Scott Webb (Host): Many of us suffer from back pain and resting our backs usually helps, but if your back pain gets better when you're more active, you might be suffering from spondylitis. My guest is here today to tell us more about spondylitis, how it affects our backs and bodies in general, and how she can help. I'm joined again today by Dr. Marcia Johnson. She's a board-certified rheumatologist practicing at Franciscan Health.

 This is the Franciscan Health Doc Pod. I'm Scott Webb. Dr. Johnson, it's great to have you back on the podcast. Last time, we talked about lupus and heart disease and a bunch of great information for patients and families. Today, we're talking spondylitis and I don't know a lot about spondylitis, so let's start there. What is spondylitis? Are there different types maybe that affect the spine?

Dr. Marcia Johnson: Spondylitis, as the name implies, means inflammation of the spine, and it's different than regular degenerative joint disease in your spine or degenerative arthritis, or degenerative disc disease, which is of course super common.

And one reason I'm always sort of passionate about this is diagnosis is so delayed. The average patient with, say, ankylosing spondylitis, it takes them six to eight years to get diagnosed. So for that period of time, they're not doing well, they're in pain. So in the spondylitis family, you're right, there is ankylosing spondylitis, which many people have heard of now, and I think some people somewhat prominent have, you know, made their diagnosis public, which has helped. I think like the lead singer from Imagine Dragons for example, has done some publicity, which is great. It used to be felt that it was more in men than women, like 3:1 ratio. And now, recently, I think it's more one-to-one. And I wonder if maybe it's just being recognized better.

So, ankylosing spondylitis is part of the spondylitis family. But in there also is the arthritis you can get when you have psoriatic arthritis can affect the spine. You can get a spondylitis with that. People who have inflammatory bowel disease, Crohn's or ulcerative colitis can get spondylitis symptoms with that related to the disease actually. There's a condition called uveitis where you have eye inflammation, which is also associated with spondylitis.

So, there are other conditions one can have with it. There's also what's called reactive arthritis after an infection, where that's also in the spondylitis family. By infection, I mean like, salmonella infection, a gut infection or some STIs, sexually transmitted infections. can have a spondylitis associated with that. And it does definitely behave differently than degenerative arthritis of the spine.

Host: Yeah. And something caught my attention there. You were talking about delay in diagnosis. And it makes me wonder because I suffer from back pain and I assume it's just regular old back pain, maybe arthritis, whatever it might be. Yeah, like how do we differentiate between regular "back pain" and pain that might be related to spondylitis?

Dr. Marcia Johnson: No, that's an excellent point because so many people do have back pain, but it behaves differently. So typically, the pattern of pain is different. People with spondylitis usually find that they are really stiff in the morning, not for five or 10 minutes, sometimes hours, and their back pain improves if they're active. Also, with it, you may go to sleep feeling fine, but the second half of the night you wake up and you have bad back pain, which is improved by moving. So often people with degenerative arthritis in their spine find that, "No, I need to rest my back." With spondylitis, you don't want to stand in line because you're not moving. If you take any car ride, getting out, your back is so stiff, but then you're better with activity.

So, like any inflammatory arthritis, activity actually improves the symptoms. Whereas degenerative arthritis, it makes them worse. Also, the location. I mean, usually, it is lower back, so is degenerative arthritis, but often off to the sides of the back and what are called the sacroiliac joints where the spine and pelvis kind of come together. You can have pain and inflammation there. And also with it, you have other stuff too. You can have peripheral joint pain with swelling. You can have what's called enthesitis, which means tendon inflammation. And a common type of that is achilles tendon pain in the back of your heel; what's called plantar fasciitis on the underside of your heel, you may have tennis elbow, which is also tendon inflammation. With it also, you can have peripheral joint-wise, what's called dactylitis, where you get a whole like toe or finger swollen. It's called sausage toe or sausage finger. I used to have a patient tell me, "I've been to Bob Evans again" because her fingers swell up related to that.

It is also, by the way, fairly hereditary. So, you know, I'd say, "Oh yeah, my uncle had that." And in the old days, before it was better recognized or treated, people with end up with what's called a bamboo spine, which what bamboo looks like. And they'd come and they were all bent over. They couldn't look up to save themselves. They were saying, "Oh, that never happens anymore." Actually, about a year ago I saw a young man, I mean young, and he had it for several years and kind of neglected it and already he couldn't look up. His spine was partly fused. It affected one hand where he couldn't use one hand. Well, he hadn't been treated yet though, and he basically was almost wheelchair bound when he shouldn't have been, but he was.

Host: Yeah. So, you see the importance of diagnosis and treatment, and that's what I wanted to talk about next was how do you diagnose spondylitis? What are some of the tests and what might be maybe challenging to diagnose? Like, is it challenging to diagnose?

Dr. Marcia Johnson: It can be because sometimes people have some other things. But not all of the things, you know, like do they have it or don't they? So, there is a blood marker called HLAB-27, which is seen in most, but not all patients with spondylitis. So, you look for that. And if you see it, it's seen though in like 8% of the population. And most people who have it don't have spondylitis. So, it's useful, but certainly not totally diagnostic.

So, you look at the symptoms, you check the blood test, you can check inflammatory markers, which are usually but not always elevated with spondylitis. What's called a sedimentation rate and C-reactive protein. Those should be, but not always, but they should be elevated. And you could also do imaging in the spine. And one common spot to check is to image the sacroiliac joints, which again is like where spine and pelvis go together. You can check x-rays and the x-rays may show evidence for inflammation, increased bone growth there, a pattern that is consistent with spondylitis. But not early on, they often won't. And then, if they don't show anything and you're still suspicious, you can perform an MRI scan of the lower spine and look for changes of inflammation there. So, you can see if there's evidence for that.

So, family history can help because it is more common in families. The blood test can help but not perfect. The symptoms definitely can help, and imaging can help. So, it's sort of a combination of everything and you're saying, "Well, gee, what if someone has some of these, all these and they're miserable, what do you do?" If one has spondylitis, anti-inflammatory medicine should help to a point. So, that's another thing that's useful to get diagnostic criteria actually for that. So, you know, you have them try anti-inflammatories such as Ibuprofen is one; naproxen, which is Aleve is another. But there are about almost 30 on the market. So, some people do well with one but not another. So, you might try a couple to see if it does anything, because that's the first line treatment anyway.

Host: Yeah, it's interesting. And when we talked about lupus, you said it's more women than men and spondylitis, more men than women. And just want to get a sense from you, like, you know, who typically is diagnosed with this? Men, women, age groups, demographics, that kind of thing.

Dr. Marcia Johnson: Yeah, good point. Well, now I think spondylitis might be more equally women and men. In fact, another study I read recently showed that they felt women were a little more than men. So, there is that, and to be diagnosed by the formal criteria, your back pain have to have started before age 45. But certainly, teenagers can get this. I mean, when teenagers have spondylitis, they call it often juvenile idiopathic arthritis, which is like a catchall for rheumatoid psoriatic or this among other things. So, often, it's a young person, you know, someone who's like 30 years old who has it. It's like, "My back is stiff for two hours in the morning. What is causing this?" That's not normal at all. Some people think it is.

And one of the tricky things is often this doesn't start overnight, it creeps up on you. It's insidious. Other things, you know, maybe pretty abrupt, like lupus I've seen, and certainly rheumatoid can be very abrupt sometimes, but this is more it kind of creeps in, so maybe people get used to a certain level like, "Oh yeah, I'm always stiff in the morning for an hour." Well, you're 30 years old, you shouldn't be. So, it's a matter of putting symptoms together with supporting blood tests. And it is seen often in younger people. It can be.

Host: Let's talk treatment options for spondylitis. You mentioned anti-inflammatories is maybe the first line frontline treatment there, although there's a lot to try and we would assume most folks aren't going to try all 30 of them.

Dr. Marcia Johnson: No, no.

Host: But physical therapy, lifestyle changes, things like that.

Dr. Marcia Johnson: Oh yeah, physical therapy can be very beneficial for this. And, you know, I often encourage people at least to see a physical therapist once to get at least instruction on a home exercise program. They've shown things like yoga can be beneficial, you know, stretching, of course, anything aquatic is good. So, exercise I think is very important for this type of arthritis. It is for all of them, but this one certainly.

So interestingly, insurance companies, which often don't cover things easily, they will approve using a biologic medication if you have failed two anti-inflammatories for spondylitis. And what that tells you is, you know, there's nothing that's good except these pricier drugs after you try to anti-inflammatories. So, the first line of treatment are drugs that block tumor necrosis factor, usually first line of treatment such as Humira or adalimumab, which most people have heard of. There's a number of drugs in that family, so one could try. And they're, I think, relatively safe drugs in the grand scheme of things.

Adalimumab came out in 2003. It has no effect on kidney or liver. They're injectable or there's a couple that are infusible in that family. So if drugs that block tumor necrosis factor don't work well, another option would be drugs that block what's called interleukin-17. And in that family you have Cosentyx, also called secukinumab. You have Taltz, which has even a longer name, which I won't tell you.

And then, sort of recently you have the Rinvoq, which people generally heard of, I think, upadacitinib, horrible name there. Xeljanz, which I think people have heard of because I think they do commercial still, tofacitinib, those are pills. They're called Janus kinase inhibitors and they can be useful. And then, they have other drugs that block different parts, different pathways. So, you then can go to the biologics basically, if one needs to. Some people just need an anti-inflammatory medicine.

Host: Right. It sounds like a range, right? Depending on when they're diagnosed and how bad the symptoms are. I'm always hopeful or I look for it when I host these, Doctor, for Franciscan Health is just reason for optimism. It sounds like there is reason for optimism if folks are diagnosed as early as possible, treat it as early as possible. It sounds like folks can live pretty well.

Dr. Marcia Johnson: Absolutely. Oh yeah, that's what I've certainly seen. For example, years ago, I saw a younger woman in her 20s who was sent to me for fibromyalgia. Well, it turned out she also had hours of back stiffness, pain, sacroiliac joints, HLAB-27 positive, and on Humira 80% better. So, it wasn't just fibromyalgia, I mean, huge improvement in symptoms. So absolutely, you can really improve people's quality of life. In theory, there's some debates though these drugs may stop joint damage or spine damage. So, you could do a lot for people compared to what we used to do.

Host: Yeah, definitely. I just want to finish up today. If folks are experiencing chronic back pain and they, after hearing this, perhaps are concerned that it might be spondylitis, what are your recommendations?

Dr. Marcia Johnson: Ideally, to see a rheumatologist or their primary care doctor could do the screening labs and x-rays. And then, possibly see a rheumatologist. You know, if they're like older and they've injured their back, they're in a bad car accident and they hurt all the time, and spondylitis, usually the pattern is you do get better with activity. But if they're like 35 years old, they've had back pain for five years, they're stiff in the morning, I think it merits checking out.

I have certainly had patients who had spondylitis who did not have the HLAB-27 marker, didn't necessarily have inflammatory markers were elevated, only had some minor changes, and sometimes if they tried anti-inflammatories and their symptoms fit, you might still think about trying a drug like Humira or Remicade or Enbrel just to see if it helps, because those are relatively safe drugs and often people are pretty miserable with this. I mean, it really can impact quality of life. And I think it's way underdiagnosed. I mean, the average person takes six years. That's not great.

Host: No. Yeah, as you're saying, you know, there's some famous folks with ankylosing spondylitis, and so it's in the news, social media, we see the commercials. But the reality is it is a bit underdiagnosed, maybe more than a bit. And there may be some trial and error because, as you say, some folks might have some of the symptoms, but not all. So, let's try this, let's try that. And all that seems to me anyway, as a lay person here, best in the hands of someone like yourself, you know, a rheumatologist who does this for a living.

Dr. Marcia Johnson: No, it's nice of you to say that. And you're right. I mean, no drug is guaranteed to work for anybody, and there is some element of trial and error. I mean, they're working on trying to find ways to define better which meds work for which people. But I always tell patients medicine is not an exact science.

Host: No.

Dr. Marcia Johnson: Trying to be though.

Scott Webb: Yeah, it's an amazing science, but it's not an exact science. And, you know, with all the innovations and changes and developments, I'm sure we'll have you back on again, whether it's to talk about lupus or spondylitis or something else that you treat. So, thanks for your time. Appreciate it.

Dr. Marcia Johnson: Oh, you're welcome. Thank you.

Host: And for more information, visit franciscan health.org and search Rheumatology. and if you found this podcast helpful, please share it on your social channels, and be sure to check out the full podcast library for additional topics of interest. This is the Franciscan Health Doc Pod. I'm Scott Webb. Stay well, and we'll talk again next time.