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Living With Antiphospholipid Antibody Syndrome

Antiphospholipid antibody syndrome (APS) has no cure. However, you can take steps to control the disorder and prevent complications.

Take all medicines as your doctor prescribes and get ongoing medical care. Talk with your doctor about healthy lifestyle changes and any concerns you have.

Medicines

You may need to take anticoagulants, or "blood thinners," to prevent blood clots or to keep them from getting larger. You should take these medicines exactly as your doctor prescribes.

Tell your doctor about all other medicines you're taking, including over-the-counter or herbal medicines. Some medicines, including over-the-counter ibuprofen or aspirin, can thin your blood. Your doctor may not want you to take two medicines that thin your blood because of the risk of bleeding.

Women who have APS shouldn't use birth control or hormone therapy that contains estrogen. Estrogen increases the risk of blood clots. Talk with your doctor about other options.

Ongoing Medical Care

If you have APS, getting regular medical checkups is important. Have blood tests done as your doctor directs. These tests help track how well your blood is clotting.

The medicines used to treat APS increase the risk of bleeding. Bleeding might occur inside your body (internal bleeding) or underneath the skin or from the surface of the skin (external bleeding). Know the warning signs of bleeding, so you can get help right away. They include:

  • Unexplained bleeding from the gums and nose
  • Increased menstrual flow
  • Bright red vomit or vomit that looks like coffee grounds
  • Bright red blood in your stools or black, tarry stools
  • Pain in your abdomen or severe pain in your head
  • Sudden changes in vision
  • Sudden loss of movement in your limbs
  • Memory loss or confusion

A lot of bleeding after a fall or injury or easy bruising or bleeding also might mean that your blood is too thin. Ask your doctor about these warning signs and when to seek emergency care.

Lifestyle Changes

Talk with your doctor about lifestyle changes that can help you stay healthy. Ask him or her whether your diet may affect your medicines. Some foods or drinks may increase or decrease the effects of warfarin.

Ask your doctor what amount of alcohol is safe for you to drink if you're taking medicine. If you smoke, talk with your doctor about programs and products that can help you quit. Smoking can damage your blood vessels and raise your risk for many health problems.

APS medicines might increase your risk of bleeding. Thus, your doctor may advise you to avoid activities that have a high risk of injury, such as some contact sports.

Other Concerns

Pregnancy

APS can raise the risk of pregnancy-related problems. Talk with your doctor about how to manage your APS if you're pregnant or planning a pregnancy.

With proper treatment, women who have APS are more likely to carry babies to term than women whose APS isn't treated.

Surgery

If you need surgery, your doctor may adjust your medicines before, during, and after the surgery to prevent dangerous bleeding.

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Antiphospholipid Antibody Syndrome Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Antiphospholipid Antibody Syndrome, visit www.clinicaltrials.gov.

 
May 17, 2012 Last Updated Icon

The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.