My Experience With Humira (And Shingles!)
My first rheumatologist — who I had to drop due to bedside manners (or his lack thereof) — mentioned Humira straight after diagnosing me with ankylosing spondylitis. He dropped it with cool calm, but to me it felt like a bomb.
I was in denial
I was just about 31 and very, very mobile. I went into immediate denial mode. "There's no way I'm taking medication for the rest of my life," I immediately said to him. My brain wasn't prepared for this. The classic "not-me" thing hit me over the head like a ton of bricks.
Still, my father and aunt both had AS — and so did my grandmother, we think —and I had all the tell-tale signs: uveitis, stiffness, fatigue, the HLA-B27 gene marker, and my SI joints were always inflamed. He wanted to get ahead of the disease before it got ahead of me.
I got some more info
"It's an injection you'll self-administer every two weeks," he said. His steady, if not detached, voice told me, "I say this all the time."
When I asked him about the side effects, he was transparent. "It will effectively render your immune system nonexistent, so you'll be at risk for infections and cancer," he said.
"And cancer" got to me — not because I hadn't heard the commercials about Humira, but because he was so nonchalant about it. This didn't exactly help my denial, so I balked at the idea and sought another opinion.
My second rheumatologist — this time, so much nicer — recommended Humira as well. I was shocked. I thought, magically, that she'd offer up some magical, riskless alternative. She even said the words, "If this was me, I'd use Humira." She wasn't a bit fan of popping a bunch of NSAIDS daily.
I took a week to think about it and then I started Humira. When I went into the office for my instructional "intro to Humira" appointment, a nurse walked me through the whole injection. I don't know about you, but as a child it took four adults to hold me down when I needed a shot, and nothing changed.
I almost passed out
I wept, shook, sweated profusely, and nearly passed out. Okay, so maybe I'm overdramatic, but the idea of slamming the Humira injection pen into the fat of my thigh got me so worked up that my blood pressure shot up. I couldn't stop thinking about future side effects, but I knew plenty of people who swore by biologics. They gave them back their quality of life, their mobility, their confidence, and their hope.
I went home in a daze. I was a person who took medication, I thought. I was a person who needed medication. I had a disease. I fixated on all of this rather than seeing the positive — which is that it might work. That it might take away my pain and constant brain fog and exhaustion.
My Humira experience
The Humira experience was pretty pain-free (logistically). The Humira representative I was assigned to was a nice older woman who was extremely communicative. The medication came on time, and I got lots of goodies, like notebooks and support documents and symptom tracks, from the pharmaceutical company.
The medication came on ice when it was delivered and the instructions and patient information were very empowering. Still, I cried every time I had a Shot Day. My partner ended up injecting me every time. The feeling was shocking and unpleasant, but it wasn't intensely or horrifically painful. I was told they made the medicine less viscous so it didn't hurt as much going in. On a scale of 1-10, the pain was probably a 5 if I did some deep breathing before and through the injection.
It just wasn't for me
Sadly, Humira was not the answer to my questions. After several months, my doctor pulled me off of it at my request. I was not seeing any benefit at all (which is to say we all react different to every drug on the market!). Because the medication can lower your immune system, I kept getting sick with chest infections and I got a case of shingles that seriously took me out. I almost missed vacations, holidays, and other fun times because of all of this. Oh, and if you've ever had shingles you'll know how painful and horrific it is.
After quitting Humira I began using diclofenac (an anti-inflammatory NSAID) daily and employing a very strict movement/stretching and stress-management practice (which involved changing my career). It has helped get my symptoms under control in major ways, but I realize that this isn't the case for everyone and that one day I may have to use biologics again.
It was definitely quite the journey — but it taught me one thing about living with a disease: You have to advocate for yourself and listen to your intuition while also considering the opinion of experts. It's a balancing act.
It's not one or the other.
Do you use the word disability to describe your AS?