To Biologic or Not to Biologic?
"I'd recommend starting a biologic," Keegan's rheumatologist suggested at our first appointment. Keegan, my husband, and I were still wrapping our heads around the diagnosis he received only 6 months prior. We finally found a rheumatologist at Johns Hopkins that we found supportive and helpful. Coming into Keegan's first-ever appointment as his caregiver, I remember preparing tons of questions, mostly around how to treat AS. But I didn't think something like a biologic would be recommended without trying other treatments first, like NSAIDs or more physical therapy.
The side effects scared me
When I read the side effects of biologics, I was immediately petrified. Risk of cancer? TB? Major infections? Why would anyone in their right mind take this medication? The worry was already in my mind of whether AS would shorten Keegan's life span, but I didn't consider the treatment could do that as well.
I ran and told Keegan what I had read. We decided that he'd try every other possible treatment, both traditional western medicine, and homeopathic remedies. We tried everything his doctor recommended and more--vitamins and herbs, medical marijuana, diet changes (no sugar, no dairy), physical therapy, medical-massage. The list goes on. And while there were at times slight improvements, nothing felt like it was worth the time, money, and effort being put into all these remedies. (Were they even remedies?)
Nothing really helped, and Keegan felt desperate
At this point in his life, Keegan had to face the facts. Nothing he was trying made a significant impact. It was heartbreaking to watch. I had read for hours and hours on Google anecdotes, except I'd skip over the ones about how helpful biologics were for many AS patients. I was convinced we'd find something else that would turn his AS symptoms around 180 degrees.
But Keegan decided that his quality of life at that point wasn't really at a place he could call "living." He could barely walk 2 blocks down the street. We couldn't even consider having a family. Keegan wanted to continue doing art, but could barely get himself dressed some days. Would the risk be worth it?
I shared my fears with his rheumatologist
At the next appointment, we talked through everything with the rheumatologist. Our fears and hopes were heard. And she was very reassuring that they'd monitor Keegan's blood to look for any problems. But she also went further in-depth to explain the risk of the side effects we hear about on TV. She explained what the actual probability would be for Keegan to develop a life-threatening condition, which was extremely small, and that all those studies were done with patients who have rheumatoid-related diseases, but not AS. In her eyes, if there was hope to put his AS into remission, a biologic would be the best next step.
So Keegan went on Humira and hasn't looked back since. We've had 2 kids, bought a house, moved twice, and Keegan seems like himself again. Biologics aren't for everyone, and it can be a very difficult decision. But, I thought it'd be helpful to walk through our story and how anxious we were to start on a biologic.
How long was your longest flare?