Ineffective NrAxSpa Treatments

Tiffany Westrich-Robertson: In 2010, they put me on my first biologic. And it was indicated only to treat rheumatoid arthritis. I did okay on it, but my rheumatologist was not happy because I still had a lot of pain. And I kept complaining about my tailbone area. So he said, “I need to test you for ankylosing spondylitis,” and they did the blood test. I came back HLAB27 with gene negative. No imaging. I had no history in my family so they said, “You don’t meet the criteria for this.”

I stayed on the biologic. I moved to a different state, and I saw a different rheumatologist. At that time, I ended up really hitting hard with the tailbone area. I was not able to get out of bed in the morning. It felt like my spine was glass and if I even moved a half of an inch, it was going to shatter. I’d experienced the stiffness before, of the arthritis, never to this degree. It took an hour to even be able to get out of bed. And then when I did I remember having to walk my dog and being fearful because I didn’t know how to get outside and back inside. I thought I was going to get stuck outside. I would have to walk on my tippy toes, with my pelvis tilted forward, to even move.

At that time, I called the rheumatologist. I said, “Something’s really wrong here.” And I went back in and I said, “I know I’ve been tested for ankylosing spondylitis and it came back negative, but I don’t know what this is.” And at the time they took all of these tests again; they did the same thing. And then I met with a, a physician’s assistant with the results, and she said, “Well, your labs are fine, your graphics are, everything’s fine. It must be seronegative rheumatoid arthritis.” And I refused to leave the office. I said, “It’s not.” And she got really caught off guard, and I said, “Somebody needs to explain to me why I can’t walk. Somebody needs to explain to me why I stand at the grocery store and I have to leave the line because I can’t stand it. I’m almost in tears. Somebody needs to explain to me why I can’t cook any more without a bar stool.” So she said, “Let me get the doctor.”

And he comes in and he assesses it, and it was like, to me, a miracle. He looks at me and he said, ”I think you have nonradiographic axial spondyloarthritis [NrAxSpa].” I said, “What’s that?” And as somebody who had been in the community, I had heard about it a little bit, but this was in 2013 and it had just started coming to the United Sates. He had just got back from EULAR [European League Against Rheumatism congress], and he said that it was something that they were talking about a lot there.

“Axial spondyloarthritis” now is the umbrella term for the inflammatory arthritis conditions of the spine. And if the ankylosing spondylitis typically has positive radiographic evidence, and nonradiographic, you can still have the exact same symptoms.

So nonradiographic, you can have the same symptoms, very symptomatic of ankylosing spondylitis; however, you don’t show up on the radiographic, which makes sense. And I said, “That sounds right.” So my diagnosis was officially changed as of 2013. So it took from 2007 to 2013, but there was no such thing as nonradiographic axial at the time of my original diagnosis. And so it took that long to get.

But I was lucky because 2013 is when that diagnosis or when that disease category really presented itself in the United States. So I feel fortunate that I was one of those. So it took me that long, though, to get to that right diagnosis.