Vasculitis - Living With - Living With

While you are being treated for vasculitis, you will need to see your doctor regularly.

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

Return to Treatment to review possible treatment options for vasculitis.

To monitor your condition, your doctor may recommend the following tests and procedures.

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

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 doctor if you are planning to become pregnant, as your doctor will want to monitor you for heart problems during pregnancy.
• Some medicines given to people who have vasculitis are dangerous to the developing baby; be sure your doctor knows what you are taking. Medicines may need to be adjusted during pregnancy. Do not stop taking medicine without first talking with your doctor.
• Vasculitis raises your risk for high blood pressure during pregnancy. Your doctor will want to monitor your blood pressure closely.

After vasculitis is treated and goes into remission, you may have flares, which are a repeat occurrence of signs and symptoms. You may have different symptoms than when you first had vasculitis.

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 doctor may carefully stop your medicines. However, your doctor will still need to monitor you for flares.

To help you prevent or treat some of the complications of vasculitis, your doctor may recommend medicines, healthy lifestyle changes, or procedures.

Medicines may include:

• Anticlotting medicines to treat blood clots or prevent blood clots from forming. You may need them if you have an aneurysm.
• Beta blockers to lower blood pressure. You may need them if you have an aneurysm.
• Statins to control or lower high blood cholesterol levels.

Healthy lifestyle changes include:

• Adopting a heart-healthy lifestyle.
• Avoiding illegal drugs, including cocaine.
• Quitting smoking and tobacco. Visit Smoking and Your Heart and the National Heart, Lung, and Blood Institute’s Your Guide to a Healthy Heart. Although these resources focus on heart health, they include basic information about how to quit smoking. For free help and support to quit smoking, you may call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).

If you have an aneurysm, it can lead to a serious complication of a dissection or rupture. Vasculitis also can lead to serious cardiovascular complications, 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 immediately. Every minute matters.

Aneurysm rupture or dissection

Signs and symptoms of a dissection or rupture may include:

• Light-headedness
• Paleness
• Rapid heart rate
• Sudden, severe pain in your abdomen, 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 abdomen 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.

Read more about the signs and 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.

Read more about the signs and symptoms of a stroke.