Antiphospholipid Syndrome: Essential Information and Support FAQs

Public and Patient Education Department Program, October 17 and 24, 2006 Michael D. Lockshin, MD

How many days before a colonoscopy procedure should a person with APS cease taking their prescribed 81mg of aspirin or other similar medications? The amount of time before a procedure should be approximately 1 week for aspirin, clopidogrel (Plavix) or warfarin (Coumadin). For low molecular weight heparin you need 24 hours and for unfractionated heparin the patient should cease about eight hours before.

What are some symptoms a person with APS should worry about? Visual changes, speech defect, sudden change of anything, persistently blue digit, unusual bruising or red spots on the skin.

If I have APS, is my immune system overactive or underactive? There is a technical answer and a conventional answer to this question. The conventional answer is that the immune system is overactive and it produces an antibody that should not be there. The technical answer is that scientists are highly suspicious that the overactivity is an attempt by the body to compensate for an under active part of the immune system that we haven’t yet identified.

If you have lupus without APS, are you at risk for developing it later on? If you have APS without lupus, what are your chances for developing lupus? In general, if both diseases appear, they do so at about the same time, so the answers to the questions are “no” and “very low,” respectively.

Is oral surgery safe for someone with APS? In general, yes. But it depends on the specific details for the patient and for the oral surgery procedure. There may be specific precautions necessary, i.e., antibiotics, if heart valves are abnormal, or changes of anticoagulation medicine if the surgery is extensive.

Is a diagnosis of “sticky platelets” the same as APS? The British, especially those associated with Graham Hughes’s group, use the term “sticky platelets” to describe APS. There are other causes of sticky platelets and I don’t think the term is very accurate, so I don’t use it myself.

How do I know if my doctor is prescribing the right medication for me? That is always a tough question, because there’s a fair amount of variability in both patients and doctors. The best option is to get another opinion from someone who has a great deal of experience. This applies to any illness – not just antiphospholipid syndrome.

Why don’t doctors use a Greenfield filter as opposed to coumadin? Greenfield filters are used on occasion when the indication is correct. Clots form on the filter and above it, so you still have to take anticoagulation medication. (For those who don’t know, a Greenfield filter is a sort of mesh that is placed in the big vein leading from the legs to prevent blood clots in the legs or pelvis from traveling to the lungs. It is sometimes used for a short period of time after surgery and then removed when the risk of clotting is over. For someone with APS, the risk of clotting is never over. A Greenfield filter is usually used when the clots in the lower extremities are very big and very threatening and/or have already traveled to the lungs.)

If a pregnant woman has APS and severe preclampsia, should heparin absolutely be used? There is no history of clots or previous miscarriages. There are not clear rules on this, but severe preclampsia is considered to be a manifestation of APS, and most physicians who treat APS do advise the use of heparin in this circumstance. There is an additional reason to do so; in the animal models of pregnancy complications heparin appears to be beneficial in ways that are not associated with clot prevention, so the theory is right.

How is preclampsia related to APS? Early and severe preeclampsia occurs relatively commonly in women with APS whether or not they have had prior symptoms. There are a number of theories about the mechanism, but exactly how they are related biologically is not yet clear. Research in this area is very hot right now and we may have answers in the near future.

How common is it to have miscarriages, strokes, or a heart attack? Each of these problems can be a manifestation of antiphospholipid syndrome. For one treated patient to have all three to occur would be uncommon, at least over a 10-year period. However, if you ask about these things happening over 30 or 40 years, then there are not really clear answers since we have only known about antiphospholipid syndrome (separate from lupus) for about 15 years.

Is rituximab effective for the kidney disease aspect of APS? Rituximab is an experimental drug for antiphospholipid syndrome. We are asking this question right now in our current studies and hope to have an answer for this within a few years. At this moment the most honest answer is that we don’t know. See the complete article on the Hospital for Special Surgery’s web site

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