Understanding Axial Spondyloarthritis - Episode 15
Tiffany Westrich-Robertson: Once the rheumatologist diagnosed me, I was on a biologic that was indicated only for rheumatoid arthritis. And he said, “I think you need to try Cimzia, which he knew was in clinical trial phases for non-radiographic axial spondyloarthritis. And he said, “It’s already indicated for ankylosis spondylitis, so that will help you, probably. We’ll see. If it does, then we know we’re on to something.”
So he switched my medication, and remember, when I was on the other biologic and getting this diagnosis, that was the time I had to walk with my pelvis tilted forward. It was so bad. I couldn’t get out of bed. I felt like my spine was glass. It took about 4 weeks, and I was back to walking normally. I still have those bouts when I do need to watch it, when I do need to sit. But I have not had the experience of my spine feeling as if it’s going to shatter. I haven’t had the experience of walking on my tippy-toes with my pelvis forward because I can’t straighten my back. So those things have gone away since I’ve been on this treatment. So that has been extremely positive.
As far as the challenges, if there were such a thing—a non-radiographic axial spondyloarthritis back in 2007, 2009—I’m sure that I could have been diagnosed a lot earlier, because, 1 thing that nobody has ever said to me prior to that rheumatologist’s free diagnosis of me was the word textbook. I’ve always been the mystery patient, atypical; textbook was not something that I had ever heard until then. He said, “This is textbook non-radiographic.” And I thought, Wow, I’m textbook, I’m something, I am a category now.
But I do question, back in 2007 to 2009, well really 2010, the American College of Rheumatology had upgraded the diagnostic criteria for rheumatoid arthritis. And my original rheumatologist was aware of these. I think he may even have been on the committee for them, because he mentioned it when he diagnosed me in 2009, that I will qualify for rheumatoid arthritis based on the new criteria.
It makes me wonder how many zero-negative rheumatoid patients are out there are like me. That’s the first issue that I’ve experienced and the reason why I think it needs to be more well balanced.
The second thing that’s really an issue, and I feel very fortunate, but my rheumatologist knows that I cannot be prescribed. My rheumatologist knows that you cannot put down the non-radiographic axial spondyloarthritis on a diagnosis and have insurance cover it. He tried, and they came back and they denied the medication. So he changed my diagnosis back, only for paper purposes, to rheumatoid arthritis, so that I could get the treatment I needed, and that being Cimzia, and the treatment is indicated for RA [rheumatoid arthritis] and axial spondylitis.
So I feel very fortunate that my doctor knows to do that. Now I’m not saying that any rheumatologist wouldn’t know to do that. But if they don’t know that they have non-radiographic axial spondylitis, then maybe they’re going to get a medication as I did in the beginning that was only indicated for RA, and it could delay. The awareness of this disease and the need to have the proper diagnosis for it—there’s just such a need.