In this episode, I try to help newly diagnosed people with Ankylosing Spondylitis understand what their prognosis with the disease may be.
Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. Today, I wanted to first recognize the 105th country where we've received downloads from, and those came in the other day from Montenegro in Europe. And that makes, again 105 countries. So that's, again, amazing as we start to fill in the little dots of the missing spots where we have not had downloads from and it's just, again, amazing to see all of these places come together and just show that this disease doesn't recognize boundaries or anything else. It is completely open and willing to go anywhere it wants to go.
So with that, sometimes it's really good to look at the basics of what we're dealing with and as many know, I changed the name of the show from The Ankylosing Spondylitis Podcast to The Axial Spondyloarthritis Podcast to be more encompassing of the disease. Overall, I personally believe that this disease is a continuum, going from non-radiographic axial spondyloarthritis to ankylosing spondylitis. So in essence, that's why I changed the name of the show was to better reflect that. I personally believe that it's just one disease we're dealing with, it's just one spectrum. But with that, many in the medical field still discuss both having either non-radiographic axial spondyloarthritis or ankylosing spondylitis. So this show and next weeks show are going to be dedicated to both of these diseases. Today, I'm going to talk about Ankylosing Spondylitis prognosis, and basically what patients need to know.
And with that, let's kind of jump in this article is from Creaky Joints, and I'll have a link in the show notes. And as we know, ankylosing spondylitis is a chronic inflammatory disease and many questions and fears come up. And people wonder when they're first hearing that term being diagnosed, or trying to get a diagnosis. They wonder, you know, will this disease make me disabled? Will it affect my posture or make me hunched over? Can it affect my life expectancy or be life threatening? And the answer to all of those is maybe, because the regression of the disease is different in everybody. So therefore, well, everybody has a different prognosis. There are some generalities that we can look at and apply to our own conditions. So we know that doctors and researchers, they're still learning about the prognosis overall for ankylosing spondylitis, which is, as I just said, a form of axial spondyloarthritis. Axial Spondyloarthritis, for those of you new is an umbrella term for inflammatory arthritis that primarily affects the spine and the sacroiliac joints that connect the spine to the pelvis, causing pain predominantly in the back, hips, and buttocks area as well as other joints.
For me, when I was a kid, my si joints were the first things to be really attacked by this disease. And by the time I was all in my late teens, my sacroiliac joints were both completely fused up and an absolute mess. And so where does this inflammation come from? Well, your body's immune system is basically releasing chemicals into your blood and joints that causes pain, stiffness, and eventual joint damage. There are two main types of axial spondyloarthritis. As I mentioned earlier, there's non-radiographic axial spondyloarthritis, which is what next week's episode will be about, and ankylosing spondylitis, which is what this week's episode is about. Now, non-radiographic in its simplest terms just means that there's no visible damage to the joints on your x-rays, it doesn't mean you don't have pain, developing any type of potential damage to your body in the future. It just means that when those x-rays were taken, there was no visible damage. Once the joints are damaged on an xray and clearly visible, a person can be diagnosed with AS. This causes a lot of confusion for many folks. They'll sit there on forums I see on Facebook, and they'll say, but I have this and they're going down a checklist of things. I have this, I have this, I have this, but the doctor won't diagnose me with AS. Well that's because you don't have it, because you don't have visible damage to your joints. You may have non-radiographic doesn't mean that your pain is any less. It just means at this point, you don't have the visible damage on an xray. They can do some digging with MRIs and maybe see faint beginnings of it that the xray doesn't show. But up until that point, they won't put a diagnosis of ankylosing spondylitis on you and that's where I think some of the frustration with new patients comes into play. They want that diagnosis, but they don't have the visible damage and that causes some friction and misunderstanding. So, again, there is some debate as to whether, you know non-radiographic axial spondyloarthritis is simply early stage AS or whether they are two different diseases. Like I said, I believe it's just early stages of one disease. So what is ankylosing spondylitis progression? Well, the symptoms and progression of AS, you know, they can vary widely from patient to patient as I mentioned, and some people may experience very mild symptoms, be able to continue a fairly normal life of physically that is, with little to, you know, minimal pain, where others, they can have much more serious symptoms that continue to grow and get worse. And according to the latest research, significant progression in AS may affect around 20% to 30% of the overall AS patients. So AS starts with inflammation, the joints of the spine, the pelvis and causes chronic back pain. This is what is known as inflammation, inflammatory back pain. It has some unique traits compared with mechanical back pain, which occurs because of injuries or damage to the disc, nerves, muscles or joints to the back. Inflammatory back pain generally starts at a young age. Well, they say between ages of 40 and 45, but it can start much, much lower. Mine started around 10 and there's even people that have come on and mentioned that they were diagnosed in the before they even hit teenage years, it feels better with movement and exercise and gets worse with rest and inactivity. You can feel stiff first thing in the morning until you get moving, it can wake you up in the middle of the night in agony. That's something I've experienced many, many more nights than I can even count and then it can come on slowly and last on and off for three months or more in a flare. So you know, you'd really don't know how, or even when it's going to strike you the inflammation and AS often starts in the SI joints in the pelvis and gradually begins to affect more of the spine, including the neck over time. For me, my neck has been the last area to be affected and incredibly my knees, knock on wood have not been affected at all. That's something very good. My hips on the other hand, they've been pretty much devastated by it. But as the inflammation and AS endures, the joints in the spine can become damaged as well. And this can cause bony growths hardening and fusing that can affect flexibility and mobility. So I'll see this many times posted online and people say, should I go to the chiropractor to get my back neck, arms, whatever cracked? The answer to that really is it depends. Now the Spondylitis Association of America, they recommend no chiropractic care, but it might not be quite that simple. I would say if you have any fusing whatsoever in the back, neck anywhere, even your si joints, then chiropractic care is probably a no no, I would personally avoid it. But if you have not had any fusing, maybe you have non-radiographic and you are you know feeling the need to go visit a chiropractor. It might be okay consult with your doctor. But again, use the general rule of thumb of fusing, if there's fusing, I would avoid a chiropractor. And this fusing, in many severe cases of AS, you know, the patients are at risk of the fusion of bones in the spine. And that's what I have in both my lower and mid back is the bony overgrowth to what is called the bamboo spine. It's very evident visible in my xrays as that growth is occurred between all of the bones in the spine. And it's caused me to hunched over in my stance the way I walk, I'm all hunched over. So you know, you lose limited range of motion, you have joint destruction and that’s known as kyphosis, I think is how it's pronounced. But that's the hunchback that I have. Other joints such as your hips and shoulder movement can be impacted. Again in my case, my hips were like the second thing that were impacted, si joints first, hip joint second, by the time I was 23, I've had bilateral hip replacements. So there's a lot more known nowadays, there's things that I may have been able to do as a kid that might have slowed it down with eating and diet and things that just weren't known or understood, you know, 40 years ago. So I would encourage you to go back and look at listen to the episodes that I did on Yoga for AS, I would also encourage you to look at some of the episodes on diet and see if that doesn't allow you to better combat what's what's taking place inside your body.
You know, in this kind of progression, it can take many years to occur. My hips, let's say from 10 to 23 ish. By the time they were both fully replaced it's 13 years. My back is probably taken from that point up until my mid 30s. By the time I read started to notice issues with my back and there was little to no medication options back then there was an Naproxen, which is what I had in the early and mid 80s. Now there's all sorts of medications including biologics, I know many of you are maybe not okay with biologics or don't want to try them or want to the worst one you see is, ‘I'll put it off until I'm worse off.” Well, why? Because you don't ever have to get that worse off. If you use what's currently available. Try it. If it doesn't work for you, you stop it, you know, there are some certainly some side effects that can take place just like any medication. But again, discuss it with your doctor, see what's available there for you, and then also make the lifestyle changes. Again, I'll go back to Yoga for AS, which is a great page on Facebook. Both of those gentleman's Geoff and Jamie both have AS and live very, very full lives. So I would watch and they have great videos that show you how to start off with some basics of yoga and move into not super advanced things. If you're not able to you move at what your body says you can do.
Well, there's still much room for improvement. For many AS is starting to get diagnosed sooner, says Kari Sutter who's an MD and a rheumatologist at the Charles E. Schmidt College of Medicine at Florida Atlantic University. This means patients can start treating AS earlier, which helps limit long term inflammation, the damage that comes with it. She says we're intervening earlier and can stop the progression. So patients are doing better, which is very true. I saw studies that said many times, it's up to eight to nine years to get a diagnosis. Let's hope that that starts to come down as ideas and thoughts on AS and non-radiographic start to change. And this could lead to much quicker interventions; much quicker ability to get onto the medications that can help you and not just told us it's something that's in your head. So how does AS affect your quality of life? Well, really, how doesn't it, you know, inflammatory back pain alone, you know, even without the joint damage can have dramatic impact on somebody's you know, life and daily function. If you're not sleeping, you're tired, you're irritable, and your body is weakened and can be more susceptible to getting sick. There are all sorts of things that just a lack of sleep can bring on, let alone all the other items that go along with it.
So with AS, you have eventually a possibility of encountering difficulty with your daily tasks of living, as the AS progresses and your spine become stiffer, you lose mobility and that can mean a reduced range of motion. So whether that be turning your head to drive while looking right or left, if you're turning in a car, some other items you might encounter, you know, are getting dressed, you know, if you try to bend over to tie a shoe household chores, such as cleaning or doing laundry, you know, reaching for things overhead, even exercise and physical activity, all of those are affected with me, I can't tie shoes anymore, I have to have somebody help me. If I wear my tennis shoes, I have elastic laces so that just slide the shoes on. Household chores such as cleaning and laundry, I can still do them, but I get tired out much easier. So something that would take somebody that's not affected half an hour, 45 minutes to do might take me three or four hours. I know many of you have commented on things like that and can relate reaching things overhead. Well, I can't stand up straight so I can't look up. So if it's very high up on a shelf, I may not see it or be able to reach it. And then like many exercise and physical activity are very, very restricted for me with having a drop foot and neuropathy in my left leg, I can't walk very far, I use a cane. If I have to go even a little bit long distances, I'll use a pair of crutches. Another thing that's affected is work. AS is associated with poor health related quality of life as well as work and disability. You know, you could end up going on disability from having this for very long periods of time. You know, having to leave a job is three times more common among people with AS than in the general population found a study done in the Journal of the Annals of Rheumatic Diseases. This is particularly true for those who perform manual work that involves repetitive bending and twisting. Now some of this data comes from older studies to the 90s, though, and Dr. Liew goes on to say we're continuing to study what factors are related to work disability and what measures can be taken to allow people with AS to continue to work with any type of appropriate adaptations. And that's really key is one of the hardest things I had to decide was that I was no longer able to work when I went out on disability in 2017. That was a very challenging thing for me to come to grips with. So It's something that you may have to deal with. It's a, like I said, a very challenging, emotional issue to make. Another thing is relationships. It's, you know, not surprising pain, fatigue and other symptoms of AS can also take a toll on our social lives and personal relationships. Arthritis Power Research showed that 63% of AS patients reported that they have difficulty spending time with friends and 47% said they had difficulty spending time with family. This can impact our mental health and our mood. In fact, a study that was done in 2019 found that AS patients have more than double the risk of depression. So what are the factors can affect AS prognosis and progression? Well, because AS progress is different from person to person, researchers are continuing to study which factors may help predict which patients are more likely to experience a worse prognosis. Some of these factors may include sex and age, studies suggest that being a male and being diagnosed at a younger age, are associated with a worse AS prognosis. Now, what this doesn't mean, though, is it's definitely a gross misconception that AS does not affect women, or that women's AS symptoms are less serious than men's. So that's not the case, I did an episode on this, a while back, have a link to in the show notes about women and ASand it's very much not the case that women don't get AS or it's a much simpler or much less painful, you know, condition for them. That's not the case.
Also, AS does tend to run in families. Research shows that disease severity and functional impairment show a consistent pattern within families. In other words, having a family member with a more severe disease can indicate how others in the family with AS may be affected, and which genes are involved in AS is an ongoing area of research. At least one genetic marker, which we all know is the HLA-B27, has been associated with an increased risk of not only developing AS in the first place, but also having a worse prognosis. But again, that doesn't mean you have to have the HLA-B27 to develop AS. You don't, hip involvement is also a big and that's what got me when I was very young is my hips and when AS affects the hips or other joints, aside from those in the spine is associated with a poor prognosis. The hip is affected and about a third of AS patients. So hip involvement appears to be a risk factor. For more severe disease, including progression of the disease in the spine, AS in the hip is more common and those diagnosed at younger ages, including childhood and teenage onset. So that's what falls back in is where I'm at, I was diagnosed very young, and it affected my hips way early. So just keep that in mind as you look at your AS progression. And then non joint symptoms as well, people with AS have an increased risk of other inflammatory diseases, including psoriasis, and inflammatory bowel disease, like either Crohn's or all sorts of itis colitis. Research shows that AS patients who have such extra articular you know, non joint symptoms may have greater overall disease severity as well. So, some of the things you can do like a response to nsaids, which are non steroidal anti inflammatory drugs, you know, ibuprofen, these are considered first line medications for treating AS patients are typically started on nsaids and followed for a few months, there may be some trial and error to find the right nsaids, not responding well to nsaids can be a sign of a more severe case of AS. And these patients, you know, should go on to take a biologic medication to help reduce inflammation that you know, are taking place in their system. So is AS life threatening? Well, directly, it's not life threatening, but some complications and the comorbidities associated with AS can be. So what are some of the comorbidities? Well, two that stand out are cardiovascular disease and osteoporosis. With cardiovascular disease, people that have AS have an increased risk of cardiovascular disease, including heart attacks and stroke compared to those in the general population of the same age and sex. So this increased risk can be due to multiple different factors, including the inflammation, that is, you know, what's causing the as, and it affects the cardiovascular system as well as the joints, which could potentially increase the risk for the cardiovascular disease. So this is something to keep in mind as you work with your doctor and talk with different things that they might want to treat you for. Another one is osteoporosis is another common comorbidity for people with AS. And this can be caused either from taking steroid medications like prednisone or from having you know AS itself Well, osteoporosis itself is not life threatening. If you have a moderate or severe case of it, and you fracture a hip or spine and you go to the hospital, you can catch other things while you're in the hospital. So all of those have their own unique set of circumstances and things that you need to be familiar with. You don't have to study them in depth and be able to cite statistics and different studies; you just need to be aware of them when you're talking with your doctor.
So overall, the long-term outlook of AS is highly variable for each person. You know, the good news is that we're now on a time that there's far far more treatments for AS and any of the related comorbidities. And so well the prognosis of AS is you know, highly variable for each person. Dr. Liew goes on to say the good news is that you can do a lot to remain healthy and avoid progression of the condition. Treatment for AS aims to reduce the pain and the symptoms help maintain normal posture, reduce complications and comorbidities, prevent permanent damage and then improve your quality of life. Brett Smith, a rheumatologist with Blount Memorial Physicians Group in Tennessee says the outlook for AS is very good early in the disease course, with appropriate comprehensive treatment, including physical therapy and exercise and nsaids and biologics, many people have preserved function and minimal pain. You know, the other thing to understand is joint damage and AS cannot be undone, but treating AS can help to prevent damage from occurring in the first place. And that's key with when you're thinking about, if you're not on biologics, you say, well, I'll wait 5 years, 10 years, whatever it is down the road until I need to go on them. Once you need to go on them, it's too late, the damage is done. Biologics themselves are not a pain medication there to slow down the progression of the disease. Now, the reduction in inflammation that they can cause may reduce some of your pain, but it cannot undo any of the damage done to your joints while you waited for it to get worse. So that's very, very important to understand. And there's continued ongoing research and assessing how biologic medications, how they work, and how they stop AS progression or severely slow it down. And research is starting to show that these medications can help stop the structural damage from AS. So overall, with the help of medications, such as nsaids, TNF inhibitors, IL-17 inhibitors patient's quality of life can be drastically improved in most cases, by reducing their symptoms. And then, as xrays get better, you know, you can look at earlier and earlier diagnosis. So as awareness for AS increases overall, and patients get diagnosed and treated earlier, the prognosis for AS, you know, we hope will continue to improve.
So again, thank you, this is a little bit of a longer episode. And I really appreciate you hanging through and listening to this. For many of us that have been dealing with AS a long time, a lot of this episode may be just repeat of what we know. But I know daily, I see more and more people come on to the different Facebook forums that are brand new to it, questioning diagnosis, and how to get diagnosed. And this is just a fantastic way to get yourself basically on the right step to dealing with AS, dealing with your rheumatologist and setting up your medical team that's going to treat you going forward.
So with that, thank you so much for listening, please go to spondypodcast.com and sign up for the newsletter. Also, if you feel like it, jump out and drop a little love through the Buy Me a Coffee link. I would really appreciate it and I hope everyone listening has just a wonderful, wonderful week.
Creaky Joints article – https://www.creakyjoints.org/symptoms/ankylosing-spondylitis-prognosis/