Axial Spondyloarthritis With a Side of Peripheral Arthritis

Last updated: December 2021

A cold front has arrived and my joints are rigid and slow to respond. Not just the joints in my back and hips, but peripheral joints as well. I bundle up when outside, but the below-zero wind chill forces its way through cloth and skin, settling unwanted in the spaces between my joints.

As many of us know all too well, axial spondyloarthritis is rarely confined to the spine. Peripheral arthritis, arthritis that affects the joints in the limbs, and it’s a fairly common symptom among us spondys. In fact, a recent study shows that “36% of [AxSpA] patients reported peripheral arthritis at any time of the disease” with a greater prevalence in patients 33 years or older."1

Developing peripheral arthritis with my ankylosing spondylitis

I developed peripheral arthritis the year I turned 30, a few years before the mean age. The symptoms in my lower back had been around for over a decade but I was still searching for a diagnosis. It was the swelling and joint pain in my hands and knees (which wouldn’t normally indicate AxSpA) that sent me to the rheumatologist for my diagnosis. I was highly skeptical of the healthcare system at that point, after having my back pain dismissed by physicians for over a decade. But when the arthritis got so bad that I had trouble holding a fork, writing, or really doing much of anything with my dominant hand, I knew it was time to seek help.

Oddly, part of me feels like I should thank this onset of peripheral arthritis because it finally got physicians to take my symptoms seriously and consider a diagnosis, but I could have done without the additional pain. The reality of the situation is that it should not have taken more symptoms, and symptoms not localized to my spine, to make doctors take my back pain seriously. But that’s another topic altogether, and one I’ve re-hashed over and over again.

My affected joints

A recent x-ray of my left knee demonstrated what I already knew was there--a narrowing of the joint space due to arthritis. Peripheral arthritis typically manifests in the joints of the lower limbs for those of us with AxSpA, but of course that’s not always the case. I do experience the majority of my peripheral arthritis in my knees and feet, but it also affects the knuckles in my hands.

I can honestly say that my symptoms have improved over the past year (most likely due to new medications), but there was a time when I couldn’t walk around a mall or stand at the front of a class for longer than 30 minutes at a time without giving my feet a break from the intense pain. There are still days where I strap on my knee brace to add a little support and pressure to my achy left knee. And as much as I’d love to sport a pair of Chucks in the style of Madam Vice President Kamala Harris, I’m afraid to wear any footwear that doesn’t provide quality support and comfort for the sake of my feet and my back.

Peripheral arthritis and disease burden

There’s also a darker side to peripheral arthritis in those of us diagnosed with AxSpA. It’s not merely pain in different joints of the body. As one recent study determined, AxSpA patients who also have peripheral arthritis show a “high burden of disease” as expressed by a “deteriorating quality of life,” greater use of disease-modifying antirheumatic drugs (DMARDs), and a higher use of sick leave."1

I don’t know if that’s true in my case. I don’t have anything to compare my experience to in this respect. But I do know that my peripheral arthritis is another nagging complication, one that captures my attention more thoroughly sometimes than the ever-present dull ache in my lower back, which I’ve grown accustomed to.

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