Why I’m Not on a Biologic
Last updated: November 2023
Each time, so far, my answer has been no.
At which my rheumatologist nods and says “ok”.
Our appointments are a collaborative process, which I know I’m very lucky to experience
This doctor is a brilliant, highly regarded specialist and what he doesn’t know about AS probably isn’t worth knowing. But while he’s professionally obligated to offer me access to a biologic, he still acknowledges my final say in all treatment decisions. He’s also interested in my approach and tells me to “keep doing what you’re doing”.
At the time of diagnosis (ten years ago) my scans showed bone change in my SI joints and I was pronounced to have ankylosing spondylitis.
In the years following I committed to trying everything possible to bring down my inflammation levels and reduce my symptoms. For the most part, my efforts were successful. Pain would come and go but it never went back to those excruciating levels.
Periodic scans and blood tests over the years continue to show little to no inflammation or detectable bone change. My range of movement is increasing over time. According to my rheumatologist, my disease activity level is now at an all time low.
So even though the best-practice medical treatment for AS is biologics, at this stage I am still declining the offer
It’s something I’ve been openly criticized for many times within the AS Community. There’s a perception that biologics are the only way to prevent progression and to not take them is irresponsible.
As someone who is not anti-medication (I’m actually a big fan of medical treatment and supervision for AS) I certainly never say never when it comes to the biologic decision. If my disease activity suddenly ramped up again I would certainly be revisiting this as an option to protect myself.
But currently, with no signs that I’m progressing and no major flares for a period of years, I just don’t feel that’s a course of action I need to follow. The fact that my specialist supports that decision eases my mind greatly, as I trust and value his opinion.
I’m always extremely respectful of each person’s right to choose their own treatment approach for AS. It’s a personal matter and we never truly know what each person is going through, what supports they have and what else they know about their body and their health story.
People who are on biologics, or any other medication, or no medication are all simply following what they believe to be the best course for them in managing their disease.
Many more people wish they had the privilege of being able to access treatment or make a choice at all
I don’t often feel comfortable talking about my medication decision with others who have AS because I know I’m likely to attract some hostility. I get tired of explaining and defending myself, because I honestly don’t believe the decision I’ve made is irresponsible or misguided, its what’s right for me at this time.
I feel like I’ve put an enormous amount of effort into learning everything I can, making difficult changes and working every day at improving my general health so that AS doesn’t dominate my life.
For as long as that works, I’ll keep doing what I’m doing. But I still do have AS and I don’t know what the future holds for me or what I may need to reconsider down the track.
I hope in sharing perspectives like mine we all might be able to have more nuanced and fewer polarizing conversations around the medical management of AS and the issue of biologics.
Do you notice worsening flares in colder weather?