Your AAV Medical Team — and Which Doctors You Should Have on Speed Dial

ANCA-associated vasculitis (AAV), a condition that causes inflammation in small to medium-sized blood vessels, can affect organs throughout your body. That means you will likely need more than one doctor to provide the care you need.

“Most patients with AAV require a multidisciplinary approach to care, which is largely determined by the specific manifestations of their disease,” says Kenneth J. Warrington, MD, director of the vasculitis clinic and chair emeritus and consultant of the division of rheumatology at the Mayo Clinic College of Medicine and Science in Rochester, Minnesota.

Knowing the roles and specialties of each member of your care team is essential to getting the right treatment and help when a new AAV symptom pops up.

Throughout your care, your rheumatologist will collaborate with other specialists. But that may change depending on where AAV is focused in your body, says Maushmi Savjani, MD, a rheumatologist at Harbor Health in Austin, Texas.

“For example, if the kidneys are heavily involved, nephrology may colead closely,” Dr. Savjani says. “If lung disease dominates, pulmonology may be deeply involved.”

Next to the rheumatologist, the three main “players” on your AAV care team will likely focus on your kidneys, lungs, and ear, nose, and throat issues.

Nephrologist

Nephrologists also are involved in diagnosis, prescribing treatment, and helping you understand AAV.

Pulmonologist

Otolaryngologist (ENT)

Otolaryngologists diagnose and treat diseases that affect the ear, nose, and throat, which is why they’re called ENT doctors.

If AAV affects other areas of your body, additional specialists may be drafted to help with diagnosis and treatment. It’s important to start this care soon after your diagnosis, Warrington says, so you can manage your condition effectively.

Neurologist

Ophthalmologist

Dermatologist

These skin issues may be indicative of a deeper health issue. Your dermatologist will work with you and your care team to pinpoint the cause and treatment.

Vascular Surgeon

Surgery to repair damaged blood vessels may be necessary to treat complications from AAV.

“While vascular surgery is not used to control the underlying inflammatory process, it may be required in certain cases where vascular damage has already occurred,” says Daniel Torrent, MD, MPH, Society for Vascular Surgery ambassador and vascular surgeon at Longstreet Clinic in Gainesville, Georgia.

In these cases, a vascular surgeon will repair damaged blood vessels once inflammation is under control, he says. Usually, however, surgery only occurs when AAV is more serious.

“Surgical intervention is typically reserved for organ- or limb-threatening complications, such as critical arterial stenosis, ischemia (low blood flow), aneurysm formation with risk of rupture, or thrombosis,” Dr. Torrent says.

With a full team of specialists providing your care, there’s no shortage of people to contact if you have questions. But sometimes it can take time to get through to your specialist, or you may just have a quick question about a new symptom.

Core utility players on your team may include:

• Specialized Nurses These are often the people you have on speed dial for quick questions or triage. Your rheumatologist or other primary specialist may have a nurse on call to answer questions that come up. Nurses can help coordinate your care, answer questions about symptoms and medication side effects, and connect you to your doctor or let you know if and when you need immediate care.

  [13]

• Pharmacist Managing the complex interactions of steroids, immunosuppressants, and other AAV medications is essential. Pharmacists can answer your questions about side effects as well as about how much medications cost and the difference between brand-name and generic drugs.

  [14]

   As with any member of your medical team, building a strong relationship with your pharmacist or pharmacy can help you navigate challenges with your care and medications.
• Primary Care Physician (PCP) Your PCP was likely your first point of contact when your symptoms began and made the referral to a specialist. Even if you’re seeing a number of specialists, your PCP usually retains a role to provide general care and answer questions about your symptoms, medications, or side effects.

As a patient, you’re often your own best advocate — and it may fall to you to keep all of your doctors on the same page. This means ensuring they’re communicating with one another and coordinating your care. It may seem daunting, but digital tools may make it easier.

“It’s important for patients to use shared patient portals and request copies of clinic notes to stay organized and bridge gaps between members of their care team,” Torrent says.

Dr. Savjani offers other tips, such as:

• Maintaining an Updated Medications List Note your dosage, start date, and who prescribed each medication. This can help your care team understand changes to your treatment plan and to avoid potential complications.
• Defining a Point Person Ask your care team who to speak with when your symptoms flare up. Get that answer in writing.
• Using a Single Recordkeeping System If this isn’t possible, bring important lab results or imaging summaries with you to appointments.
• Keeping Your Team Lead in the Loop After major doctors’ visits or hospitalizations, tell your lead doctor what changed, and ask for help informing the rest of your care team.
• Requesting a Shared AAV Treatment Plan This may include a schedule for tapering off medications such as steroids, a lab-monitoring schedule, and red-flag symptoms that are important to monitor.

Another way of coordinating care is to stay within the same medical system, when possible.

“Patients are generally advised to seek evaluation and treatment at medical centers with specialized expertise in vasculitis care,” Warrington says. “Many of these centers have dedicated vasculitis clinics that focus on providing coordinated, multidisciplinary care for individuals with this condition.”

• Because ANCA-associated vasculitis (AAV) can affect organs throughout your body, your care team may include numerous specialists to treat needs in specific areas, from your kidneys to your nervous system.
• A rheumatologist often serves as the primary coordinator of the healthcare team, depending on your AAV type, and takes the lead on your treatment in collaboration with other specialists.
• When you have quick questions or concerns, specialty nurses, pharmacists, and your primary care physician can help when other specialists are not available.
• It may fall to you to ensure that your doctors are communicating with one another. Keep an updated list of your medications and care plan to ensure everyone is on the same page.