The Progression of Non-Radiographic Axial Spondyloarthritis

Hello, and welcome to this week's episode of The Axial Spondyloarthritis Podcast. Can you believe it, this is the last episode of 2020 going to put this year to bed, and I'm sure all of us would be very, very happy knowing that no more repeats of this year come along, once in a lifetime of 2020 is enough for anybody. So before we get going with this week's episode, I hope everybody is gone to spondee podcast.com and signed up for the newsletter. Really appreciate that. But seeing the numbers go up, it's fantastic. And it's just so great to see so many people responding and liking the newsletters that get sent out, I tried to do it with some items that are stories of interest related around axial spondyloarthritis, then a couple items maybe that I found helpful, maybe a book or two. So I try to keep them really basic, maybe a little story on bandit my service dog. But those are the way I try to run it, keep it real simple. So go out, sign up for the newsletter. And then also if you're on Instagram, go to as_podcast and follow on there. And I'll follow you back. I'd like to expand the community of people I have fallen there and really interact more and more with people on Instagram.

So today's episode is a continuation of last week. Last week, as many will hopefully remember we talked about the progression of ankylosing spondylitis. This week, I want to talk about the progression of non-radiographic axial spondyloarthritis. This is one that is really a very important disease to understand. You know, it can take people on average seven years to be diagnosed with non-radiographic axial spondyloarthritis and in many cases, that's seven years too long. It is such a tricky item, like ankylosing spondylitis, non-radiographic axial spondyloarthritis is a type of chronic inflammatory arthritis that primarily affects the axial joints, you know, the spine, the chest, the hip bones, it takes so long to be diagnosed because unlike ankylosing spondylitis, there's no visible damage to these joints on the X rays, you know, hence the name non-radiographic. This differs from ankylosing spondylitis in that I said there's without having that visible damage, it can really delay a person's diagnosis, it can delay the time that it takes for them to get the proper treatment. So, like non-radiographic and ankylosing spondylitis, they fall into the umbrella term, axial spondyloarthritis, what I've named the show after. In people with AS, as I said, there's definitive structural damage of the vertebrae and the sacroiliac joints, were those of the non-radiographic just don't show that damage. And just because, you know, for many of you that have non-radiographic just because it can't be seen on the X rays, doesn't mean it's any milder, that it's any less painful. There's a doctor named Hilary Norton who's a rheumatologist in Santa Fe, New Mexico. And she has AS. She says, the burden of disease is similar and that pain, fatigue and stiffness and the impact that they have on a person's life is similar. She says, the difference really lies in whether damage incurred by the inflammation shows on X rays. Dr. Norton goes on to say early diagnosis is important, since besides minimizing symptoms, so you can maintain function, it is believed that early treatment of non-radiographic may also prevent many of the complications of this disease as well as the progression.

So is non-radiographic axial spondyloarthritis, an early stage of AS? Some say no, some say yes. Well, there is a debate about whether it is or isn't, and whether they are two separate different diseases. There is some thought that all people with AS go through a stage where x rays or their joints didn't show that definitive damage. The prevailing theory is that non-radiographic axial spondyloarthritis and AS are on the same disease spectrum as I've talked about in other episodes. However, having non-radiographic axial spondyloarthritis is not always a precursor that it evolves into Ankylosing Spondylitis. Not every patient with non-radiographic will progress to AS. Different studies have found that progression rates from non-radiographic to AS are about 5% to 30% over out to 30 years. So, you could stay having a non-radiographic for your whole life and it just doesn't progress. And I think that's what creates a lot of confusion and frustration for people. They check the boxes of I've got this, this and this. But my doctor is telling me I don't have ankylosing spondylitis because they're not seeing any type of fusion or any type of sacroitis or anything of that nature. The doctor may or may not consider non-radiographic, you as the patient have to be your best advocate. If you are checking off all these boxes of the pain, the early morning issues, all of that in the doctor saying, well, we know it's not ankylosing Sspondylitis, because we know that there's not these type of damage in the joints. And your doctor is not talking about non radiographic as then you need to ask why you need to be able to be the one that has that conversation with the doctor that says, Okay, you've ruled out AS because there's no visible joint damage. What about non-radiographic instead of some of these other conditions, you think, have them explained to you why they're ruling all of it out. As Dr. Norton goes on to say, when this disease does not progress, the disease is not staged. So there's no predictable pattern of progression in all patients. We know it's getting worse by symptoms and complications. And that's one of the things that makes this disease so hard, is that my issues with the disease are not going to be the same as yours. And with that said, it's very hard to make a baseline of we're going to see this across everybody with the disease. And without that, it's really going to come down to what you're telling your doctor. So you have to be your best advocate for yourself. And you have to also be thinking, Okay, if it's not AS don't get such myopic vision that you're so focused on AS that when the doctor tells you it's not, you forget to ask about non-radiographic, again, make them tell you why it's not either.

So some patients may develop worsening inflammatory back pain, or develop other symptoms like enthesitis, you know, the inflammation between the tendons and ligaments where they attach to the bones uveitis, which is the inflammation in the eye, or even inflammatory bowel disease. Some patients may go through periods of permission and relapse; doctors will monitor the pain, funk and functionality and daily activities, and then the presence of other symptoms. But again, you have to be your best patient advocate, you have to be the one that brings up these other issues to the doctor to understand why they're discounting some things and looking around at others. Symptoms usually occur because there's inflammation in tendons or joints, says rheumatologist Paul Beard. He's an associate professor at St. George and Sutherland Clinical School in Sydney, Australia, that inflammation can lead to an apparent worsening of symptoms. But it may not lead to permanent symptoms that occur due to damage that can be seen in the x rays or the MRIs. So again, it all boils down to knowing what you're going to be talking to the doctor about. Before you go into that doctor's appointment, write down a list of questions that way you don't feel intimidated or forgetful or any of the other things that can happen when you actually get in front of the doctor. And you know what to talk to him or her about.

So what are some of the risk factors for progression as well, some of the risk factors are a strong family history, maybe a male gender again, we know that there's not the issues of that it's a male disease. But we do see a lot more women at the studies having non-radiographic axial spondyloarthritis having all the pain, just having not as many having the actual having the joint damage. So one of the things that might mark progression is being a male, doesn't mean women can't get it again, just that's one of the things that they look at, and higher inflammatory markers. The other thing from a treatment perspective is there's no real need to differentiate between the two diseases. And this is what's really important and some insurance companies more so in the States, I think some insurance companies recognize certain drugs for the treatment of AS, but not recognize those drugs for non-radiographic and those medications primarily biologics might be very important in treating both patients should be treated the same way. In fact, according to Dr. Beard, the nomenclature is likely to change in the next few years. So that patients will be categorized as having axial spondyloarthritis without reference to non-radiographic or radiographic. And that is why I changed the name of the show that change in nomenclature to just saying everybody's got axial spondyloarthritis will make it less confusing for patients and doctors alike. And for many insurance companies, or, you know, National Medical health care plans that dole out the drugs that if it's just one disease, it makes it much easier to treat. Unfortunately, at the present, we only see this terminology used by a few and not everybody. So as more and more research is done, hopefully this will be kind of unraveled a bit and become much easier as we switch to one name for the disease. While the two conditions are similar, and cause very similar symptoms, you know, there are certainly differences between them. And these can maybe suggest the diseases have different courses as Dr. Beard. Generally the news is good for people with non-radiographic axial spondyloarthritis Dr. Beard says the course of non-radiographic patients tends to include less damage and fewer extra articular features occurring over time. Extra articular features refer to other symptoms that may develop along with the telltale symptom of back pain, such as enthesitis or uveitis or IBD.

So can treatment of non-radiographic axial spondyloarthritis prevent disease progression? Well, the short answer at this time is more research is needed. But some preliminary research suggests yes. One 2018 study that was published in the journal Annals of Rheumatic Disease found that patients with axial spondyloarthritis, the group including both AS and non-radiographic who were treated for four years with TNF blockers, had a lower spinal progression over that time. That's fantastic news doesn't mean everybody's going to respond the same way. But it does mean that there might be some ways if you have non radiographic to slow down the progression of it. But much of the available research has focused on whether treatment prevents disease progression in people with ankylosing spondylitis; more data is needed on the non-radiographic patients. So, as they look at this, need to better understand do non-radiographic axial spondyloarthritis patients respond to the same treatments in terms of symptoms management and quality of life, and whether the treatment prevents non-radiographic from progressing or causing the radiographic damage. And on top of that, even though a lot of the diseases are treated by the use of biologic medications, the treatment of biologics in non-radiographic tends to be less predictable than those of you know, that are using them that have Ankylosing Spondylitis. So for anybody listening that might not be familiar with biologics that I speak about their medications that work by modulating the immune system and reducing inflammation. One type of those is called a TNF inhibitor. And these are generally prescribed when things like non steroidal anti inflammatory drugs, which are the first line of treatment, when somebody starts talking about the pain that they're dealing with, then they they're no longer providing enough relief. There's also a disease modifying antirheumatic drugs DMARDs called Sulfazien, which may be used to lower inflammation if joints outside of the spine are also affected, you know, known as peripheral arthritis. So the FDA approved the first TNF inhibitor for non-radiographic axial spondyloarthritis, Symposia in March of 2019. So just you know, a year ago, and according to Dr. Beard 40% to 50% of patients will note improvement when taking the drug, and it appears to be most effective in patients with raised CRP and or sacroitis, that shows up on an MRI, other type of biologics that target other immune system molecules, such as IL-17 are currently FDA approved for treating AS, and may also soon be approved for treating non-radiographic axial spondyloarthritis. Now, as a side note, this article is about a year old. And some of these have been approved for non-radiographic since this article that I was reviewing was written. So whatever treatment you're prescribed, it's crucial to be compliant. The aim of the theory is to stop disease progression and hold the disease in its tracks. So the person can proceed to a normal lifestyle, says Dr. Beard. If the symptoms are under excellent control, the risk of progression is extremely low. And that's the key. Having been diagnosed back in 1984. When nothing like biologics was even conceived of, I would have loved to have had an opportunity to get on them back then, to have slowed or stop the progression of the disease and maintained a much better quality of life. So I encourage folks to really consider when your doctor talks with you about biologics, don't shut it right out. Make sure to stay open to the ideas of everything that can keep a high quality of life for you.

Then like Ankylosing Spondylitis, there are some lifestyle changes that you may incorporate to help halt or slow down the progression of non-radiographic. You know, drug therapy isn't the only way; weight control is a big factor. So you want to try to make sure you keep a healthy weight and also consider getting some exercise on a regular basis. Whether that is a Daily, once or twice a week, whatever anything to get exercise going, can do nothing but help to increase the mobility in your joints. It's really one of those things of use it or lose it. Another key item is eating right. And well, diet is controversial. That doesn't mean you have to give up everything. There are certain types of diet that show better evidence of anti-inflammatory properties. In general, it's you want to try and maintain a balanced diet. So a diet like a Mediterranean diet, also consider something like the ns n g. If you go back to episode, I think it was 3, I did the interview with Vinnie Tortarich, for the No Sugars, No Grain diet (NSNG), that's a very good one to eliminate a lot of bad items out of your food intake and hopefully feel better. Also, quit smoking, smoking is associated with higher degrees of disease activity and radiographic progression, possibly because of having an elevated CRP level. So just, you know, I know it's easier said than done. But quit smoking that can do a lot to help your body in a numerous ways. And then also track your arthritis. If you go back, there are a number of different ways that you can do that, whether it be an app from a phone, or whether it be just writing it down on paper, but track how you're doing track how you're feeling, do it on a regular basis doesn't have to be every day. But as you're starting to notice things on a weekly basis, jot them down on this day, I felt this way, this can really help you to then review those notes for the last three or six months before you go into a appointment. And explain better to your doctor, you know, for 50% of the time I was noticing this symptom or this. So it's really key to track your activity. And this can be done, like I said, in apps, or just on a paper.

With that, thank you all for listening for 2020. It's been an interesting year. And I'm so glad I was able to bring these episodes weekly to everyone. It's really been my pleasure as I get to know everyone and talk with everybody. It's just been a joy. And I can't thank you all enough for bringing so much into my life by the interactions I get from everyone. So please go out to spondee podcast calm, feel free to go in the lower corner, you can access there's a little microphone and leave me a message if you like. You can also just send me a message from the website, connect with me on Facebook or Instagram. And I'll answer to you. And again, I look forward to having a great rest of this year for the next few days. And then let's take 2021 and just have a great time with it and do everything we couldn't do in 2020. So thank you and have a wonderful day.

Creaky Joints article – https://www.creakyjoints.org/symptoms/non-radiographic-axial-spondyloarthritis-progression/