By Chassity Stewart, as told to Hallie Levine
I’m no stranger to autoimmune disease: I was diagnosed with ulcerative colitis, a type of inflammatory bowel disease (IBD), in 2003. Yet I unknowingly suffered symptoms of ankylosing spondylitis (AS) for years, mistaking some of them as related to my ulcerative colitis. Thankfully, I was diagnosed with AS in 2019 and on the necessary treatment within a year. My journey to a biologic was long, and oftentimes painful. But it was the right decision for me, as it is for many patients with AS.
Push and Push Until You Get the Right Diagnosis
Most people don’t realize that IBD and AS can go hand in hand. Up to 10% of all patients ultimately diagnosed with AS have both. I had symptoms such as severe hip and back pain on and off for years, but doctors always dismissed it as part of the overall inflammation related to my ulcerative colitis.
Over time, my symptoms worsened. I’d wake up one day with a knee mysteriously swollen up like a softball. It would last for a few weeks before eventually disappearing. Then a few weeks later it would be my wrist or my knee. Over time, it even affected my jaw. It would be so swollen I’d have to fight to close it. It was really scary, and no doctor would offer any solution other than nonsteroidal anti-inflammatories or steroids. But these seemed like superficial solutions for a very deep problem. In 2019, I finally saw a rheumatologist who did X-rays and diagnosed me with AS right away.
Weigh the Benefits and Risks
My doctors actually suggested a biologic in the early 2000s when I was diagnosed with ulcerative colitis. But back then, there were some early studies that suggested that biologic use might have up to a threefold increased cancer risk. There was also little data about how safe these drugs are to use during pregnancy.
The thinking had completely changed by the time I was diagnosed with AS in 2019. There was reassuring news that biologics didn’t increase cancer risk and that most appeared be safe to use during pregnancy. In fact, my rheumatologist was adamant it would be a lot worse to let the inflammation from my AS go unchecked and wreak havoc across my body.
I agreed with her. I wasn’t just having pain and swelling in my joints: I was also experiencing eye inflammation, or uveitis. I have three young girls – ages 13, 10, and 5 – and they need me to stay as healthy as possible. I worried about what AS was doing to the rest of my organs. I’d already tried medications like anti-inflammatories and steroids, as well as complimentary treatments such as acupuncture. It seemed time to chart a new course.
Don’t Give Up After Your First Try
There are currently six FDA-approved biologic medications for AS, so if the first one you’re put on doesn’t work or causes extreme side effects, don’t just throw in the towel. The first one I tried was infliximab (Remicade). After the initial infusion, I ended up in the emergency room with severe joint pain and a rash across my entire body. It lasted for 24 hours. I’d never been in such extreme pain before. It hurt to move, and I couldn’t even sit up or roll over. My rheumatologist thought it was coincidence and recommended I try it again. Half an hour into my second infusion, I had a full-on anaphylactic reaction, including hives and trouble breathing.
I was scared to try a different biologic after that, but my rheumatologist suggested I give it one more shot. This time, the drug worked like a charm. I responded quickly with no side effects. Thankfully, there are now so many biologics available to treat AS that if you don’t respond to the first, second, or third, there are always more options until you find the right fit.
Biologics Might Be a Game-Changer
The hardest part of AS has been the swelling around my joints. I’d often be so swollen I couldn’t move. Now I have no swelling. I do still have stiffness and pain, but it’s much easier to deal with that than the constant swelling. For me, motion is lotion. If I force myself to move and do things, the pain and stiffness quickly get better. Finally, after years of unrelenting discomfort, I feel like I have my life back.
But it’s more than just the fact that biologics ease my symptoms. I also know that they tamp down the inflammation that raises my risk for other conditions, such as heart disease or even certain cancers like lymphoma. This gives me reassurance that I’m doing exactly what I need to do to ensure I live a long, healthy, and relatively pain-free life.
Editor’s note: Since this article was first published, another drug has been approved. There are now seven approved treatments.