From Chassity Stewart as told to Hallie Levine
I’m no stranger to autoimmune diseases: in 2003 I was diagnosed with ulcerative colitis, a type of inflammatory bowel disease (IBD). Yet for years I unknowingly suffered from symptoms of ankylosing spondylitis (AS), mistakenly associating some of them with my ulcerative colitis. Luckily I was diagnosed with AS in 2019 and received the necessary treatment within a year. My path to becoming a biologic was long and often painful. But for me, as for many patients with AS, it was the right decision.
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’ve had symptoms like severe hip and back pain for years, but doctors always dismissed it as part of the overall inflammation associated with my ulcerative colitis.
Over time, my symptoms worsened. One day I woke up with a knee mysteriously swollen like a softball. It would be a few weeks before it finally went away. Then a few weeks later it was my wrist or my knee. Over time it even affected my jaw. It would be so swollen that I would have to fight to close it. It was really scary and no doctor would offer any solution other than NSAIDs or steroids. But these seemed to be superficial solutions to a very deep problem. In 2019 I finally saw a rheumatologist who took x-rays and immediately diagnosed me with AS.
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 using biologics could have up to a three-fold increased risk of cancer. There was also little data on how safe these drugs are to use during pregnancy.
When I was diagnosed with AS in 2019, my thinking had completely changed. There was reassuring news that biologics did not increase cancer risk and that most appeared safe to use during pregnancy. In fact, my rheumatologist was adamant that it would be much worse if the inflammation in my AS went unchecked and ravaged my body.
I agreed with her. Not only did I have pain and swelling in my joints, I also had an eye infection or uveitis. I have three young girls – at the ages of 13, 10 and 5 years – and they need me to stay as healthy as possible. I worried about what AS was doing to the rest of my organs. I had already tried medications like anti-inflammatories and steroids, as well as complimentary treatments like acupuncture. It seemed time to chart a new course.
There are currently six FDA-approved biologic drugs for AS. So if the first drug you take doesn’t work or causes extreme side effects, don’t just throw in the towel. The first thing I tried was infliximab (Remicade). After the first infusion, I ended up in the emergency room with severe joint pain and a rash all over my body. It lasted 24 hours. I’ve never had such extreme pain. It hurt to move and I couldn’t even sit up or turn around. My rheumatologist thought it was a coincidence and suggested I try again. Half an hour after my second infusion, I had a full-fledged anaphylactic reaction, including hives and difficulty breathing.
I was afraid to try another biologic afterwards, but my rheumatologist suggested I try again. This time the drug worked like a charm. I responded quickly with no side effects. Fortunately, there are now so many biologics available to treat AS that if you don’t respond to the first, second, or third, there are more and more options until you find the right solution.
The hardest part of AS was the swelling around my joints. I was often so swollen that I could not move. Now I have no swelling. I still have stiffness and pain, but it’s much easier to deal with than the constant swelling. Movement is lotion for me. If I force myself to move and do things, the pain and stiffness get better quickly. Finally, after years of unrelenting discomfort, I feel like I have my life back.
But it’s more than just the fact that biologics relieve my symptoms. I also know that they suppress the inflammation that increases my risk for other conditions like heart disease or even certain cancers like lymphoma. This gives me the confidence 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: One additional drug has been approved since this article was first published. There are now seven approved treatments.