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Raging about steroids

October 22, 2023
Editor, First Opinion

While editing a powerful First Opinion essay from Judy Hoffstein, chief marketing and communications officer at the Crohn's & Colitis Foundation, on the dangers of long-term steroid use, I kept thinking about … my cat.

That might sound terrible, like when someone without kids tells a new parent, "I know exactly what you're feeling right now — I felt the same way when I brought my golden retriever puppy home."

But hear me out.

My elderly cat Callie has been on prednisone — the same steroid Judy was on for years for ulcerative colitis — for eight years now, after a sudden health scare. We never really got to the bottom of what was wrong with Callie, because the prednisone just … made it better. She regained weight and found her energy, becoming a cuddle monster again. Almost a decade later, she's still on it. And every time we go to the vet, they ask: Have we thought about getting her off of it? Keeping her on it long-term, the vet says, might be dangerous. But every time we try to wean her off, she gets sick again, so we've stuck with the daily prednisone, even knowing it puts her at risk of diabetes and other problems.

I thought about Callie while editing Judy's absolutely horrifying piece, which details the way steroids devastated her body: weight gain, psychological side effects, "facial mooning," facial hair, muscular loss in her thighs, and more.

She writes, "Despite these terrible side effects, I stayed on the prednisone for one reason: It made my disease more manageable. I no longer had to leave meetings — including ones I was leading — to use the bathroom every 20 minutes. My 30-minute subway commute was easier. My abdominal pain and intestinal bleeding were mostly gone. But every time I tried to reduce my prednisone dose below 20 milligrams a day, the pain and urgent diarrhea returned, my doctor bumped me back up to 60 milligrams, and the side effects resumed."

Today, Judy writes, there are new alternatives to steroids for many patients (though not, it seems, for cats). But they are still out of reach for too many: "Insurance companies frequently reject these newer medications, requiring that patients first try and fail steroids. But long-term steroid use dramatically changes a person's life and should be a last resort. All too often, it isn't. Patients deserve more options, and insurers must streamline the approval process for covering them."

I love my cat. But it makes me sad that her vets seem more worried about the long-term side effects of steroids than some human doctors and insurance companies are for their patients.

We'll save the story of my other cat, Goose, and gabapentin for another newsletter.

First Opinion was a little bit quieter than usual this week, as I was in Boston for the glorious STAT Summit, where many First Opinion authors either were in attendance or spoke (including Michael J. Fox!). I had the pleasure of meeting with one person whose most recent piece published this week: Brian Finrow, CEO of Lumen Bioscience, who writes about how his company is taking a novel approach to fighting antimicrobial resistance. Also in First Opinion: Tommy Bramley, Herbert Altmann, and Casper Paardekooper detail "How to make the EU's new Joint Clinical Assessment process work for industry — and for patients." Jason Bush of Avalon Healthcare Solutions examines the challenge of covering the explosion of genetic tests. Leonard Rubenstein wrote a heartbreaking piece about violence against medical workers in Gaza. And on the First Opinion Podcast this week, I spoke with Steven Phillips and Michelle A. Williams, authors of a recent First Opinion essay titled, "Long Covid is a new name for an old syndrome."

Recommendation of the week: STAT folks are tired of hearing me talk about this, but Netflix's "The Fall of the House of Usher," which combines Edgar Allan Poe with the Sackler family story, is a must-watch. And keep an eye on First Opinion, because we may have more on the show coming up soon.

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