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, get ongoing medical care, and talk to your doctor about healthy lifestyle changes and other concerns.

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. Taking two medicines that thin your blood may increase your risk for bleeding.

Ongoing Medical Care

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

The medicines used to treat APS may cause bleeding. Bleeding can occur inside your body (internal bleeding) or on its surface. Know the warning signs of internal 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 may mean that your blood is too thin. Talk to your doctor about these warning signs and when to seek emergency care.

Lifestyle Changes

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

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

APS medicines may increase your risk for 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 your risk for a number of pregnancy-related problems. Talk to your doctor about how to manage your APS if your 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.

Birth Control

Women who have APS shouldn’t use birth control or hormone therapy that contains estrogen. Estrogen increases the risk for blood clots. Talk to your doctor about other birth control methods.

Surgery

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