Vasculitis
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Vasculitis

Vasculitis Living With Vasculitis

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After you are diagnosed with vasculitis, it is important to follow your treatment plan. Your provider may recommend additional follow-up care and medicines to avoid problems.

If vasculitis responds to treatment, it may go into remission.

Receive routine follow-up care

  • Talk to your provider about any new symptoms and other changes in your health, including side effects of your medicines.
  • Your provider will monitor you regularly to check for side effects from medicines used to treat vasculitis, such as corticosteroids.
  • If you had Kawasaki disease as a child, you will need follow-up heart testing throughout your life.

Monitor your condition

To monitor your condition, your provider may recommend some regular monitoring tests or procedures.

  • Blood tests look for abnormal levels of certain blood cells and antibodies.
  • Cardiac magnetic resonance imaging (MRI) looks for heart and vascular problems caused by vasculitis.
  • A chest X-ray looks for any problems in the lungs, heart, and large blood vessels, such as an aortic aneurysm.
  • Echocardiography (echo) or electrocardiography (EKG) both look for heart problems caused by vasculitis.
  • Myocardial perfusion imaging measures blood supply to your heart. It can also be used to look for heart problems caused by vasculitis.
  • A PET scan checks for aneurysms or heart problems caused by vasculitis.

Plan for a healthy pregnancy

Most women who have vasculitis have no problems during pregnancy. However, vasculitis can raise the risk to mother and baby.

  • If you had Kawasaki disease or another type of vasculitis as a child, tell your provider that you are planning to become pregnant. They will want to monitor you for heart problems during pregnancy.
  • Some medicines given to people who have vasculitis can be dangerous to a developing baby; be sure your provider knows what you are taking. Medicines may need to be adjusted during pregnancy. Do not stop taking medicine without first talking with your provider.
  • Vasculitis raises your risk for high blood pressure during pregnancy. Your blood pressure should be monitored closely.

How can I prevent vasculitis flares?

After vasculitis is treated and goes into remission, you may have flares, which are repeat occurrences or worsening of symptoms. You may have different symptoms than when you first had vasculitis. Taking medicines and adopting healthy lifestyle changes to treat other health conditions you have, such as high blood pressure or cholesterol, can help prevent flare-ups.

Part of the goal of vasculitis treatment is avoiding flares.

  • Flares may be treated with some of the same medicines used for your initial treatment, including corticosteroids.
  • If your vasculitis goes into remission, your provider may carefully stop your medicines. However, you will still need to be monitored for flares.

Learn the warning signs of serious complications and have a plan

An aneurysm can lead to a more serious problem like or a dissection or rupture, which is a tear in the blood vessel wall. Vasculitis also can lead to other serious heart and blood vessel problems, such as heart attack or stroke.

If you think that you are or someone else is having symptoms of one of these conditions, call 9-1-1 right away. Every minute matters.

Aneurysm rupture or dissection

Symptoms of a dissection or rupture may include:

  • Light-headedness
  • Paleness
  • Rapid heart rate
  • Sudden, severe pain in your stomach area, chest, or back, which can travel upward or downward

Heart attack

Signs of heart attack include mild or severe chest pain or discomfort in the center of the chest or upper stomach area that lasts for more than a few minutes or goes away and comes back. It can feel like pressure, squeezing, fullness, heartburn, or indigestion. There may also be pain down the left arm. Women may also have chest pain and pain down the left arm, but they are more likely to have symptoms such as shortness of breath, nausea, vomiting, unusual tiredness, and pain in the back, shoulders, or jaw.

Learn about the symptoms of a heart attack.

Stroke

If you think someone may be having a stroke or transient ischemic attack (TIA), act F.A.S.T. and do the following simple test.

F—Face: Ask the person to smile. Does one side of the face droop?

A—Arms: Ask the person to raise both arms. Does one arm drift downward?

S—Speech: Ask the person to repeat a simple phrase. Is his or her speech slurred or strange?

T—Time: If you observe any of these signs, call 9-1-1 immediately. Early treatment is essential.

Learn about the symptoms of a stroke.

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