How to Manage Steroid Side Effects During AAV Treatment

“They rapidly control inflammation to help patients feel better and can minimize organ damage,” Dr. Dua says, “but there are a lot of concerning side effects, both with high and low doses as well as short- and long-term exposure.”

Getting to know these potential side effects and ways to address them can help you work toward getting AAV into remission.

• Increased appetite from steroids, which may cause you to eat more and consume more calories
• Water retention

“Moon face is reversible in most patients once steroids are reduced or stopped, but this can take a long period of time, sometimes up to months before symptoms improve,” Dua says. “The best way to try and prevent moon face is to minimize steroid exposure by using the lowest dose possible for the shortest time possible. This can also be achieved with the use of steroid-sparing medications early in the disease course.”

Ways to manage weight gain while using corticosteroids include the following tactics:

• Using other medications that reduce reliance on steroids, such as avacopan (Tavneos)

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• Limiting processed foods, sugar, and sodium, according to Lindsay S. Lally, MD, an assistant attending physician in the division of rheumatology at the Hospital for Special Surgery in New York City
• Eating smaller, more frequent meals

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• Staying active to burn excess calories

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Corticosteroids are not stimulants. But they can make you feel more alert and jittery, which can make it harder to fall asleep. You may try countering this by adjusting your medication time.

“Take steroids in the morning, if prescribed once daily, to reduce insomnia,” says Maushmi Savjani, MD, a rheumatologist at Harbor Health in Austin, Texas.

• Having a comfortable, dark, and quiet sleep environment
• Following a bedtime routine that helps you fall asleep
• Getting seven to nine hours of sleep
• Going to bed and waking up at the same time every day
• Exercising during the day, avoiding caffeine after 12 p.m., and practicing other techniques that can help you sleep at night

• Nausea
• Vomiting
• Stomachache
• Diarrhea

• Gastritis
• Ulcers
• Gastrointestinal bleeds

“Strategies typically involve supplementation with calcium and vitamin D,” says Kenneth J. Warrington, MD, the director of the vasculitis clinic, a chair emeritus, and a consultant for the division of rheumatology at Mayo Clinic College of Medicine and Science in Minnesota. “In some cases, bisphosphonates or other osteoporosis medications may be considered to further support bone health and decrease the likelihood of fractures.”

• Weight-bearing exercise such as walking, running, and dancing
• Dietary changes
• Limiting alcohol and smoking
• Reducing fall risks at home by removing rugs and installing lights, for example

As immunosuppressants, steroids can increase your risk of infection. This is more common in higher doses and long-term therapies, Dr. Savjani says.

“Patients should call their doctor if they are running a fever or develop new respiratory symptoms,” she says.

• Sleep seven to nine hours each night.
• Wash your hands regularly.
• Maintain a balanced diet.
• Drink enough water.
• Quit smoking.
• Get an annual flu shot, which can also protect you against certain types of pneumonia, Dr. Warrington says

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Corticosteroid use can increase your risk of developing and worsening cataracts and glaucoma.

Although cataract risk is much greater when taking high doses for more than a year, you may develop cataracts while taking low doses.

Get regular eye exams to screen for cataracts and glaucoma, especially if you are on a long-term steroid treatment plan.

If you notice these symptoms, talk to your care team about potential changes to your steroid dosage or other treatment to address this side effect.

Although AAV is a chronic condition with no cure, it’s crucial to work with your care team to treat it and any side effects of corticosteroid treatment that you may experience.

“It’s very important to have open communication about side effects you are experiencing,” Dua says. “If we aren’t aware of your concerns and issues around the medications, we can’t appropriately address them or take steps to try and help minimize the side effects and toxicities you are experiencing.”

This starts before treatment begins, Savjani says. In addition to discussing corticosteroids’ risks as you develop a treatment plan, consider building a prevention plan for side effects, she says.

Steroids’ side effects during AAV treatment can be troubling, but you should never stop them abruptly, or cold turkey. Instead, work with your care team on a way to taper your dosage, especially if you have taken steroids for more than a few weeks.

“If you have been on steroids chronically, typically defined as more than three months, your body’s own cortisol system, the adrenal glands, can shut off,” Dr. Lally says. “If you stop the steroids too abruptly without tapering, which allows for the adrenal glands to start producing cortisol again, there can be what’s known as an adrenal crisis.”

• Severe fatigue
• Aching and joint pain
• Lightheadedness
• Loss of appetite
• Nausea
• Weakness

Medications such as avacopan could help you taper off steroids, Warrington says. If you have severe granulomatosis with polyangiitis or microscopic polyangiitis, two types of AAV, you also may be prescribed medications such as rituximab (Rituxan) or cyclophosphamide (Cytoxan) alongside steroids to help get you closer to remission, Savjani says.

• Corticosteroids can be a powerful, quick-acting treatment for ANCA-associated vasculitis, but it is important to know their side effects and how to address them as you try to get your condition into remission.
• Lifestyle and diet changes may help address side effects such as gaining weight, having trouble falling asleep, and experiencing gastrointestinal issues, while dosage adjustments and additional medication may be needed to tackle other symptoms.
• If you already have high blood sugar, an immunodeficiency, or eye issues such as glaucoma, ask your doctor if you can take corticosteroids without making your condition worse.
• In addition to addressing steroids’ risks before treatment for AAV, talk to your doctor about a treatment plan for side effects and what tapering off steroids might look like.