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If you’re like most people who have axial spondyloarthritis (axSpA), you’ve waited years, perhaps even more than a decade, before getting a diagnosis. But now that you have one, the next step is to assemble your care team—i.e., a roster of doctors and specialists who can treat your arthritis, as well as any related complications that may appear.
There’s no one doctor who’s right for everyone. Rather, the best providers for you may depend on where you live, what type of health insurance you have, and how well they communicate with your other doctors. Here are a few ways to find them:
Ask for a referral. “It’s critical that the patient’s primary-care doctor has at least some open doors to a rheumatology practice,” says Christopher Ritchlin, MD, MPH, a rheumatologist at University of Rochester Medical Center in New York. “The patient needs to be seen sooner rather than later, because early intervention is critical.” Similarly, your rheumatologist will ideally have a working relationship with other specialists—especially a physical therapist.
Do your homework. You can find a list of rheumatologists in your area by searching the American College of Rheumatology’s provider directory. The Spondylitis Association of America also keeps a list of clinics and rheumatologists who specialize in spondyloarthritis and have been vetted by the organization’s medical board. Before you schedule an appointment, you may want to call the office or your health-insurance company to make sure the provider accepts your insurance.
Consider their availability. The right doctor for you will need to be accessible to you—so don’t hesitate to ask how long it takes to get an appointment and schedule follow-ups, as well as how quickly the doctor can be reached in an emergency. Ask whether they’re available by phone, email, or provider portal, and whether there are extra fees for these services.
Make sure you feel comfortable with them. Ask yourself if you’ll be more at ease with a doctor of a particular age, sex, or religion. Consider, too, if you need one who speaks your first language, or whether you can bring in a support person who can help with any communication barriers.
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Who they are: This is the point person for all your ongoing care.
Why you’ll need them: Because people with axial spondyloarthritis can be at risk for other health conditions, you’ll need a doctor who can work with any specialists you may be seeing to coordinate your medications and other treatments.
What to ask:
“How will you communicate with the other health providers on my team to treat my axial spondyloarthritis and any other complications that arise?”
“Do I have any pre-existing health conditions or allergies that would prevent me from starting a particular treatment?”
Who they are:Doctors who specialize in arthritis and other diseases that affect the joints, muscles, and bones.
Why you’ll need them: A rheumatologist can diagnose you with axial spondyloarthritis by performing a physical exam, a genetic test, and an MRI or X-ray. They can also treat the condition with medications such as biologics, including tumor necrosis factor (TNF) inhibitors and interleukin (IL-17) inhibitors.
What to ask:
“How will you work with my other doctors, including my primary-care provider, to treat my condition?”
“How long will it take to get an appointment?”
“What is your approach to managing axial spondyloarthritis?”
“How can I prevent complications from axSpA from occurring, and what preventative tests, if any, should I have?”
Who they are: Providers who specialize in movements and exercises.
Why you’ll need them: Physical therapists will provide you with an exercise plan that can help ward off back stiffness and pain while preserving your joint mobility and flexibility. “It’s recommended that anyone with a diagnosis of axial spondyloarthritis get a physical-therapy referral,” says John Reveille, MD, a rheumatologist with UTHealth Houston. “There are spinal-extension exercises that can help keep the spine from fusing while really helping symptoms too.”
What to ask:
“How will you work with me to make sure I’m performing the exercises correctly?”
“What exercises would you suggest I do, and how often?”
“How can these exercises protect my spine or improve my symptoms?”
Who they are: Doctors who specialize in treating a wide range of eye diseases.
Why you’ll need them: According to a review published in the September 2023 issue of the journal Nature, about 1 in 4 people with axial spondyloarthritis will develop a condition called uveitis—an inflammation of the eye that can cause symptoms such as blurry vision, floaters, redness, and, left untreated, vision loss. An ophthalmologist can spot uveitis with a slit lamp, a special type of microscope that can detect early signs of inflammation, says Dr. Ritchlin, as well as treat the condition with medications such as prescription eye drops or pills.
What to ask:
“How often should I be screened for uveitis?”
“What symptoms warrant an office visit, and how soon will you want to see me?”
“What type of treatment will you recommend if I develop uveitis?”
Who they are: Doctors who specialize in treating skin conditions.
Why you’ll need them: About 13 percent of people with axial spondyloarthritis develop psoriasis, a skin condition in which scaly patches can flare up on the knees, elbows, and scalp. A dermatologist can diagnose you with the condition—which sometimes goes overlooked, even by rheumatologists, according to a 2023 review published in Arthritis Research & Therapy—as well as treat the skin lesions with prescription medications, including topicals such as corticosteroids.
What to ask:
“How often should I have skin checks?”
“What other skin symptoms or issues should I bring to your attention?”
“What types of lifestyle changes should I make to ward off psoriasis symptoms?”
“Which medication do you recommend, and how might it interact with other medications I currently take?”
Who they are: Specialists who can treat mental-health conditions using talk therapy and other coping techniques; a psychiatrist can also diagnose mental-health conditions and prescribe medications.
Why you’ll need them: About 1 in 3 people with axial spondyloarthritis have anxiety and depression, according to a study published in January 2022 in the European Journal of Rheumatology. If you’re experiencing excessive worrying, sleep disturbances, trouble concentrating, and other such symptoms, you may want to seek out help from a mental-health specialist.
What to ask:
“How much experience do you have treating people with chronic conditions like arthritis, including axial spondyloarthritis?”
“What types of coping strategies will you teach me, and what kind of results can I expect?”
Who they are: Doctors who specialize in treating diseases that affect the digestive system, including inflammatory bowel disease (IBD).
Why you’ll need them: About 7 percent of people with axial spondyloarthritis also have IBD, including Crohn’s disease and ulcerative colitis, according to a study published in March 2022 in the Mediterranean Journal of Rheumatology, although it’s not exactly clear why the two conditions are linked. A gastroenterologist can monitor your condition as well as prescribe medication like biologics or immunomodulators, which can help prevent flares and keep you in remission.
What to ask:
“What types of lifestyle or dietary changes should I make to help stave off symptoms and prevent flares, both of IBD and axSpA?”
“Which medication do you recommend I take for IBD, and how might it interact with the medication I currently take for axSpA?”
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