Since launching this blog, I’ve been on three immunosuppressants: Humira, Enbrel and now Cosentyx.
Humira felt like a wonder drug to me until I started to crash for no apparent reason – crushing fatigue, foggy brain, confusion. I got lost in a doctor’s office, and I’m the one with maps in her head. Take me to a place and I’ll always remember how to get back there — except when on Humira.
Enbrel has a similar molecular structure, but we tried it anyway. Meh. Instead of reducing my pain and discomfort significantly, say 90% (a miracle), it reduced it to more like 60%. My neck continued to bother me, and I didn’t go through a day without substantial neck pain, while my shoulders and pecs morphed into taut sails, tender to the touch. And my feet. My feet HURT. Every day. It was as if my soles had been whacked with a log, over and over, leaving deep bruising. Dealing with the nagging discomfort of a Morton’s neuroma every day was hard enough, but this nasty foot discomfort pushed me over the edge.
There are times when I’ve felt too much like my father, who complained often of pain in his feet, and whose lumbering gait was visibly affected by it. I don’t like the ghostly inhabitation I experience in those moments. It’s too mechanical, too inherited, too tied to being obese and not taking care of oneself, at all.
It’s also come to my attention that these medications may be affecting my mood states and inducing symptoms I’m not ready to talk about yet. Of course I’ve spoken with my mental health support system about this, and I’ve informed my rheumatologist. No surprise that he said such connections are “extraordinarily rare” and basically dismissed me. Ah, I wanted to scream, ask my family about “exceedingly rare” and Meghan.
My life has been littered with health woes that wouldn’t be classified as “common,” so it’s not that difficult to take the doc’s dismissal with a grain of salt. I’d still have hearing in my right ear had an ENT listened to me (the irony) instead of blowing off treatment to the point of no return. At 15 years of age, I didn’t have the ability to fight for myself, and I didn’t dare complain.
One day, not long before I had surgery to remove my right ear drum and “hearing” bones, I sat in the ENT’s chair while he scoped me, writhing in pain. The doctor said, “what’s wrong, I’m barely touching you,” and my mother stood near the door, a frown on her face. She was mad, believed I was being dramatic and making things difficult for the doctor. She believed him over me, and I never forgot how that made me feel. So began my lifetime struggle with being believed. I still struggle with it.
My father’s favorite phrase that he levied against me as a kid: “Stop playing games.” Nevermind that my brain was persistently setting off flares, rage bubbling, my mind a cauldron of mixed states. I wasn’t playing games. I was carried on giant sparks rising from a conflagration within me, a terrified and confused kid who struggled mightily to control her emotions. But no one seemed to care much, or else they feared me.
To this day I’m the one who carries the stigma of “uh oh, watch out, she may blow!”, even as I have worked doggedly to find that space between explosive reactivity and measured thoughtfulness. Most of the time I’m able to tend the fire without it burning anyone else.
It remains a daily struggle, but I’m equipped with many tools now that help me catch myself before things get too out of hand.
Who really knows if biologics affect one’s mood. I suspect that drug companies that are making hundreds of millions of dollars off of these drugs would rather that connection not exist. But let’s be honest about our knowledge of the brain – we know so little. My current perfect storm of perimenopause/menopause, mental distress, COVID weariness, job stress, pain and more pain make it difficult to tease out cause and effect. I can only speak to my experience, how it feels managing this disease day after day, what it’s meant to hit an impenetrable wall of limitations that I did not anticipate.
I wonder how the hell I’m going to live out my life this way, and whether or not it will be cut short. Autoimmune diseases do that, shorten the life span. There’s no reversing this, either. No diet, no magic pill, no experimental treatments. Just a shot in the gut every week and the desperate hope that relief isn’t far behind.
And you, reader. I feel you.
Everything is Always Over 