dr. Diana Girnita: Now, true or false, if you have AS, will you eventually end up in a wheelchair, completely fused?

Dr. Vishnuteja Devalla: False. There's so much that we can do. That's why it is important to diagnose early. The time of diagnosis plays such an important role here. We can't say that nobody will ever fuse because people come to us at different stages of their inflammation and different stages of their disease course, but if they come to us early, their life will be absolutely no different than anyone else's.

Dr. Diana Girnita: Another one, true or false. There is nothing that you can do for AS. You just have to live with pain.

Dr. Vishnuteja Devalla: This is also absolutely false. There's so much we can do. There are medications, lifestyle changes, exercise. There are so many things that we can do to give the patient their life back.

Dr. Diana Girnita: Another one, and this one is what people Google all the time. Is it true or false? Can diet cure ankylosing spondylitis?

Dr. Vishnuteja Devalla: Diet cannot cure ankylosing spondylitis, but it is very much an adjuvant therapy to systemic anti-inflammatory medications. Diet is very supportive for inflammation, but by itself, it cannot treat ankylosing spondylitis.

Dr. Diana Girnita: And the last one, true or false? Is exercise going to be dangerous for AS?

Dr. Vishnuteja Devalla: False. Exercise is very much part of the treatment protocol for ankylosing spondylitis. We really encourage people to move more, stretch more, and exercise because that actually helps reduce inflammation just on its own.

Dr. Diana Girnita: Let's go to the next topic, which is the treatment of AS. I know that there are so many things that we can learn from you, but can you walk us through the treatment journey from the very first line of defense to the biologics? How does that look for someone that is just newly diagnosed with AS?

Dr. Vishnuteja Devalla: Our first line of defense is NSAIDs. We've been using NSAIDs for ankylosing spondylitis for almost 30 plus years now. They have a lot of benefits. The main benefit is they work right away. They target inflammation right away and help stop the inflammation in its tracks and reduce further progression. We use medicines like diclofenac, meloxicam, naproxen. NSAIDs are very much our first line of defense. If our patients are experiencing inflammation despite being on NSAIDs, that's when we usually pivot to biologics. The other reason to go to biologics is if they cannot tolerate the NSAIDs. NSAIDs have a lot of side effects, and a lot of folks can't handle the higher doses that are really required to treat ankylosing spondylitis. This is another reason why we jump right to biologics.

Dr. Diana Girnita: Biologics have been a game changer for ankylosing spondylitis. But can you explain to us in simple terms what is a TNF inhibitor or what is an IL-17 inhibitor and who is a good candidate for biologics?

Dr. Vishnuteja Devalla: Essentially, most patients are going to be good candidates for biologics. Biologics are medications created in a lab that mimic our own proteins. That's why we call them biologics, and they target different inflammation pathways. The anti-TNFs target the TNF inflammatory pathway. We know from studies that folks with ankylosing spondylitis have high levels of IL-17 anti-TNFs in their inflammatory fluid that surrounds the spine and other joints. This is why these medications work so well. To put it simply, they're just different pathways of inflammation that are active in your body. Blocking these pathways results in less inflammation in the spine.

Dr. Diana Girnita: There is a lot of research happening in AS and for inflammatory arthritis. There is talk about CAR T cell therapy and about JAK inhibitors, and many patients are interested to find out about them. Can you give us a few insights about what's gonna happen for the treatment of AS?

Dr. Vishnuteja Devalla: JAK inhibitors have been playing a pivotal role in how we treat ankylosing spondylitis. They have been really helpful in reducing inflammation. The way they work is they essentially work on a different pathway for inflammation. There are a lot of new JAK inhibitors that are coming out specifically for ankylosing spondylitis, which is really helpful. As far as the CAR T therapy goes, CAR T therapy at this moment does not play a big role in ankylosing spondylitis because the inflammation is different. The cells that cause inflammation in ankylosing spondylitis are different than cells that cause inflammation in rheumatoid arthritis or lupus. So at this moment, CAR T therapy does not seem to play a huge role, but CAR T therapy is also evolving, and they can target different inflammatory pathways in the future. So it may play a role in the future, but at this moment, it's not very helpful.

Dr. Diana Girnita: And we have to tell people that the JAK inhibitors are the pills versus the TNF alpha inhibitors or IL-17 inhibitors that are only injectable medication. When we talk to patients, many times they are interested in taking a pill once a day rather than having an injection every week or every other week or every month. A lot of patients are very, very scared about biologics or to use biologics long-term. You and I have a long experience with biologics, and we use them for many years. How do you address those concerns about the risk of infection, the risk of cancer, or any other side effects?

Dr. Vishnuteja Devalla: Every medication that we use in medicine will have risks attached. What I really try to tell patients is we only reach for a medicine when the benefits outweigh the risks. There is no medicine out there that does not have any risks. When it comes to biologics, the primary risk is an increased risk of infection because you are blocking a pathway of inflammation, and inflammation is also good for us in terms of helping us fight viruses and bacteria. Blocking that pathway does increase the risk of infections. These biologics do reduce our patients' immunity. What I tell my patients is that if you're otherwise healthy and if you don't have a lot of comorbidities, in practice, you're not going to get sick any more often than the average person. In practice, what we've also seen is that life-threatening illnesses are extremely rare in biologics. Most folks may get a cold or an upper respiratory infection a little bit more often than if they weren't on it, but these are very tolerable, and we usually counsel our patients to skip a dose when they develop these symptoms. They heal just fine and then restart the medications. As far as the cancer risk, that's been busted a while ago. The increase in cancer risk really comes from systemic inflammation and not so much the biologics. There's a really small group of patients that do potentially have an increased risk of developing cancers with these medications, but that's extremely rare. Now we know based on science that that cancer risk is because of the immune dysfunction, not so much the medications.

Dr. Diana Girnita: That's very true because people are scared about cancers or the risk of lymphoma. As you were saying, I want to also tell you that I dig deep into this subject and actually, there is not much data to support the increased risk of cancer. There is only one type of cancer that I advise my patients about. It's the skin cancer that is also increased because of the exposure to the sun. So I always tell my patients to do a skin exam every year. Make sure that you don't have new tags on your skin that were not there and put sunscreen with a high SPF if you are in a climate with a lot of sun.

Dr. Diana Girnita: We know that AS, we're giving this diagnosis to a young patient. The diagnosis of AS will cause a lot of stress. The fact that they will live in pain, unpredictable flare-ups, and the fact that they are no longer what they used to be is very scary, and it's going to affect the mental health of a patient. How do you counsel patients when you give that diagnosis of AS?

Dr. Vishnuteja Devalla: I try to tell my patients that we are going to get pretty close to the life that you used to know. Given that there's no irreversible damage, if they come to us early, I tell them that this is the best time in the world to have ankylosing spondylitis because there's so much we can do. Your life is going to go back to where it was. It's completely understandable that they're dealing with anxiety and depression because there's, as we discussed before, this huge delay in diagnosis. It's not like these patients are going 10 years without ever complaining and all of a sudden they're diagnosed. It's because they've been complaining, and the pain has been minimized, and it has not been recognized. When you hear so often that this is just regular back pain, it's not related to inflammation, you'll get through, you try PT, and if you start to experience that minimization, at some point you'll have to second guess yourself. You're looking inwardly and thinking, my God, is this something or is this nothing? That can add a ton of emotional stress. So what I try to tell folks is that we have wonderful treatments available to them, and we can stop the inflammation, we can stop it from getting worse, and we can work on getting your life back piece by piece. It's not going to come easy, but it is available to you. That life is available to you. It's there for you to get back.

Dr. Diana Girnita: Thank you for making those comments because it's really important for patients to know that they have options and the fact that they have been in pain is not going to be forever there.

Dr. Diana Girnita: Dr. Devala, if there is one thing that you wish that every single person, patients or their families or even their primary care doctors understood about AS, that they got it universally wrong, what would that be?

Dr. Vishnuteja Devalla: I really want people to know that it's not just back pain. This is very much a systemic inflammatory condition. One of the manifestations is back pain. Anyone dealing with chronic back pain that has some of these red flags should reach out to us. They should reach out to rheumatologists for a closer look. We have to make an effort to shrink that 10-year gap between onset of symptoms and diagnosis. That is too much, that's too long. So we have to work on shrinking that. I would encourage patients to reach out, reach out to a rheumatologist, reach out to your primary care doc, and discuss with them about ankylosing spondylitis because we're not talking about a six-month to eight-month delay in diagnosis. We're talking about a decade. It's a lifetime to me, especially in pain and inflammation. But what I really want people to know is it's not just back pain. There's so much to it. It's important that they come to us early so we can do something about it. We can prevent long-term damage.

Dr. Diana Girnita: Thank you so much for clarifying all these questions and busting the myths. If patients would like to see you, where can they find you?

Dr. Vishnuteja Devalla: They can find me on Rheumatologist on Call. We're really easy to find and reach out, and they don't need any referrals to come schedule with us. We usually are able to see them within a week.

Dr. Diana Girnita: Wonderful. It was a pleasure to have you again on the podcast, and I hope that I will have you in the near future to talk about other exciting topics in rheumatology and also to give hope to patients that are in need of a diagnosis and in need of the right amount of time and attention to diagnose them and to get the proper treatment. With that, I would like to close today's episode. If you have any comments, suggestions, or questions, you are very welcome to leave your comments at the bottom of this video. Thank you.

Dr. Vishnuteja Devalla: Thank you.