Prednisone for Life: My Sarcoidosis Love Story I Never Agreed To

Prednisone and I have been in a long-term relationship I never actually consented to, the kind of messy entanglement you wake up inside one morning and realize, “Oh… so this is forever.” Back in 2006, when sarcoidosis first introduced itself like a polite houseguest who eventually steals the silverware, I was told I’d need prednisone “just for a little while.” A few months, they said. A temporary measure, they said. A quick intervention to calm my lungs down. What they didn’t say was that this “few months” would turn into decades, and that I’d eventually discover my adrenals had packed their little hormonal suitcases and left the building altogether.

When my pulmonologist first said “prednisone,” I hesitated. I did what responsible sick people do: I researched, I panicked, and then I researched more until the panic deepened into the kind of dread usually reserved for tax audits. I even consulted an Ayurvedic practitioner—who, coincidentally, also specialized in sarcoidosis—which felt like the universe finally giving me a wink of validation. He recommended the treatment too. When both Western medicine and ancient healing traditions agree on something, you say fine and swallow the pill.

I started at 60 mg a day, which is not so much a dose as it is a declaration of war. The “prednisone crazies” arrived right on time, like a deranged welcome committee. The mood swings were opera-level dramatic. The hunger? A beast. I don’t mean “peckish.” I mean “feed me now or I might chew through drywall.” Prednisone hunger is biblical. It doesn’t wait. It doesn’t reason. It just takes over and drags you along for the ride.

After about six months on this delightful roller coaster, my body settled into a new version of normal—or something that resembled normal if you squinted very hard in forgiving lighting. My doctor began tapering me down: 10 mg every two weeks. I made it down to 10 mg and felt triumph sneak in. Then he dropped me to 5 mg and my entire body revolted. I fell apart like wet tissue paper. The aches, the breathlessness, the misery—everything was worse than before I’d even started the drug. After a few days pretending I wasn’t dying, I crawled back up to 40 mg like a chastened addict returning to their dealer.

Over the next few years, we repeated this routine like a tragic reboot nobody asked for. Taper, collapse, increase. Taper, collapse, increase. Prednisone and I were in a toxic relationship, but every time I tried to leave, my lungs staged a protest.

At one point, under the watchful eye of a sarcoidosis specialist, we tried the slowest taper known to humankind. Every two weeks, my dose dropped by a microscopic 1 mg. I inched my way down to 5 mg. I thought, “Maybe—just maybe—this time I’m getting free.” And then, like clockwork, my body unraveled. Again. Back up I went.

Fast forward through about four taper attempts—with each one ending in disaster, drama, and a phone call to my medical team—and the final verdict became painfully, hormonally clear: my adrenals weren’t waking up. At all. They’d been napping for years and were now essentially retired. My doctors confirmed what I had begun suspecting each time my body collapsed during a taper: I no longer make my own cortisol. Prednisone isn’t just a treatment now; it’s a life support system. Stopping it isn’t an option unless I want to reenact a Victorian fainting death scene, and frankly, I have too much laundry for that kind of melodrama.

So yes, I am on prednisone for life. Begrudgingly. Irritably. Resentfully. But also with the weird affection that develops when something keeps you alive long enough to complain about it.

I used to daydream about the glorious day I’d be “prednisone-free,” floating through the world like some anti-inflammatory saint. Now, the closest I get to that fantasy is my doctor lowering me by half a milligram and watching my body immediately file a complaint with HR. The truth is, prednisone and I have accepted each other. I don’t love it. It absolutely doesn’t love me. But we coexist because my lungs never got the memo about functioning like a normal person’s lungs.

After two decades on this stuff—twenty years of moon face, joint pain, sugar cravings, steroid insomnia, adrenal suppression, and emotional volatility that could easily qualify me for a daytime soap opera role—I’ve learned to embrace the chaos with humor. I can’t come off it. I’ve tried. Four separate times. Each attempt went about as well as an unplugged ventilator. My body just doesn’t produce cortisol anymore, and that’s that. The adrenals have left the chat.

So here we are. Prednisone and me. A love/hate story for the ages. I can’t live with it. I can’t live without it. And trust me—I’ve tested both.

If you’ve ever tangled with long-term steroid use, or if you’re living with sarcoidosis and trying to find your own balance between survival and sanity, I’d love to hear your experience. Drop a comment or subscribe so we can navigate this beautiful, ridiculous, medically complicated life together.