Vasculitis Living With Vasculitis

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

If vasculitis responds to treatment, it may go into remission (a period of time when you don’t have symptoms).

• Talk to your provider about any new symptoms and other changes in your health, including side effects of your medicines.
• Your provider will see 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.
• Because of your vasculitis, you may have a higher risk of getting a serious case of COVID-19, especially if you have another serious health condition. Keep your vaccines current and follow hand washing, masking, and social distancing recommendations.

To check on your condition, your healthcare provider may recommend some regular tests or procedures.

• Blood tests look for abnormal levels of certain blood cells and antibodies.
• Heart tests may capture images of areas of concern.
  • 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.

Most people with vasculitis that is under control or not active can have a healthy pregnancy. However, vasculitis can raise the risk of blood pressure-related disorders in pregnancy and during cesarean delivery. As a result, the risk of miscarriage is higher. Vasculitis can also raise the risk that the baby will not grow as fast in the womb or will be born early. With some types of vasculitis, there is a higher risk of flares in pregnancy.

If you have vasculitis and are thinking about becoming pregnant, it is very important to talk to your healthcare provider and make a plan to manage your condition during pregnancy.

• If your vasculitis is not under control, pregnancy can harm your health. Work together with your provider to bring your vasculitis into remission first. If you become pregnant and did not plan it, talk to your provider as soon as you can.
• 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 regularly check your heart and any blood clotting conditions during pregnancy. Talk to your provider to understand the risk of your child having vasculitis, too.
• Some medicines given to people who have vasculitis can be dangerous to a developing baby, so be sure your healthcare provider knows what you are taking. Your provider may need to adjust your medicines during pregnancy. Do not stop taking medicine without first talking with your provider.
• Vasculitis raises your risk of high blood pressure during pregnancy. The risk of preeclampsia and other high blood pressure-related disorders during pregnancy is also higher. Your provider should watch your blood pressure closely.
• In some cases, flares can occur after birth. Be sure to continue taking your medicine and check in with your provider regularly after your child is born.

After vasculitis is treated and goes into remission, you may have flares. You may have the same or 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 high blood cholesterol, can help prevent flares.

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 healthcare provider may carefully stop your medicines. However, you will still need to be monitored for flares.

An aneurysm can lead to a more serious problem like 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 dissection or rupture

Symptoms of a dissection or rupture may include:

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

Heart attack

Signs of a heart attack include mild or strong chest pain or discomfort in the center of the chest or upper stomach area. It may last for a few minutes or more, or it may go away and come back. A heart attack can feel like pressure, squeezing, fullness, heartburn, or indigestion. There may also be pain down the left arm.

Women may feel chest pain and pain down the left arm, but are more likely to have symptoms such as shortness of breath, nausea, vomiting, unusual tiredness, and back, shoulder, or jaw pain.

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.