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.”
This can be a life-threatening condition, Lally says. In addition to your AAV symptoms returning, you may experience withdrawal symptoms:
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- Severe fatigue
- Aching and joint pain
- Lightheadedness
- Loss of appetite
- Nausea
- Weakness
Your care team can help you determine how long you will need to taper off steroid therapy, based on your condition. Let your doctor know immediately if you develop symptoms while steroids are tapered, which may mean a slower taper is required.
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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.
