Living with Takayasu arteritis awareness

Overview

Takayasu arteritis (TAK) is a rare condition that causes swelling (inflammation) of the large arteries, especially the aorta and its main branches. Over time, this can narrow, block, or weaken the blood vessels, which reduces blood flow to parts of the body.

No, Takayasu arteritis is rare. It is estimated to affect about 1 to 3 people per million each year in some regions, although exact numbers vary around the world.

It most often affects young women between the ages of 15 and 40, but it can also occur in men, children, and older adults. It is more common in people from Asian, Middle Eastern, or African backgrounds.

Symptoms

Common symptoms

• Fatigue and a general feeling of being unwell
• Pain, cramping, or coolness in the arms or legs, especially with activity
• Dizziness, lightheadedness, or fainting
• Chest pain or shortness of breath
• High blood pressure or a difference in blood pressure between the arms
• Headaches, sometimes with vision changes
• A whooshing sound heard by the doctor over an artery (called a bruit)

Symptoms in children

• Fever and unexplained weight loss
• Joint pain and abdominal pain
• High blood pressure, which may be found during a check-up
• Poor growth or delayed development

Symptoms in older adults

• Symptoms can be similar to those in younger adults, but may be mistaken for normal aging, heart disease, or stroke.
• Weak or absent pulses in the arms and legs may be noticed.
• Blood pressure differences between arms are a common clue.

Causes

Main causes

• The exact cause is unknown. It is likely an autoimmune condition, where the body's immune system mistakenly attacks the walls of the large arteries.
• Some genetic factors may increase a person's risk, but the disease is not directly inherited.

Risk factors

• Being a young woman (the condition is much more common in women)
• Having an Asian, Middle Eastern, or African ethnic background
• Having another autoimmune disease, such as lupus or rheumatoid arthritis

When to see a doctor

See a doctor urgently if:

• If you have any of the emergency symptoms listed above, call your local emergency number right away.
• If you notice a sudden drop in blood pressure, a very weak pulse, or symptoms of a stroke, seek emergency care immediately.

Book a routine appointment if:

• Make an appointment if you have persistent fatigue, headaches, or arm/leg pain that does not go away.
• See your doctor if you have high blood pressure that is hard to control or a noticeable difference in blood pressure between your arms.

Diagnosis

Doctors use a combination of your medical history, a physical exam, blood tests, and imaging scans. There is no single test for Takayasu arteritis, so a diagnosis is based on the whole picture.

Tests that may be done

• Blood tests to check for inflammation (such as ESR and CRP) and to rule out other conditions
• Magnetic resonance imaging (MRI) or CT scan of the chest and abdomen to look at the arteries
• Ultrasound of the arteries in the neck, arms, or legs
• Angiography, which uses special dye to see the inside of blood vessels

What to expect at your appointment

Your doctor may refer you to a rheumatologist (a specialist in inflammatory diseases) or a vascular specialist. Be prepared to describe all your symptoms and their timing. Imaging tests may need to be repeated over time to monitor inflammation and blood flow.

Treatment

Treatment aims to reduce inflammation, manage blood pressure, and prevent blood vessel damage. It often involves a combination of medications and regular monitoring. Working closely with your healthcare team is essential.

Self-care at home

• Take all prescribed medications exactly as directed, even if you feel well.
• Monitor your blood pressure at home and keep a log to share with your doctor.
• Attend all follow-up appointments, even during remission
• Learn to recognise early signs of a flare-up, such as fatigue, fever, or new pain.

Medical treatments

Doctors usually prescribe medicines to control inflammation and calm the immune system, such as corticosteroids and immunosuppressants. They may also prescribe medications to lower blood pressure or reduce the risk of blood clots. The exact plan is tailored to each individual and should be discussed with your healthcare provider.

When is surgery considered?

If an artery becomes severely narrowed or blocked, a procedure such as angioplasty (widening the artery with a small balloon) or bypass surgery (creating a new route for blood flow) may be considered. Surgery is not the first choice, but it can be helpful when blood flow to vital organs is at risk.

Living with this condition

Living with Takayasu arteritis can be unpredictable. Some days you may feel fine, and other days you may feel very tired. Pacing yourself, planning rest breaks, and being kind to yourself are important parts of daily life.

Lifestyle tips

• Quit smoking, as smoking narrows blood vessels and worsens damage.
• Keep stress levels low with relaxation techniques like deep breathing, meditation, or gentle yoga.
• Stay active within your limits, and avoid extreme cold, which can constrict blood vessels.
• Protect your skin and avoid injuries to your arms and legs.

Diet and exercise

A heart-healthy diet rich in fruits, vegetables, whole grains, and low salt is recommended. Aim for moderate exercise such as walking, swimming, or cycling, but stop if you feel chest pain, dizziness, or unusual shortness of breath. Always check with your doctor before starting a new exercise plan.

Mental health and emotional wellbeing

Living with a chronic illness can bring anxiety, sadness, or frustration. These feelings are normal. Talking to a counsellor, joining a support group, or sharing your experience with trusted loved ones can help. If you feel overwhelmed, please reach out to your healthcare team for mental health support.

Prevention

Because the exact cause is unknown, there is no known way to prevent Takayasu arteritis. However, early diagnosis and treatment can prevent or slow down damage to your arteries.

Vaccines

Staying up to date on recommended vaccines, such as the flu and COVID-19 vaccines, is important because infections can trigger flare-ups. Talk to your doctor about which vaccines are safe for you.

Screening programmes

Routine screening is not recommended for people without symptoms, even if a family member has vasculitis. Tests are only done when there is a specific medical reason.

Complications

If left untreated

• High blood pressure leading to heart or kidney damage
• Stroke or heart attack from a blocked artery
• Aortic aneurysm (a bulging and weakening of the aorta wall)
• Kidney damage due to narrowed arteries supplying the kidneys
• Vision loss from reduced blood flow to the eyes

Long-term outlook

With proper treatment and regular care, many people with Takayasu arteritis live active, fulfilling lives. The course of the disease varies from person to person, but periods of remission (no active inflammation) are possible. Some people may need long-term medication and monitoring, but the outlook is hopeful, especially with early diagnosis and a dedicated care team.

Find support

International organisations

• Vasculitis Foundation ↗
• Vasculitis UK ↗

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