The Challenge of Non-Radiographic Axial Spondyloarthritis
Jamie Bussin and Dr. Élie Karam
Non-Radiographic Axial Spondyloarthritis (Non-Radiographic AS) is a chronic, progressive, painful form of inflammatory arthritis. It may be that you or someone you love is impacted by it, but they haven’t actually been diagnosed, which is one of the biggest challenges facing patients today. It can take years to properly diagnose this painful, progressive, inflammatory rheumatic disease. On Episode 284 of The Tonic Talk Show I spoke with Dr. Élie Karam, who not only treats, but suffers with this condition. This is a digest of that discussion.
Non-Radiographic AS is a form of arthritis, an inflammatory disease, that does not appear on regular x-rays. It affects approximately 1% of the Canadian population, with an average age of 30 at the time of diagnosis. It affects men and women roughly equally, and can impact any joint in waves -meaning some days patients won’t feel any pain and on others they may feel intense pain.
Dr. Karam was doing his residency for orthopedic surgery when he first experienced the pain. “I was playing squash, reaching to hit the ball, when I slipped and fell on my back. I thought the pain I experienced was just a sprain that would go away. But it didn’t. It took me more than three months to get through that first flair of pain.” Says Dr. Karam
Despite being surrounded by experts in the field, it took more than two years to reach the correct diagnosis. “My inflammatory markers were negative. The x-ray was negative. Which is rare for a disease. It was my wife, a family medicine resident at the time, who first realized that it might be Non-Radiographic AS. I got the right test (an MRI) on the sacroiliac joint.” Dr Karam explains, rapid access to MRI tests for proper diagnosis for Non-Radiographic AS patients.
It was this experience that spurred Dr. Karam to join The Canadian Spondylitis Association, first as a board member, then as the Chair. His hope was to decrease the delay in diagnosis for those with the disease, and to improve access to proper treatments. Dr. Karam didn’t respond to six months of anti-inflammatory treatment. The ‘game changer’ for him was a biologic agent, through which he got most of his quality of life back. He still experiences some pain, but avoids the risk of a rigid or fixed spine.
Dr. Karam is particularly excited about a new therapy that was approved for use by those who have Non-Radiographic AS by Health Canada earlier this year – RINVOQ. It can be taken orally (whereas other treatments are injected). However, continued research is required as within 5 years 50% of Non-Radiographic AS patients become resistant to their current biologic treatments.
Dr Karam’s best advice: Consider whether your pain is acute (which tends to get worse with more movement/exercise) as opposed to inflammatory (which tends to get worse with more rest). If you think you have inflammatory pain lasting more than three months, speak to your primary care provider to get tested.
Dr. Élie Karam is physician, Chair of the Canadian Spondylitis Association and a patient living with Non-Radiographic AS. For more information visit www.sparthritis.ca
