My nr-AxSpa Biologic Journey: Part One
Since being diagnosed with non-radiographic axial spondyloarthritis in 2018, I have tried four separate biologics at various times. I am telling you about my experience with these biologics not to make recommendations or propose a cure, but to show that treating axial spondyloarthritis is not a linear path. What works for many people may not work for you and even what once worked for you may stop at some point. It can be frustrating when it seems there’s no clear solution, but hopefully, my story will show you that there are plenty of treatment options out there, and not just limited to biologics.
My first biologic was Humira. At the time I felt hopeful as my rheumatologist explained it is a widely used medicine and works for many people. I did find Humira’s system and their injector pen to be very user-friendly and a great start to what can be a very intimidating treatment plan.
My journey on this medicine only lasted a few months as I did not see any results, even after doubling my dosage. I was sad to move on, specifically because I had enjoyed my nurse advocate who checked in and talked me through injections. My physician and I decided collectively to stop Humira and take a short break before switching to my next medicine.
After Humira, I began injecting Cosentyx. My first impressions of this medicine were that the injection pen was much larger (though thankfully not the needle), the medicine stung a bit more, and there were fewer fun commercials on TV for my medication! Once again I saw no results early on and had to double my dosage.
What came next caught my rheumatologist and me off guard. I began having a paradoxical reaction to the medication, meaning my symptoms increased greatly and I had several major flares. At the time I didn’t know or didn’t remember that this was a possible reaction, but it was a lesson of just how unpredictable AxSpA can be.
My physician promptly took me off of Cosentyx and prescribed a quick round of prednisone to get over the flare and get the medicine out of my system before turning to other options. At this time I also switched rheumatologists because I moved cities, so I decided to take a few months off of any biologics as well.
Armed with the knowledge of my history with biologics, my new rheumatologist decided to start Enbrel. Her rationale was that within the family of biologics, Enbrel is like a cousin of Humira because they are both TNF inhibitors, and Humira was better for me than Cosentyx had been. And hooray! For the first time since my diagnosis, I saw a notable difference in my fatigue, pain, and psoriasis. The relief made me realize just how severe my symptoms had become in the two years since my diagnosis.
Sadly, as quickly as the joy began, it ended. I had been using the injection pen with Enbrel as I had with the previous medicines. I noticed injection site reactions, a normal side effect of any biologic and especially Enbrel. However, every week when I would do my next injection at a separate site, the previous reaction would re-emerge. The reactions continued to become more and more severe and my rheumatologist decided to take me off of Enbrel in fear of a full allergic reaction, or worst case, anaphylactic shock.
I felt defeated
I was defeated at this point. It was so frustrating that I had finally found relief and I wasn’t allowed to continue living that way. My physician was scratching her head as to what the next steps should look like. She told me that because I have non-radiographic axial spondyloarthritis, I have access to fewer treatment options. This was the first time I had heard that there is a difference in approved medications for radiographic and non-radiographic AxSpa. Another roadblock! She had an idea for a new medication that was in a completely different family than those I had tried before, so on to the next.
Do you have a question about axial spondyloarthritis you have been trying to get answered?