My Decision to Take Humira
My diagnosis story has been all over the place. I was sick about 10 years ago — recurrent bouts of vicious uveitis, extreme fatigue, gut issues, and a general feeling of being "off." It wasn't until about 2017 that my back, hips, and sacroiliac joints starting seriously flaring up.
Previously, my doctors and ophthalmologists thought I had maybe a poor diet or some sort of contact irritation — all sorts of things that were generally inconclusive. For some time, they thought it was ankylosing spondylitis, but saw no radiographic evidence. This is because of my HLA-B27 positive testing and the fact that two of my family members have AS.
I needed medication
I saw two rheumatologists at two different hospitals in NYC (second opinions, in my opinion, are always good). I both of which diagnosed me eventually with AS after my spine showed some evidence of fusion. It was made clear to me by a rheumatologist that I needed medication, specifically Humira, to control the inflammation. I'll be honest: I felt exceptionally unsure of whether I should start it.
But there were risks
I knew that Humira, as important as it is to many, came with risks. As Humira's site says, "the chance of getting lymphoma or other cancers may increase"1 — and I also knew that it was an immunosuppressant, which means that taking it could make my immune system particularly weak and vulnerable. I also knew that AS is a degenerative disease and that not taking medication would be problematic down the line, possibly.
But again, it saves lives. It gives people their lives back. It helps people move and be with family and be happy again. So, there was a lot to consider — and with a gravitas that it deserved.
Making a decision
The way my rheumatologist put it was that it would be maybe safer, in the long run, to take Humira than to plie myself with NSAIDS like Ibuprofen every single day of my life, which could cause its own kind of damage. I don't know if this is entirely true, but I felt compelled to try Humira. I'd been using Advil up until that point, to manage my pain.
I'll be honest. I didn't want to. I didn't want to inject myself. To have to be the kind of person who gets delivery medication and takes it. How would I travel? How would I live always chasing this drug? What if I stopped having insurance? This all really truly disrupted my psyche. I felt like the injection pen was a symbol, a profound and painful representation of my body's infallibility. And that hurt. It meant I was human, and broken, and sick.
Of course, that was the grief talking. A few months down the line, acceptance — or the early signs of it at least— took hold and I no longer let myself view my body as bad or less than. I also knew that if I needed a drug, I logistically and resourcefully would solve all the worries I had about using it.
It didn't help
Unfortunately, Humira didn't help my pain. My flares continued. I also became so immunocompromised that I got a lung infection and shingles, which was probably the most painful thing I've ever experienced. I know Humira doesn't "cause" shingles or sickness. But it can increase your risk.
Unfortunately, my rheumatologist had me come off the drug. It wasn't helping, and I was getting sick. I was sad, though, that it didn't. That I didn't wake up one day totally "normal" again, as I'd heard Humira users say.
My body just didn't love it, and that's ok. I did end up losing my insurance, actually, and the struggle to get it back has been hard. That's because I freelance full-time and there are almost no cost-effective options when you don't have government aid or an employer subsidy.
But some other things did help
Luckily, I've been feeling pretty good for over a year. I've had one major, debilitating flare-up that lasted about a month, and only a few short flares, within the past year. When it's bad it is bad, but it's not constant. I've found that I can manage with diclofenac (an NSAID drug used to treat pain and inflammation associated with arthritis) when I'm sensing a flare. Otherwise, focused daily movement (tai chi, yoga, biking, low-impact workouts) and swimming, in particular, have been deeply effective for managing my pain. I notice that eating Mediterranean style and improving stress-reduction and sleep hygiene reduce pain and increase mobility. Reducing alcohol has changed my pain as well.
I know one day a biologic may be in my future, so we'll see what happens. I'm grateful to be feeling okay these days (and god, I hate needles).
Does reading AxSpA patient stories help you in your journey?