That was the last time she was hospitalized. Over time, she stuck with the medications, even the prednisone, which she hated more than anything. Then one day, six years after the disease first settled in, and with significant trepidation, I discontinued the last 1 mg of prednisone.
Nothing happened.
Not that she was cured. Lupus isn’t cured, it goes into remission. And it wasn’t as if Amanda was off all medications. She kept a pillbox to manage the daily assortment of pills required for high blood pressure, gastritis, depression and anxiety. And of course, I never stopped the hydroxychloroquine or low-dose mycophenolate. Like a good insurance policy, they quietly protected her from lupus rashes and kidney inflammation, and she knew it.
Several years later, Amanda went on to college and returned that fall break to inform me, “Depression is about the past. Anxiety is about the future. If you’re at peace, you’re living in the now,” and then she laughed until tears ran down her cheeks. “No, really, that’s what my psychology professor said last week.” She held up two fingers in a V. “Peace,” and collapsed again in a fit of laughter. She slumped deeper into her chair, twirling a pen. I waited.
“Lupus sucks,” she said. “I know that it sucked when I was 13, and it sucks now, and it’ll suck when—and if—I make it to 30.” She straightened up, half smiling. “But you know, I’m okay with that. Deal me in. You know what I mean? Deal me in.”
And I think I did.
Charles Radis, DO, is clinical professor of medicine at the University of New England, College of Osteopathic Medicine and employed part time at Maine Coast Memorial Hospital in Ellsworth, Maine.
References
- Ippolito A, Wallace DJ, Gladman D, et al. Autoantibodies in systemic lupus erythematosus: Comparison of historical and current assessment of seropositivity. Lupus. 2011 Mar;20(3):250–235.
- Danchenko N, Satia JA, Anthony MS. Epidemiology of systemic lupus erythematosus: A comparison of worldwide disease burden. Lupus. 2006;15(5):308–318.
- Durcan L, Petri M. Why targeted therapies are necessary for systemic lupus erythematosus. Lupus. 2016 Sep;25(10):1070–1079.