I’m sitting in my kitchen, trying not to add Parmesan cheese and a shot of vinegar to my hot chocolate. A month ago, the thought of this bizarre concoction would have made my stomach turn somersaults. But after three weeks of high dose steroids, all bets are off.
Corticosteroids (not to be confused with the kind of steroids used by that guy you always see at the gym whose arms look like they ate a fellow Planet Fitness member) are the Tiger Balm of “hardcore” medicine; they’re used to treat everything from poison ivy to cancer to autoimmune disease.
When I go to my doctor at the first whisper of a lupus flare, I know she will call in prescription for steroids. Cortisone, a synthetic form of a hormone that naturally occurs in the human body, will fight to squelch the inflammation causing my symptoms – while making my face blow up like a basketball and my hair fall out in clumps.
Steroids are the standard first line of defense against a lupus flare and have been for nearly seventy years. Before the discovery of steroids, half of all lupus patients died within the first five years of their illness.
Cases of lupus were documented as early as ancient Greece, but scientists didn’t discover methods of treating it until the twentieth century.
The first arthritis unit in a hospital with a special interest in lupus was founded in 1932 at Massachusetts General Hospital by Dr. Marion Ropes.
Imagine a room full of forgetful people who hate mornings and don’t remember if they took their arthritis meds or not.
Half of Dr. Ropes’ patients got better and half died during the first two years of treatment. After years of observation, she was able to identify two types of patients- those with organ threatening disease, and those with lupus that mainly affected their skin and joints. Although she was able to predict which patients would die, she was unable to save them…
Dr. Philip Hench, the only rheumatologist to win a Nobel Prize in Medicine, used the newly discovered hormone cortisone to treat lupus in 1949.
If anyone on the Nobel committee was on corticosteroids themselves, they never would have voted for Dr. Hench. Instead, they would have gone back to crying over their pretzels dipped in chocolate ice cream while watching Lifetime movies and shooting up insulin.
So here I sit, seventy years later. A cup of hot chocolate in front of me. A face that stares back round and pudgy in the mirror. Probably a half dozen strands of hair on the floor. At least I didn’t develop diabetes like I did the last time I needed IV steroids.
“How are you doing today?” my best friend had texted me earlier.
“I hate everything,” I replied.
Did I mention that depression and irrational irritation are just one more lovely side effect of this delightful medication?
Over the years, I’ve reconciled my distaste for steroids with the knowledge that if it weren’t for this life-saving yet truly obnoxious drug, I wouldn’t be here today. Maybe steroids transform me into a fat, bald, irrationally irritated women who might stab you with a fork for standing between me and my cheese-flavored ice cream. But even a woman who adds Parmesan and vinegar to her hot chocolate is in a better place than a woman who can’t get out of bed.
I will spend the next few months slowly tapering off this terrible miracle drug- a process as frustrating and uncomfortable as starting them in the first place. As my face grows round and my clothes start to fit awkwardly, I will wish, like I always do, that I’ll never have to see one of those white oval pills ever again. But sometimes you have to swallow the poison to kill to demon within- and there’s no point in complaining about that.