Understanding Non-Radiographic Axial Spondyloarthritis - Episode 9

Patient Perspective: Signs and Symptoms of Nr-axSpA

Transcript: Sergio Schwartzman, MD: The next question, and I'll take that on, is what are the signs and symptoms of nonradiographic axial spondyloarthritis? In terms of the spinal pain, generally this occurs before the age of 40 or 45. It typically is gradual in the onset of disease, as opposed to having a precipitant, or at times a precipitant can then trigger the disease process. The pain can be worse at night.

It improves with exercise and generally is associated with morning stiffness that's dramatic. Generally, that's estimated to be greater than 30 minutes in the morning when patients wake up. Those are issues referable to inflammatory back pain, which is probably one of the most important red flags for this condition, though not all patients who have inflammatory back pain have axial spondyloarthritis. In terms of the signs and symptoms, the spine is central, and I would include the entire spine because women in particular have more cervical spine disease associated with this disease than men do.

Regarding the other elements we've touched on, the comorbidities and comanifestations were very well summarized by Philip. The peripheral musculoskeletal manifestations were mentioned by Atul. These include enthesitis, arthritis, and what’s important is patients can also have dactylitis in the spectrum. With that, I'm going to move to the next question. I’d like to ask you, Tiffany, tell us a little bit about your patient journey from the time that this started for you. What has happened? Give us your frustrations and successes.

Tiffany Westrich-Robertson: That's a loaded question. As you had mentioned with onset of age, I was 37 when I had onset of disease. At the time, I was actually an athlete. I would say that I was in excellent shape, ate really healthy and had low inflammation in the body. So it came as a real surprise to me how suddenly I was unable to do many things. It started with extreme fatigue paired with a low-grade fever and chest pain, which was diagnosed as costochondritis. That went on for a couple of months. The next thing that happened is I woke up and I couldn’t stand on 1 foot.

Everything that happened was asymmetrical, all on my left. It was left foot, then left fingers, and it was smaller joints near the fingernails and wrist. It just kept going down the left side. Interestingly, for the tailbone area, my lower back, it started probably about 8 months into this, so it was not one of the first signs. However, I did have the heel pain in my foot. At the time, I was referred to a rheumatologist about a year in. It took a while. They first focused on lung issues and heart issues because of the pain in my chest.

Everyone dismissed the fatigue and the low-grade fevers. It seemed that that was not associated or considered to be relevant to what I was experiencing at the time. When I did get sent to the first rheumatologist, they did the blood work. I had wonderful laboratory test results, they would all say, and ”Everything looks wonderful.” I did not have high inflammatory markers. I was HLA-B27 [human leukocyte antigen B27] negative and at the time—this was around 2007, 2008—I was told it couldn’t be ankylosing spondylitis because I’m female.

So that went completely off the table. I was given undifferentiated connective tissue disease as my diagnosis, and I was told, “We're just going to have to wait and watch you get worse so that we can figure out what this is.” I remember leaving the doctor's office and crying because it was that moment where I said, “This is going to get worse?”

They said, “We're going to watch you get worse.” That happened. I started getting to the point where I did mirror some to the other side. At the time, the doctors took a lot of x-rays and came back and said again, “We don't see anything on the x-rays. Your blood work looks fine. I cannot diagnose you with anything, nor can I give you any treatment.” It got to the point where now we're about a year and a half in and the fatigue was so bad, I was sleeping about 16 hours a day.

I was running a low-grade fever continuously for about 4 1/2 weeks. I was in so much pain, I added it up and it was in about 22 locations in my body. I wasn't able to sit to drive because my lower back hurt so bad. My neck was extremely affected as well. Then I woke one morning with extreme pain that I thought was in my ear. I went to the primary care doctor, who was so frustrated by this time. He knew I was suffering, and nobody could figure out what this was. He touched my jaw and my ear, and he said, "You don't have an ear infection. This is your jaw joint that I'm pressing on." He ended up calling another rheumatologist, put me in on an emergency basis, who I literally saw within a few days—we know that's amazingly quick. He diagnosed me with rheumatoid arthritis because there really was nothing else at the time clinically that they could justify. That was how I received a rheumatic diagnosis.

Transcript Edited for Clarity