Patient Diagnosis of Nr-axSpA

Transcript: Sergio Schwartzman, MD: How did a diagnosis ultimately get established?

Tiffany Westrich-Robertson: At the time, the health insurance situation in the United States was quite different. With pre-existing conditions, you could not get better insurance, so I fell in that loophole. I had a decision to make. I could either get rid of my insurance so that I could be covered to progress to a biologic, or I could try clinical trials. I did go into clinical trials, and that helped me get on the first biologic. It seemed to make me better.

But the underlying activity was never to the point where I felt I had a great quality of life. It was a biologic that was indicated for rheumatoid arthritis. It was not indicated for the spondyloarthritis diseases. What ended up happening was being on that for about a year and a half, I started feeling like my back, my neck, and my lower back in particular were so stiff when I would sleep at night, I actually thought there was something wrong with my bed.

Clearly, I needed a new mattress. We hear that a lot with people living with these diseases. We tend to blame it on how I have an uncomfortable chair or it's time for a new mattress. That was my first indicator that something wasn't right. I also noticed when I was walking, I would literally get stuck. I would start to walk, and it was almost a locking type of feeling where if I took another step, there was going to be excruciating pain in my lower back.

I put a brace on, thinking I was having back pain, which made it 10 times worse, to the point where I was in tears. This was about a 3-month course, I would say. I also had moved, so I changed rheumatologists. I'd moved states and went to the new rheumatologist and explained everything that was happening. They said it's still rheumatoid arthritis and left me on the same medication. About a month more went by, and it was the worst pain I've ever experienced in my life.

I would lay in bed, and when you said it can take 30 minutes to get up, that might be now, when I'm on treatment. But at this time, it was well over an hour. I could not move. I would wake up, and the best way I can explain it is that my spine felt like glass. If I would even try to move a half inch, it would shatter. It was that rigid. Eventually, to get out of bed, I would have to roll out of bed on my knees onto the floor until I could eventually stand up. Even when I did stand up, I had to hunch my pelvis forward to give some relief because I could not stand straight up, and I would have to walk on my tippy toes.

That's how I had to walk around for at least an hour. I went back to the rheumatologist, and I explained that something is extremely wrong here. They did all the tests again. The blood work looked good. Even though I was in so much pain, my inflammatory markers were quite low and there was no radiographic evidence of anything. At the time, the doctor had just gotten back from UR [a United Rheumatology meeting]. He came in and he said, "You are a classic case of nonradiographic axial spondyloarthritis." Mind you, I have never been a classic case of anything. I'd always been the mystery patient.

He said, "I'm going to re-diagnose you." This was 2013, so that was 6 years from onset. He put me on a different biologic indicated for spondyloarthritis, and within 3 weeks, my disease was under control. It only took the first dosing and then another dose after that.

Sergio Schwartzman, MD: To Atul's study point, it's interesting that somebody thought about axial spondyloarthritis in you when they did an HLA-B27 [human leukocyte antigen B27] test very early on, right?

Tiffany Westrich-Robertson: Yes, very early, within the first year it was done.

Sergio Schwartzman, MD: Did you ever have an MRI of your sacroiliac joints?

Tiffany Westrich-Robertson: I did finally. But that first doctor diagnosed me just off of clinical signs. Then I moved again—I did a lot of moving—and came back to my hometown. The original rheumatologist I saw did not do an MRI. But based on my laboratory test results, the rheumatologist said, “There's nothing wrong with you” and refused my medication. I ended up flaring again and got a new doctor. He took MRIs and found some inflammation. Now on my chart it is nonradiographic axial spondyloarthritis. In essence, I did get the first diagnosis. Then in 2013, it was taken away and then given back to me.

Sergio Schwartzman, MD: It's interesting. We were talking about the signs and symptoms, and Atul will talk a little bit about the work-up next. But I think we missed 2 important ones just listening to you, but something that we see in the office every day, and that is fatigue and frustration. Those are an unbelievably important set of symptoms.

Transcript Edited for Clarity