Steroids for vasculitis: The love-hate relationship we never asked for

Remember when the phrase “this is a hamburger on steroids” just meant a ridiculously big burger piled high with toppings? Before I got sick, “on steroids” was just a funny exaggeration.

Now that I’m living with ANCA-associated vasculitis, though, that phrase hits differently. Steroids are no longer just something athletes get in trouble for using or a punchline for oversized food. They’re part of my reality.

For many of us with vasculitis, steroids like prednisone were the first line of defense that quite literally kept us alive. Some people are fortunate enough to taper off completely. Others remain on low doses for years, and some of us go through the on-again, off-again cycle depending on how our disease behaves.

No matter which group you fall into, it’s rare to meet anyone with vasculitis who hasn’t had a close encounter with these powerful little pills.

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February 1, 2022 Columns by Allison Ross

Prednisone: A Friend or Foe?

The roller coaster ride

Steroids affect everyone differently, but there are a few “greatest hits” most of us recognize:

• Sudden and significant weight gain
• Insatiable hunger, especially for carbs
• Wild energy swings — from “10 shots of espresso” to “can’t lift my head off the pillow”
• Mood swings, anxiety, and irritability that can leave us (and our loved ones) wondering who this new person is

Despite all that, we also know steroids often make the difference between surviving and thriving. They reduce inflammation fast, calm flares, and can prevent irreversible organ damage.

They can be lifesaving — but they can also be life-altering.

As I prepare for a total hip replacement (thank you, steroids), I can’t help but reflect on our complicated relationship. These pills gave me stability and time, but they also left a mark — quite literally — on my bones.

Steroids are powerful and effective, but they can quietly wreak havoc over time. Long-term use can lead to diabetes, osteoporosis, cataracts, and muscle weakness. This isn’t to scare anyone, but to remind us how important it is to understand what’s happening inside our bodies — and to protect ourselves wherever possible.

Protecting yourself

When I was diagnosed, my vasculitis-trained rheumatologist did something that made a huge difference. Alongside my steroid prescription, I was immediately started on:

• 1,000 mg of calcium
• 3,500 mcg of vitamin D

That simple step was to help protect my bones. I’ve taken those supplements faithfully ever since, treating them with the same importance as any other medication.

If you’re on steroids and haven’t discussed calcium and vitamin D with your doctor, please bring it up at your next appointment. These two simple additions can make a real difference in preventing bone loss and fractures.

I think often of a young woman I know — just 30 years old — who wasn’t given these supplements early on. Today, she’s prediabetic and has severe osteoporosis. She even broke four ribs in her sleep. I share that not to frighten anyone, but to emphasize how critical preventive care can be.

Hope on the horizon

The good news? Things are changing.

Researchers are finally asking important questions about what amount of steroids is actually needed to control vasculitis — and whether we can do it with far less. Two newer medications, Tavneos (avacopan) and Fasenra (benralizumab), have already shown promise in reducing or even replacing steroids for some patients.

Even if you’re not a candidate for these drugs right now, their existence gives all of us something invaluable: hope. It means researchers are paying attention, and companies are investing their time, energy, and resources into understanding our disease.

That’s progress — slow, steady, but real.

The takeaway

Steroids are often both our heroes and villains: lifesaving yet life-complicating. While we may not get to choose whether we need them, we can choose to be informed, proactive, and protective of our long-term health.

Ask your doctor about:

• Bone protection (such as calcium and vitamin D)
• Diabetes monitoring
• New treatment options that may help lower your steroid dose

Connect with others who understand this journey — because you’re not alone. If you have a moment, listen to the “Rare Candor” podcast episode titled “Whispers of Hope: Escaping the Prednisone Trap.”

And most of all, let’s keep celebrating every step forward in research. Every new study, every new medication, every small advance means one thing: Someone is listening. Someone cares. And the future for people with vasculitis is getting brighter.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.