Here, vasculitis experts share five simple lifestyle measures that may help improve your quality of life with AAV.
1. Reduce Your Risk of Infections
Getting sick is something we all try to avoid, but if you have AAV, it’s especially important to reduce your risk of illness, says Jason Springer, MD, codirector of the Vanderbilt Vasculitis Center and an associate professor of rheumatology and immunology at Vanderbilt University Medical Center in Nashville, Tennessee.
“AAV can damage certain barriers to infection, such as the lining of the airways and the skin, and this damage can expose underlying tissue to infections,” says Dr. Springer. “In addition, most of the medications used to treat ANCA-associated vasculitis are immunosuppressive, which means they can also increase the risk of infection.”
2. Choose Anti-Inflammatory and Bone-Boosting Foods
Healthy eating can also help with some of the side effects of the medications. “Steroids (or glucocorticoids) commonly used to treat ANCA-associated vasculitis tend to stimulate the appetite, leading to weight gain,” says Springer. They can also affect bone health, which is why he recommends a diet rich in calcium and vitamin D, both known to safeguard bones.
Limiting processed foods, which are typically high in sodium and sugar, is also important, says Lindsay Lally, MD, a rheumatologist at the Hospital for Special Surgery in New York City. “And for those who have kidney disease as part of their AAV, special diets limiting sodium and potassium might be recommended by the nephrologist.”
3. Stay Active With Simple Movements
Because inflammation and restricted blood flow are common concerns with AAV, experts strongly suggest adding some exercise into your daily routine. In addition to helping with weight control and promoting blood flow, physical activity may also help reduce stress, says Springer.
Even more benefits of moving: “Exercise can help with fatigue and minimize the joint pain of AAV,” says Dr. Lally. That said, it’s important to listen to your body and not push yourself, she adds. Talk to your doctor, consider working with a physical therapist with experience treating chronic autoimmune disorders, such as AAV, and start slowly. “Simple movements, such as focused breathing or chair exercises, can be beneficial,” says Lally.
Other low-impact workout ideas include stretching, swimming, walking, yoga, and using light weights, she says.
4. Practice Pacing and Stress Management
Fatigue is another common symptom of AAV. But as with many chronic illnesses, says Lally, “There’s a learning curve to figuring out how to best pace yourself while still remaining active.” Your best bet? Pay attention to your body’s cues.
“There is some benefit to pushing a little bit while also understanding the benefits of moderation and not overdoing it,” she adds. Taking breaks throughout the day is a good first step. Also, be sure to prioritize sleep hygiene, which means tucking in and getting up at the same times each day and sleeping in a cool, dark room that’s free of electronics.
And don’t forget that dealing with a rare disease can affect your emotional health, too. The stress of the symptoms can take a toll, which is why monitoring your mood is critical with AAV. “Having an outlet for stress — whether meditation, talking to a friend, listening to music, or watching a silly TV show — is important. We know that stress is inevitable, but not having a channel for it can potentially be associated with disease flares,” says Lally.
5. Seek Out the Support You Need
“It can feel very isolating and overwhelming at times, especially when it’s a new diagnosis, so try to remember that you’re not alone,” says Springer. Having people you can lean on can make a real difference when you’re living with a rare disease, such as AAV, he says. “Don’t be afraid to seek out the support you need, whether from the community around you, such as family, friends or church, or through special groups, where you can talk with others who have had similar experiences.”
The Takeaway
- Living with AAV can be better managed by combining prescribed medical treatment with lifestyle changes, such as improving diet, exercise, sleep, and stress management.
- Research shows that learning more about AAV and practicing healthy habits — for example, eating anti-inflammatory foods, exercising regularly, and taking steps to reduce your risk of infections — can improve symptom control and your quality of life.
- With the right information, self-care strategies, and support from healthcare providers and community networks, you can take meaningful steps to support AAV, recovery, and your overall well-being.