The Many Doctors Who Manage My Axial Spondyloarthritis
One question I get often is "who treats axial spondyloarthritis?" Typically, this question arises from individuals with some of the symptoms of AxSpA but no diagnosis, so I figured why not talk a little about the different doctors I see to manage my disease.
The simple answer to the question above is a rheumatologist, but that’s only half the story. While a rheumatologist is often the main care provider, us spondys may see a handful of different specialists to help monitor and manage our disease.
Until recently, I would visit two specialists regularly to manage my AxSpA. But now I seem to be collecting doctors like they’re baseball cards, or to make the metaphor more contemporary, like it’s March 2020 and they’re packages of toilet paper. As new symptoms arise, new specialists are added to my care team. In the past year, that team has doubled in size.
I am currently seeing four specialists: a rheumatologist is the primary specialist who manages my disease, and three other specialists that monitor some of the different manifestations of my AxSpA.
1. A rheumatologist
The rheumatologist is the primary member of my AxSpA care team. Typically, this is the specialist who will diagnose the type of spondylitis. I bring all of my symptoms and concerns to my rheumatologist, who then proposes a game plan for treatment or refers me to other specialists based on the symptom.
2. An opthamologist
I see an ophthalmologist regularly for my uveitis, or eye inflammation. Eye inflammation is a common complication of AxSpA, often characterized by eye redness, pain, blurred vision, and light sensitivity (depending on the type of uveitis). For me, uveitis was one of the symptoms (in conjunction with joint pain and back stiffness) that sent me to a rheumatologist in the first place.
After suspecting uveitis, the rheumatologist then referred me to an ophthalmologist who diagnosed the uveitis. Since uveitis has the potential to cause damage to the eye and affect vision, I’ve been told that it’s crucial to see a specialist as soon as symptoms arise.
3. A gastroenterologist
Recently I began seeing a gastroenterologist for stomach pain and other gastrointestinal symptoms. It is unclear whether my GI symptoms are from my AxSpA or if they’re related to some form of IBD, but either way the treatment is the same. GI issues are also fairly common with AxSpA, which is one reason why I’ve incorporated a gastroenterologist and why she will remain a regular fixture of my healthcare team.
4. A dermatologist
Just this summer I visited a dermatologist for the first time. This past year saw several new symptoms manifest, and counted among those symptoms is psoriasis. Most of my psoriasis spots are small and disappear within a month or two. But one particular spot is painful, itchy beyond belief, and frustratingly persistent. Two separate rheumatologists identified the patches as psoriasis, but only the dermatologist would confirm and prescribe a cream to help treat it.
So that’s a bit about my healthcare team. In my experience, it does take a village to manage this particular systemic disease. And as much as I appreciate having a team of experts monitoring all my different symptoms, it gets a little old taking time off from work almost every month for a doctor’s appointment! Not to mention the regular blood work and semi-regular imaging tests.
How many specialists have you collected in your AxSpA healthcare team? Do you see alternative medicine practitioners as well?
Can you tell when a flare is coming?