Do I Need a Specialist for My Ankylosing Spondylitis?by Charis Hill Patient Expert
Many people have never heard of spondyloarthritis, a class of diseases that includes ankylosing spondylitis (AS), an immune-mediated inflammatory rheumatic disease of unknown origin that impacts people of all ages and backgrounds. Even though spondyloarthritis affects about 1 in 100 Americans, many doctors are unfamiliar with the disease, making it important to know how to advocate for yourself to get a diagnosis and the right treatment. Here’s more on how and why you’ll need a specialist for your AS.
What Is Ankylosing Spondylitis?
Ankylo-what? Ankylosing spondylitis is a systemic chronic disease that causes pain and inflammation primarily in the spine and sacroiliac joints. Commonly diagnosed between the ages of 17 and 45, AS often causes low back pain and stiffness that lasts longer than three months; the pain gets better with activity and worse with rest. In severe cases, bone spurs can fuse the spine into an inflexible column of bone. AS can also affect organs, such as the eyes, heart, and lungs. While AS is currently incurable, treatments are available to slow its progression and to manage symptoms.
How Is My AS Diagnosed?
There is no one single test that can diagnose AS, which makes it necessary for a doctor with specific training, like a rheumatologist, to make a definitive diagnosis. Elin Aslanyan, director of programs for the Spondylitis Association of America (SAA) says a rheumatologist will conduct a thorough physical exam, order imaging tests, review your individual and family medical history (especially any history of AS), and order blood work (including a test for HLA-B27 – a gene commonly associated with AS). Common signs of AS are inflammation in bloodwork, sacroiliitis, lower back pain and/or fusing, and loss of mobility, but a diagnosis generally involves a mix of several symptoms and positive test results.
What Can I Expect From Treatment?
AS is a complex lifelong disease. Although there is no cure, treatments can reduce inflammation, control pain, manage fatigue, and treat complications that arise such as uveitis (inflammation of the eyes) or gastrointestinal distress. Long term, rheumatologists monitor the disease and make adjustments to treatments as needed to manage flares or changes in symptoms and disease activity. AS impacts everyone differently, so there is no one-size-fits-all treatment regimen or prognosis, and it can take time to find the right combination of treatments for each person to slow down or stop the disease.
How Will My Rheumatologist Decide How to Treat My AS?
A rheumatologist may order X-ray or magnetic resonance (MRI) images to look for damage to joints, review bloodwork to monitor inflammation, and assess symptoms and mobility. These help determine what treatments may help, including nonsteroidal anti-inflammatory drugs (NSAIDs), exercise, physical therapy, disease modifying anti-rheumatic drugs (DMARDs) to reduce inflammation, biologic drugs to target the cause of inflammation, steroids for inflammation, and more.
What Does Successful Treatment Look Like?
While there is not yet a cure for AS, it is possible to slow down or even stop the disease’s progression. It is also important to remember there is no one-size-fits-all treatment for AS. A collaboration of medical professionals who treat and research AS say: “The goals of treatment of AS and non-radiographic axial SpA (spondyloarthritis) are to reduce symptoms, maintain spinal flexibility and normal posture, reduce functional limitations, maintain work ability, and decrease disease complications.” Rheumatologists seek to achieve as many of these goals possible, but it is important to consider that people living with the disease can have an big impact on their own outcomes by being proactive.
How Do I Make Sure My Rheumatologist Listens to Me?
Planning questions for appointments, being up front about symptoms, taking medications as directed, and understanding how the disease works will all help when discussing your care. You may consider approaching your appointments like conference meetings with a peer. Richard Howard, chief mission advancement officer for the SAA — who also lives with AS — says: “New information about the disease comes out on a regular basis; I value discussing how the information applies to me with my healthcare provider. Most importantly, although I might feel fine now, this is a lifelong disease, so the relationship with my healthcare provider is very important.”
Can I Just Ask My Primary Care Doctor to Help When Symptoms Flare?
AS can cause damage before it is felt, but a specialist who knows the disease can sort out what your symptoms mean, where a primary care doctor may be ill-equipped to do so. Howard from SAA says: “I’m not able to tell how active the disease is. Sure, I’m aware of upticks in obvious symptoms such as pain, uveitis (eye inflammation), gastrointestinal bleeding, etc. I’ve felt relatively great and yet my C-reactive protein (CRP) rate was still high, or I’ve made functional adaptions and didn’t notice a decreased range of motion.”
Can I Manage AS on My Own?
Not likely. AS is a complex disease that benefits from regular monitoring by trained specialists. Rheumatologists regularly test for unseen inflammation, damage, and disease activity; as well as prescribe medications to slow disease progression. While treatment guidelines conditionally recommend complementary treatments like diet and exercise, it is important to know that, while they may help relieve symptoms, research has not shown them to effectively slow the progression of the disease on their own.
Are There Other Specialists Who Can Help?
Living with a chronic illness like AS can affect many aspects of overall health, including mental wellbeing, diet, and other parts of your body. Aslanyan from SAA lists the following specialists that can also assist in managing AS: pain management specialists, mental health professionals, physical therapists, and registered dieticians. Researchers Kyle J. Wenker and Jessilin M. Quint, O.D. write that still other specialists — dermatologists, gastroenterologists, and opthamologists — can treat aspects of AS that do not affect the musculoskeletal system.
Where Do I Find Resources?
Elin from SAA says to, “First, speak with your physician about AS and treatment options. The Spondylitis Association of America also offers in-depth, physician-vetted information on ankylosing spondylitis and related diseases, as well as robust support resources.” The SAA also features a quick inflammatory back pain quiz on their site.