By Chassity Stewart, as Hallie Levine
I’m no stranger to autoimmune disease: I was diagnosed with ulcerative colitis, an inflammatory bowel disease (IBD), in 2003. However, I had unknowingly suffered from AS symptoms for years and mistook some of them for my ulcerative colitis. Thankfully, I was diagnosed with AS in 2019 and received the necessary treatment within a year. My biologics journey has been long and often painful. But it was the right decision for me, and it is for many people 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 disorders. I’ve had symptoms like severe hip and back pain for years, but doctors always saw it as part of the overall inflammation associated with my ulcerative colitis.
Over time, my symptoms worsened. I woke up one day with my knee inexplicably swollen like a softball. It lasts for a few weeks and then eventually goes away. In a few weeks, it will be my wrist or my knee. It even affected my jaw over time. It would swell very badly and I would have to work hard to close it. It’s really scary and no doctor will offer any solution other than NSAIDs or steroids. But these seem like superficial solutions to a very deep problem. In 2019, I finally saw a rheumatologist who took an x-ray and immediately diagnosed me with AS.
weigh the pros and cons
When I was diagnosed with ulcerative colitis in the early 2000s, my doctor actually suggested biologics. But at the time, there was some early research showing that use of biologics might triple the risk of cancer. There are also few data on the safety of these drugs when used during pregnancy.
When I was diagnosed with AS in 2019, this thinking has completely changed. The reassuring news is that biologics do not increase cancer risk, and most appear to be safe for use during pregnancy. In fact, my rheumatologist insisted that it would be worse to let my AS inflame unchecked and wreak havoc on my body.
I agree with her. I didn’t just experience joint pain and swelling: I also experienced eye inflammation, or uveitis. I have three young girls – ages 13, 10 and 5 – who need me to be as healthy as possible. I worry about what AS is doing to my other organs. I’ve tried medications like anti-inflammatories and steroids, as well as complementary treatments like acupuncture. Seems like it’s time to chart a new course.
Don’t give up after the first try
There are currently six FDA-approved biologic drugs for AS, so don’t throw in the towel if the first drug you take doesn’t work or causes extreme side effects. 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 lasts for 24 hours. I’ve never experienced such intense pain before. It hurts to move, unable to sit up and turn over. My rheumatologist thought it was a coincidence and suggested I try again. Half an hour after the second infusion, I had a full-blown allergic reaction, including hives and difficulty breathing.
After that I was afraid to try a different biologic, but my rheumatologist suggested I try again. This time, the drug worked its magic. I respond quickly and have no side effects. Thankfully, with so many biologics now available to treat AS, if you don’t respond to your first, second, or third drug, there are always more options until you find the right one .
Biologics could be a game-changer
The hardest part of AS is the swelling around my joints. I was often so swollen that I couldn’t move. Now I don’t have swelling. I do still have stiffness and pain, but it’s easier to handle than the constant swelling. For me, exercise is lotion. If I force myself to move and do things, the pain and stiffness get better very quickly. Finally, after years of constant discomfort, I felt like I was born again.
But it’s not just the fact that the biologic relieves my symptoms. I also know that they suppress inflammation that increases my risk for other diseases, such as heart disease, and even certain cancers, such as lymphoma. It reassures me that I’m doing what I need to do to ensure I live a long, healthy and relatively pain-free life.
Editor’s note: Another drug has been approved since this article was first published. There are now seven approved treatments.
