“Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacter that have spread throughout the body. Some people have died from these infection. HUMIRA may increase the chance of getting lymphoma, including a rare kind, or other cancers. HUMIRA can cause serious side effects including hepatitis B infection in carriers of the vuris, allergic reactions, nervous system problems, blood problems, heart failure, certain immune reactions including a lupus-like syndrome, liver problems, and new or worsening psoriasis.”
Sounds a little scary, right?
How about this: a spine fused into a single rigid bone shaped like a question mark, damaged vision from years of iritis/uveitis, chest tightness, knee and other joint pain so intense you can’t move, bowel dysfunction, breathing complications, heart conditions, and constant fatigue.
Which one is scarier?
I’m 27 years old with a lot of life left to live. I shouldn’t have to be choosing one of these two outcomes; but my diagnosis of ankylosing spondylitis has put me in a position where that is my reality. Maybe I can exercise and change my diet and manage some of the symptoms, but what if that doesn’t work? I already have SI joint fusion and I’m not sure if it’s worth that risk. What if I chose not to go on the medication and ended up with a crippled, fused spine? What if I can never run around with my future kids, or go for family hikes with my dogs? I have a vision of what I want my life to be like, and I’m going to do whatever I can to try to make that my reality.
I’m an engineer- I studied chemistry and biology in college and think of problems with calculated logic and scientific analysis. If I can take a drug that is engineered to block the inflammation-causing proteins in my body, and slow the progression of this disease, I’m sure as hell going to strongly consider it.
Theoretically the Humira will interfere with the proteins causing the inflammation that results in the structural damage and new bone formation in my spine, thus slowing the ability of the disease to progress.
The unavoidable downside- the same proteins that are blocked by Humira are the ones that keep me healthy, so I now would have to deal with a compromised immune system (the reason for the increased risk of infection mentioned earlier).
This is the internal monologue I faced two years ago when I was diagnosed.
So how did I make the choice? Which risks and side effects would I rather face? My eye doctor had told me I risk permanent vision loss if I continued getting iritis like I had been. My rheumatologist told me that if I decided not to start a biologic medication he’d see me in 10 years with a completely fused spine. I trust them both and their prognoses. I understood the science behind their recommendations.
It was all scary, but the risk of rapid degeneration from AS has always been scarier for me- so two years ago I started treatments of Humira.
