Finding a New Biologic After the First Fails

Just when things felt like they were getting steady with Keegan’s treatment plan, that all went out the window. We’ve been through a long diagnosis, multiple treatment plans, and a double hip replacement (plus starting a family). Things were steady; they were good. Until they weren’t last year when Humira wasn’t helping anymore.

It was a slow process over a few months of Keegan noticing that flare-ups were more severe, brain fog more common, and a general sense that things weren’t as good as they used to be. I had just made a big career change and our daughter started Kindergarten. We didn’t suspect Humira’s effectiveness to be the cause of this. Was it stress? Something with the weather? Not adhering to the Mediterranean diet as much?

It got to the point where Keegan stopped taking Humira altogether and didn’t notice much of a difference. The process was a strange process of elimination.

We speculated all the reasons why Humira no longer worked

Everything from building up some kind of tolerance to going off and on of Humira again and again. (His doctor recommended that Keegan not take Humira when he was sick. Unfortunately, that’s pretty frequent with two young kids in school.) I read a bit online to see that it is not uncommon for patients to need to move from one biologic to another, or even explore other treatment options.

During this time, I felt completely panicked and almost paralyzed by the “what ifs.” What if Keegan couldn’t find another successful treatment plan? Would we need to put the kids in daycare? How would we afford those additional expenses? How long would it take before we knew if another treatment worked?

My mind spiraled out of control, and it felt like going through the diagnosis journey all over again. It brought up intense feelings of uncertainty, lack of control, and a deep fear of our lives being irrevocably changed. I didn’t realize how challenging the emotional part of this process would be, nor did I expect it to happen so soon after starting his treatment. (Or at least, what I perceived to be soon.)

What now? It’s a scary place, but there’s hope

But, Keegan being the resilient and patient person he is, kept charging ahead. He luckily got an appointment with his rheumatologist quickly and found out he’d be a candidate for Cosentyx, a medication that clinically is shown to treat AxSpa better than Humira and other biologics. Keegan’s worked hard getting back on a new medication as quickly as possible: contacting the specialty pharmacy, getting blood work done, getting copay support from Cosentyx, and the back and forth of coordinating across so many clinicians. Even so, it’s taken almost 5 months to get everything lined up.

When I came through the door today, I saw on the dining room table a new sharps container, alcohol pads, and a big packet of information about the medication. I nearly cried knowing that relief was in sight for Keegan. Watching his near-constant flare-ups, all-time highs of chronic pain, and the haziest of brain fog was heartbreaking.

I hope we don’t have to worry about another treatment option until much later down the road. For those of you who’ve navigated new treatment plans, how have you managed the physical and emotional toll of that process?