Finally turning to a biologic to treat my ankylosing spondylitis

By Chassity Stewart, told to Hallie Levine

I’m no stranger to autoimmune diseases: I was diagnosed with ulcerative colitis, a type of inflammatory bowel disease (IBD), in 2003. Yet I unknowingly suffered from symptoms of ankylosing spondylitis (SA) for years mistaking some of them for my ulcerative colitis. Fortunately, I was diagnosed with AS in 2019 and received the necessary treatment within a year. My journey to biologic medicine has been long and often painful. But it was the right decision for me, as it is for many AS patients.

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 eventually diagnosed with AS have both. I had symptoms such as severe hip and back pain for years, but doctors always dismissed it as part of the overall inflammation related to my ulcerative colitis.

Over time, my symptoms got worse. I woke up one day with a knee mysteriously swollen like a softball. It will last a few weeks before finally 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 that I would have to fight to close it. It was really scary, and no doctor would suggest anything other than nonsteroidal anti-inflammatory drugs or steroids. But these seemed like superficial solutions to 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 me a biologic in the early 2000s when I was diagnosed with ulcerative colitis. But at the time, there were some early studies that suggested organic use might have up to three times the risk of cancer. There was also little data on the safety of using these drugs during pregnancy.

The thinking had completely changed by the time I was diagnosed with AS in 2019. There was reassuring news that biologics did not increase cancer risk and most appeared to be safe in pregnancy. In fact, my rheumatologist was adamant that it would be a whole lot worse if the inflammation in my AS went unchecked and wreaked havoc throughout my body.

I agreed with her. I didn’t just have pain and swelling in my joints: I also suffered from eye inflammation or uveitis. I have three young daughters – 13, 10 and 5 years old – 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 complementary treatments like acupuncture. It seemed time to chart a new course.

Don’t give up after your first try

There are currently six FDA-approved biologic drugs for AS, so if the first one you take 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 ER with severe joint pain and a rash all over my body. It lasted 24 hours. I had never felt such extreme pain before. It hurt to move, and I couldn’t even sit up or turn around. My rheumatologist thought it was a coincidence and recommended I try again. Half an hour into my second infusion I had a complete anaphylactic reaction including hives and difficulty breathing.

I was afraid to try another biologic after that, but my rheumatologist suggested I give it another shot. This time the medicine 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 answer the first, second, or third, there are always more options until you find the right solution.

Organic products could be a game-changer

The hardest part of AS was the swelling around my joints. I was often so swollen that I couldn’t move. Now I have no more swelling. I still have stiffness and pain, but it’s much more manageable than the constant swelling. For me, movement is a lotion. If I force myself to move and do things, the pain and stiffness gets better quickly. Finally, after years of relentless discomfort, I feel like I have my life back.

But it’s more than just the fact that the organic products alleviate my symptoms. I also know that they reduce inflammation which increases my risk of other diseases, such as heart disease or even certain cancers such as lymphoma. It reassures me that I am doing exactly what I need to do to ensure that I live a long, healthy, and relatively pain-free life.

Editor’s Note: Since this article was first published, one more drug has been approved. There are now seven approved treatments.