Progression of Nr-axSpA to Ankylosing Spondyloarthritis

Transcript: Sergio Schwartzman, MD: Philip, an area that I think is still a huge unmet need, despite the registries that now exist predominantly in Europe, has been the area of predicting patients who will progress from nonradiographic to radiographic axial spondyloarthritis. Can you comment on that, please?

Philip J. Mease, MD: Yes, I think one of the important things with points made earlier is that not all patients who present with nonradiographic axial spondyloarthritis will progress to the radiographic form. One very good study, an older one that was done in Germany, tracked patients over time. GESPIC cohort found that at the 10-year mark 12% of patients had no changes suggestive of radiographic disease.

Although there was a conversion of many patients along the way, and you could ultimately see radiographic damage in the form of new bone formation, there were many patients who didn’t have that occur. I think that’s a key point we need to get across here because there is this misconception that eventually all patients will have evidence of radiographic changes. Some of the markers that are associated with the progression are ones you can guess from our previous discussions. Being male and being HLA-B27 [human leukocyte antigen B27] positive are examples of that.

For female patients who are not HLA-B27 positive, they are a little bit more protected in terms of developing the aggressive syndesmophyte formation, the bridging calcification between vertebral bodies that causes the ankylosis phenomenon. But I think it’s important to note that even though these changes may not be occurring in some patients, like Tiffany, the disease burden is the same, the amount of pain, the amount of fatigue, and the amount of disability from physical dysfunction is in all the ways that we measure those things equivalent. It should not be seen as a lesser phenomenon not to have radiographic changes. The way that Tiffany described the difficulty that she had getting out of bed when things really got bad was eloquent in helping us understand that.

Sergio Schwartzman, MD: As we close out the diagnosis section of the discussion today, before we embark on management of these patients, I have 1 other question for Tiffany. That is, how important has it been for you to have a definitive diagnosis? I’m going to couch that a little bit by telling you that rheumatology is still not an exact science and, not infrequently, many of us do use terms such as overlap autoimmune disease or undifferentiated, a term that Atul used previously.

We are frustrated. Some of that is a consequence of our individual ignorance about some diseases. But some of that is just that rheumatology is not yet at a level where we can make a definitive diagnosis for everyone. Sometimes, what I will say in the clinic is that this is probably a disease in evolution. It is less important what we call it and more important how successful we are in terms of treating it.

With that as a background, what I’m going to ask you is, how important was it for you to get a diagnosis definitively established at some point where you actually gave a name to this?

Tiffany Westrich-Robertson: We talked about the social aspect and the professional aspect. I think it really centers around the psychological aspect. Being told you are a mystery is not something that is easy. We all have roles. For example, we all identify with a role along the lines of, “I am a teacher. I am a lawyer.” You’re something. You have a role. So, it’s very similar. You don’t know what you have, and it dominates every aspect of your life. It’s psychological, I think, more than anything.

As far as undifferentiated disease, just speaking on behalf of myself and others, it is also something in the rheumatology world where patients will come to us and say, “I have undifferentiated polyarthritis.” There are different terms within the undifferentiated umbrella, as well. I just think for patients, that word, undifferentiated, makes them feel not validated. At our nonprofit, we actually cover undifferentiated as one of our key primary diseases because there are so many patients who don’t feel like they have a home.

They will come to us and say, “I don’t know what I have. I don’t know who I’m supposed to follow for a nonprofit because I have no name.” So that’s what it is, I think, in a lot of it. Of course, the disease progression as well and knowing what your journey could be, but it’s a psychological identity situation.

Sergio Schwartzman, MD: Thank you.

Transcript Edited for Clarity