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Diseases > Takayasu Arteritis

Takayasu’s arteritis (TAK) is a condition that involves inflammation of the lining of large blood vessels called arteries. This inflammation can seriously damage important arteries including those that supply blood to the heart and lungs. That’s why it’s important to treat TAK quickly and aggressively. If left untreated it can lead to serious complications including loss of vision and stroke.

What is Takayasu’s arteritis?

Takayasu’s arteritis belongs to a family of arthritic diseases called vasculitis. It was first discovered by a Japanese doctor named Mikito Takayasu. The word vasculitis means inflammation of blood vessels. People with TAK have inflammation in the lining of blood vessels called arteries. Large arteries are affected, including vessels that supply the lungs and the heart (such as the aorta and its branches). That’s why it is sometimes called “aortic arch syndrome.”

What causes Takayasu’s arteritis?

We don’t fully understand what causes TAK but it’s thought to be an autoimmune disease. This means that for some reason, the immune system goes awry and starts to attack tissues in the body. In Takayasu arteritis the target of the attack is the large blood vessels.

Who gets Takayasu’s arteritis?

Takayasu’s arteritits is a disease that mostly affects young people. It is eight times more common in young women than in young men. This condition occurs primarily between the ages of 10 and 40 years. It is slightly more common in people of Asian or African descent.

How is Takayasu’s arteritis diagnosed?

Takayasu’s arteritis is best diagnosed by a rheumatologist. A rheumatologist is a specialist in arthritis and autoimmune diseases. The rheumatologist will take a complete history and perform a thorough physical examination. This is usually followed by blood tests and other investigations.

What tests are done to diagnose Takayasu’s arteritis?

The “gold standard” to diagnose TAK is an angiogram. During this procedure a dye is injected and pumped through the arteries and then pictures are taken. This can be done by a regular X-ray. It could also be done by computed tomography (CT) or by magnetic resonance (MR) angiograms. Magnetic resonance imaging is more common because it requires a lower load of dye and shows the vessel wall in greater detail. Angiograms show what’s going on inside the arteries and help detect TAK as early as possible.

There are several other tests that can help make a diagnosis of TAK:

  • Complete Blood Count (CBC) – will measure hemoglobin levels to determine if anemia is present, a sign of inflammation, as well as red and white blood cells and platelets
  • Erythrocyte Sedimentation Rate (ESR)
  • C-Reactive Protein (CRP)
  • Creatinine to measure kidney function

What are the signs and symptoms of Takayasu’s arteritis?

The first signs and symptoms of TAK are often hard to pinpoint. People with the condition usually start feeling fatigued and generally unwell. Oftentimes it feels like having the flu: fever, headache, and muscles may feel sore and achy. Loss of appetite and unintended weight loss can also occur. Patients often think that they have a viral illness like a cold.
As the condition progresses the blood vessels become inflamed and tender. This is especially common over the carotid arteries – the blood vessels that supply the brain – which are close to the surface of the skin. If the heart vessels are involved, patients may feel chest pain. Eventually, inflammation can cause swelling of the vessel walls and blockage of the artery.

Depending on which arteries are affected the symptoms might be slightly different. If the vertebral arteries (vessels that supply the head) are affected, dizziness and visual problems might occur. If arteries to the arms or legs are affected then a person could lose the pulse in their limb, feel weakness or notice a colour change. If the aorta is affected, the heart can have trouble properly pumping blood. If the carotid arteries are affected, a stroke or seizure might occur. If arteries near the kidney are affected, high blood pressure is possible.

Work and Takayasu’s arteritis

Since most people with TAK are young, it can have a serious effect on work and/or school. It is important to diagnose and treat TAK as quickly as possible to minimize the negative impact the disease could have on your career or education.

Travel and Takayasu’s arteritis

Although traveling is still possible when you have TAK, don’t forget that it’s a very serious illness. Before leaving, make sure you have proper medical insurance. It is best to be organized prior to your trip to ensure a smooth, comfortable, and enjoyable time. See our travel check list.

Sex and Takayasu’s arteritis

Although TAK does not affect sexual function, it may cause a slight decrease in sex drive. Take comfort knowing that sex and intimacy can be maintained in people with TAK … it can even draw partners closer together, especially through improved communication.

Pregnancy and Takayasu’s arteritis

Takayasu’s arteritis must be very well controlled before pregnancy should be considered. Both the disease itself as well as many of the drugs that are taken to help control TAK can be hard on both fertility and on the fetus.

Women with TAK can breastfeed their infants, as long as they are not taking medications that can make their way into breast milk and affect the infant. Check with your rheumatologist before breastfeeding.

What can I do about Takayasu’s arteritis?

Being diagnosed with a disease like TAK can be a little scary. The first thing is don’t panic. Take a deep breath. Although you might have been diagnosed with TAK, you are not alone. Luckily, there are effective treatments available. Even if they don’t cure TAK, they can make living with the condition much more comfortable.

If you have TAK or think you may have it, your family doctor should immediately refer you to a rheumatologist. A rheumatologist is a specialist doctor who is an expert in treating arthritis and other types of inflammatory diseases. This type of doctor is in the best position to help you diagnose and manage your condition.

Here are some recommendations on what you should do:

  1. Learn as much as you can about this disease. Education is very powerful and we’ve aimed to develop this RheumInfo website to be accessible and easy to understand for everyday people living with TAK and other forms of inflammatory arthritis
  2. Attend your rheumatologist appointments regularly
  3. Get your blood tests done as suggested by your rheumatologist
  4. Learn about the medications used to treat TAK. The RheumInfo website has many interactive and valuable tools to help you understand these medications and their impact on your disease

Treatment of Takayasu’s arteritis

People with TAK can lead active and productive lives with the right kinds of treatment. Two key points are essential to remember: treat TAK early and treat it aggressively. Don’t wait. TAK is a medical emergency that can result in serious consequences, including blindness and stroke.

Why is it important to treat Takayasu’s arteritis early?

If you treat TAK early you are more likely to achieve better outcomes and prevent loss of vision. Even a few months can make a difference. Here’s an analogy. Imagine you are sitting in your living room enjoying a nice cup of coffee. You look over to the kitchen and see a fire burning on the stove. What do you think you’ll do? One option is to just sit there and wait until the fire gets worse and spreads to the walls or the ceiling. The second option is to grab the phone, dial the fire department, and grab the fire extinguisher.
You can think of TAK like a fire in your arteries. You want to get that fire put out as quickly as possible so it doesn’t damage your body. We want to stop TAK before it damages your arteries.

Why is it important to treat Takayasu’s arteritis aggressively?

Using the same fire analogy, we’ve decided to call in the fire department. Now we need to make sure we have the right tools to put out the fire. We don’t want a bucket and water. We want a fire truck with a big hose. We might even want more than one fire truck. The faster we can get that fire out the better things will be in the long run.

Medications for Takayasu’s arteritis

Medications for TAK are aimed at controlling the inflammation that can eventually damage the arteries. In some people, once inflammation is brought under control the disease can go into remission. When that happens, doses of medicines can sometimes be tapered down and eventually stopped. In other people, TAK behaves more like a chronic (long-term) disease that must be controlled with small doses of medicine on an ongoing basis.

For more information about specific medications used to treat TAK, refer to the “pictopamphlets” in the Medications section of this website.

Corticosteroid medications like prednisone are the primary treatment for TAK. They can help control inflammation and may also prevent long-term damage in some people. Prednisone is usually started at a high dose to quickly bring inflammation under control. Most people start to feel better within a few days. Once symptoms have improved and markers of inflammation have come back to normal, the dose can start to be tapered down. In some patients small doses of prednisone might be required on an ongoing basis to keep the disease under control.

Other medications are available for treating TAK. Methotrexate or azathioprine (Imuran) are sometimes used to help lower the dose of prednisone required to control inflammation. In severe disease cyclophosphamide (Cytoxan) is used to control inflammation. Cyclophosphamide carries a few more side effects including an effect on fertility in both men and women. If cyclophosphamide is contemplated then family planning must be discussed. A new medication called tocilizumab (Actemra) has also been used in some cases but more studies are needed before it is widely used in people with TAK.

If arteries become severely narrowed then surgery may be required to improve the flow of blood. There are different surgeries that can be performed including bypass, angioplasty, and stenting.

Exercises for Takayasu’s arteritis

Exercise is important to overall health. Regular physical activity can also help you deal with fatigue. The level and amount of exercise you can do depends on the extent and activity of your TAK. A good rule of thumb is to aim for 20-30 minutes of physical activity every day.

Aerobic exercise such as walking, swimming or bicycling works your heart and increases your overall fitness. It is also an important part of keeping a healthy weight. This is especially important in people who take prednisone over long periods of time, since it can lead to weight gain. A trained arthritis physiotherapist can help design an exercise program tailored to you and your needs.

Below are some useful articles on exercising with arthritis – many of the tips can also be applied to people with TAK:

  • Exercise and Arthritis: An article by arthritis physiotherapist, Marlene Thompson
  • Exercising in a Flare: Another excellent article written by Marlene Thompson on how to cope with flares through your exercise routine.

Natural or Home Remedies for Takayasu’s arteritis

There are no known natural remedies or complementary therapies that have been proven to help TAK in any significant way. This is a very serious illness that can lead to vision loss or stroke and you should therefore seek treatment from your rheumatologist or physician right away. However if you do choose to use natural or home remedies in addition to what your rheumatologist recommends, it’s important to check to make sure that nothing interacts with your medication.

Diet for Takayasu’s arteritis

Questions about diet and disease are very common. We all want to know what we can do to help ourselves. Can we change our diet to improve our immune system and help our TAK? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.

Unfortunately, there is no diet that has been proven to significantly alter the course of TAK or other types of inflammatory arthritis. Following the basics of healthy eating can help improve health and well-being in everyone, including those with TAK. It can also help prevent or manage weight gain in people who take prednisone over long periods of time.

Alcohol and Takayasu’s arteritis

Many of us like to share a glass of wine, a beer, or a spirit from time to time. Unfortunately, due to the nature of TAK, some people may turn to alcohol to help cope with the pain and distress. Alcoholic beverages are not an effective treatment for TAK. They can also interact with some medications so extra care should be taken.

Smoking and Takayasu’s arteritis

Cigarette smoking, whether you have TAK or not, has no positive effects on any aspect of your health. Smoking can also increase the risk of stroke. So if you are a smoker with TAK, quitting could be one of the best things you can do to improve your overall health.

Concluding thoughts

Takayasu’s arteritis is a medical emergency. The inflammation of TAK can seriously damage important arteries supplying blood to the heart and lungs. If left untreated it can lead to serious complications including loss of vision and stroke. There are effective medications that can control TAK so don’t wait – treat it early and aggressively before permanent damage is done.