I know I haven’t talked about my other illness a whole lot. I guess it’s about time I start explaining what it is. In addition to Lupus, I have Antiphospholipid Syndrome. APS is an autoimmune disease which can cause frequent clotting in arteries and veins and/or miscarriages. The clotting results from the presence of proteins in the blood called anti-phospholipid autoantibodies (commonly called aPL) formed against the person’s own tissues. These autoantibodies interfere with coagulation, leading to increased clot formation or thrombosis (in which blood flow stops due to a clot). It is a hypercoagulable state and requires lifelong treatment, usually with anticoagulants such as Warfarin or Heparin. Though treatments should be decided upon with your doctors. Only they will know which treatment plan is best for you based upon your presentation of the condition, your own personal situation, and other varying factors.
Sometimes APS is referred to by other names. I have 5 different doctors and I have heard each one of them call it various things. I’ve even one of them call APS several different things during the same appointment.
- Hughes Syndrome
- Anticardiolipin Syndrome
- Lupus Anticoagulant Syndrome
- Beta2Glycoprotien Syndrome
- Sticky Blood
- LA Syndrome
While men can get APS, just like with most autoimmune conditions women are at a much more increased risk for developing APS. It can occur at any age but it is most commonly diagnosed between the ages of 30-40. It is also more commonly seen in people with Systemic Lupus as a secondary condition. However, it can occur outside of this population as a primary condition as well.
There are some major symptoms of APS. Blood clots and as a result heart attacks, strokes, Pulmonary Embolism, DVTs and Miscarriages, are all common Clinical symptoms of APS. Not everyone that presents with a clotting event has a large blood clot as their presenting event. I did not. My presenting clotting event was a clot in my right eye called a Branch Retinal Vein Occlusion. This is a small clot in one of my retinal veins. It has left me with a small area of blindness in my right eye. I also had a miscarriage that my doctors are pretty certain was caused by a combination of APS and Lupus. This is the reason I am on Warfarin and the reason I have to get my INR checked so often. I will be on anticoagulants for the rest of my life. It may not always be Warfarin. They may eventually approve one of the newer ones for my condition, or they may decide some other anticoagulant is a better fit for my situation. Only time will tell though.
Most of the time APS is diagnosed after a presenting clotting event or after several miscarriages. Patients with the antiphospholipid syndrome can have a variety of antibodies to molecules called phospholipids in their blood. These antibodies include DVRL/RPR (a syphilis test that can be falsely positive in these patients), lupus anticoagulant, prolonged PTT, beta 2 glycoprotein I antibodies and anticardiolipin antibody. To be diagnosed with definite APS a person needs two positive test results spaced at least 12 weeks apart. Antibody levels can fluctuate over time and you may test positive for one type of antibody one time and another type of antibody another time.
For more information on APS please visit these links: