How to Exercise With ANCA-Associated Vasculitis

Exercise plans are not a one-size-fits-all, though. Talk to your care team and a physical therapist to create a personalized plan that works best for you.

Types of Exercise for AAV

Exercise plans for people with AAV typically home in on low to moderate activities, with common goals in mind, says Lily Johnston, MD, MPH, a vascular surgeon at Scripps Memorial Hospital and the associate medical director at Nexus HealthSpan in Mission Viejo, California.

“AAV-specific exercise research is limited, but data from AAV studies and related autoimmune and kidney conditions point consistently in the same direction,” she says. “Three goals matter most: easing fatigue, which affects about 75 percent of patients; preserving the muscle and bone that steroids erode; and protecting the heart and kidneys.”

Aerobic Exercise

“Walking is the best-studied, but swimming and cycling are gentler on joints and feet — useful for patients with neuropathy or joint involvement,” Dr. Johnston says.

Resistance Training

Strength training can help your lower body, in particular, Johnston says.

“Most AAV patients have measurably weaker leg muscles than peers, and lower leg strength tracks with worse physical quality of life,” she says. “People should try for two or three sessions a week of bodyweight squats, leg presses, or resistance-band work. Steroid [treatment] accelerates bone and muscle loss, so resistance and weight-bearing exercise serve a protective function.”

Controlled resistance exercises, in which you work with weights, bands, or a similar external force, are also important to improve muscle mass and joint stability with minimal stress on the nervous system, says Ron Miller, DPT, the owner of Pursuit Physical Therapy in Orlando, Florida.

“The ‘less is more’ approach is important, as many patients with autoimmune conditions respond better to consistency rather than intensity,” he says. “Shorter, repeatable sessions typically still yield good results compared to the ‘all-or-nothing’ approach to exercise. Instead, I want exercise that leaves the body feeling better an hour afterward than it did before, rather than (feeling) exhausted for the next two days.”

Balance and Flexibility

“This is particularly useful for patients on long-term prednisone or with peripheral neuropathy,” Johnston says.

How to Select and Start a Routine

There is no one specific fitness routine for people living with AAV, and fitness levels and limitations can vary considerably. What you need to select and start a routine largely boils down to individual preference, health status, and physical ability, after conversations with your healthcare team.

Get Started

Take the following steps before you start a new exercise routine.

• Talk to your doctor. Before starting any fitness program, make sure that your doctor gives you clearance. Your doctor can help you determine what is safe and feasible for you, especially considering your current AAV treatment.
• Consider physical therapy. Johnston points out that a physical therapy referral is appropriate for some people. You may need it, for example, if you have significant steroid myopathy, or muscle weakness caused by high doses of corticosteroid therapy. If you are deconditioned, or have a decline in physical ability after prolonged periods of inactivity, your physical therapist can also work out a slower starting program. “A physical therapist assesses movement quality and compensatory patterns, rather than focusing solely on fitness,” Miller says. “This includes considerations of joint protection and the body’s capacity to tolerate and recover from load.”
• Work on a plan. Your care team can help you identify the “minimum effective dose” of exercise required to build capacity without overtraining, Miller says. “This approach often plays a key role in determining long-term outcomes in complex autoimmune conditions, where appropriate pacing can significantly influence recovery trajectories,” he says.

Choose Your Workout

After you get medical clearance, the next step is to determine your personal fitness goals. For example, is your goal to improve your overall health or are you looking to lose weight? Do you want to become more flexible, get stronger, and build more stamina? Or is it a combination of these?

“The activity a patient will actually maintain wins,” Johnston says. “Patient preference should drive the choice.”

Safety can also be a concern in your workout choice, Johnston says, especially if you have complications of AAV or other conditions.

“For immunosuppressed patients, smaller groups or outdoor sessions are safer than crowded indoor classes,” she says.

When to Push, When to Stop

There may be times when you’re not feeling well or are just tired and want to skip your workout. Rest is essential, and it is important to balance rest and exercise.

“The threshold for modifying a workout should be low,” Johnston says. “But the threshold for skipping entirely should be high — except when specific warning signs are present.”

When you’re not feeling motivated, Johnston recommends modifying your workout rather than missing it. Reduce the duration or intensity or switch to something else. For example, instead of a walk, do a stretching routine or a chair-based exercise.

Consider the “two-hour pain” rule, Johnston says.

“Pain that resolves within two hours of finishing exercise is considered acceptable post-exercise soreness,” she says. “Pain persisting beyond two hours indicates the session was too intense, so you should modify your workout next time.”

If you have a flare-up, avoid high-impact exercise, Miller says.

“It all too often sets people back rather than helping them manage their condition,” he says. “Swollen, stiff, or unusually tender joints are not well suited for that kind of stress.”

Miller is also cautious about repeated heavy lifting, cardio sessions lasting two to three hours, or any other form of “push through it” workout.

“When you feel fatigued, your joints are warm, or you have flu-like symptoms the next day, your body is telling you that it needs rest, not additional stress,” he says. “As such, on more difficult days, gentle mobility work, walking, or breath-focused movement is often more beneficial than pushing through a heavy workout.”

Johnston adds that you should stop your workout and call the doctor if you have symptoms that include:

• Tea- or cola-colored urine, or a notable increase in foamy urine
• Coughing up blood
• Shortness of breath, especially while resting
• Skin ulcers or bruising
• Numbness or tingling
• Chest pain, dizziness, or palpitations during exercise
• Active infection
• Fever, especially if you are taking medication

“Resume gradually once you’ve recovered,” she says.

The Takeaway

• When you have ANCA-associated vasculitis (AAV), exercise can help combat fatigue, preserve muscles and bones, and boost your mental health.
• Low- to moderate-intensity activities such as walking, swimming, resistance training, and flexibility exercises can improve stamina and strength when tailored to your individual capabilities.
• Work with your healthcare team to create a personalized plan that you can stick with consistently.