1. Do you have a clinically significant antiphospholipid antibody (aPL) profile?
Discuss with your doctor if your antiphospholipid antibody (aPL) profile is clinically significant (persistent versus transient aPL, lupus anticoagulant test positive versus negative, anticardiolipin or anti-β2-Glycoprotein-I tests moderate-to-high positive versus low titer positive).* Keep in mind that not every positive laboratory test is clinically significant.
2. Do you have antiphospholipid syndrome?
Discuss with your doctor if you have an established diagnosis of APS (symptomatic with history of blood clots) or you only have aPL positivity (non-symptomatic without clinical events). Keep in mind that if a long term preventive medication (e.g., warfarin, heparin, aspirin) is needed, it should be determined based on APS disease manifestations and other blood clot risk factors.
3. Do you have another systemic autoimmune disease such as lupus?
Concurrent systemic autoimmune diseases and aPL increase the chances of blood clots. Thus, the optimal control of your systemic autoimmune disease activity is crucial.
4. Do you smoke?
Smoking increases the risk of blood clots in aPL-positive patients. The solution is obvious: Avoid smoking and participate in smoking cessation counseling programs if you are a smoker.
5. Are you on birth control pills or hormone replacement therapy?
These pills may contain estrogen. Increased levels of estrogen heighten your chances of developing a clot. Discuss with your doctor whether other forms of contraception can be considered.
6. Do you have traditional cardiovascular risk factors such as hypertension, diabetes, high cholesterol, obesity, or a sedentary lifestyle?
Discuss with your doctor about the aggressive management of these conditions, exercise regularly, and eat sensibly.
7. Do you have a planned surgical procedure requiring prolonged immobility?
Prolonged immobility interrupts normal blood flow and increases the risk of blood clots. Convey your aPL-positivity to your physicians involved in your surgeries so that they can take additional blood clot prevention measures before and after your surgery.
8. Do you have a planned long journey (more than 4-5 hours) by plane, train, or car?
The risk of developing clots, particularly deep vein thrombosis (a clot in a vein, particularly from the legs) is considerable during a long journey. It is recommended to walk at least every hour when traveling. Drink plenty of water and limit your alcohol intake. Wiggle your toes or flex your feet while sitting. In addition, a pair of compression stockings could be worn in high risk patients. It is controversial if heparin treatment before a long journey prevents blood clots; discuss with your doctor for the final recommendations.
9. Do you know the early signs of blood clots?
Sudden onset pain, warmth, and swelling of the legs and arms, shortness of breath, chest pain, coughing up blood-streaked sputum, numbness, paralysis or weakness of face or limbs, slurred speech, and visual disturbances are some of the symptoms related to blood clots. You should call your doctor as soon as possible if you develop these symptoms.
10. Are there any counseling programs for aPL-positive patients to better understand blood clot prevention strategies?
You should always speak with your doctor about your risks of cardiovascular disease and about preventive medications or lifestyle changes that can decrease your chances of CVD specific to your needs.
Learn more about the Lupus and APS Center of Excellence.
Volunteer, Mary Kirkland Center for Lupus Care
Hospital for Special Surgery