Q. I have tested positive for Antiphospholipid Syndrome, but have not had any real problems. What does this mean?

A. Some people with positive tests appear to have no medical problems, while some people can show a false positive following certain infections. In these instances follow up tests should be carried out. If the tests continue to be positive, there is undoubtedly a higher risk of blood clotting / thrombosis affecting potentially any part of the body, and treatment will be commenced, in these instances. Ecotrin on its own will probably be the treatment prescribed.

Q. What is the risk of further thrombosis?

A. The risk is quite high. Although it is only some 20 years since this syndrome was discovered, experience shows that over the years there is a continuing risk of thrombosis. Most specialists recommend long term / life long blood thinning treatment, either ecotrin (aspirin) for milder cases, or warfarin (comudin) following an episode of vein or artery thrombosis.

Q. Which treatment is best: ecotrin, heparin or warfarin?

A. Each of these treatments has its place. Ecotrin is a very useful prophylactic in patients who have positive tests but no thrombosis, and for otherwise healthy women in pregnancy who have positive anticardiolipin tests. This treatment has been extremely successful in preventing recurrent miscarriage due to the Antiphospholipid Syndrome. Heparin is useful as an immediate treatment for thrombosis. When necessary, it is also used in pregnancy, as warfarin is potentially harmful to the foetus. For those with vein or artery thrombosis warfarin is the correct and accepted treatment. Dosage is decided on an individual basis.

Q. I have had severe recurrent headaches and have been diagnosed with Antiphospholipid Syndrome. What is the treatment?

A. Headaches are possibly the most common feature of this syndrome. Some headaches are recurrent but tolerable, while others are severe. Often patients complain of migraines increasing in frequency and severity. Ecotrin is very useful in some patients. In others, where warfarin or heparin is commenced following a clotting episode, it is very interesting to note that these headaches often are reduced in severity or disappear completely.

Q. I have severe memory loss and am concerned about Alzheimer´s. I have been diagnosed as having Antiphospholipid Syndrome. Is there a connection?

A. Definitely. Memory loss is an important feature in some patients and is presumed to represent circulation problems in the brain.  It is interesting to note, that some patients, who have started anticoagulants for a thrombosis, have shown a marked improvement in memory. Some comment that the response to warfarin therapy is like "the lifting of a cloud". This is currently an important area of research.

Q. I have been diagnosed with Antiphospholipid Syndrome and have also been diagnosed with Multiple Sclerosis. Is there a connection?

A. When the circulation of the brain and spinal cord is affected, as can occur with the Antiphospholipid Syndrome, the patient can experience a variety of symptoms including pins and needles, sensation loss, movement disorders, speech impairment etc. Along with similar looking deposits showing up on brain scans, it is not surprising that some patients have been incorrectly diagnosed with Multiple Sclerosis. Once the correct diagnosis is made and anticoagulant therapy started, most neurological symptoms improve dramatically. Again research in this area is vital and ongoing.

Q. I have been diagnosed with Antiphospholipid Syndrome following several miscarriages, should I try again?

A. Since the recognition of the Antiphospholipid Syndrome, the outcome of pregnancy in patients suffering with this disorder has altered out of all recognition. Patients with your history are now commonly treated with aspirin and heparin throughout the pregnancy. This treatment has greatly improved the live birth rate.

Q. I have had two late pregnancy losses at 32 and 36 weeks, what hope is there for me?

A. Late pregnancy loss is another tragic feature of the Antiphospholipid Syndrome. A late pregnancy loss should always raise the possibility of the disorder.  Careful monitoring of coagulation therapy and very careful monitoring of the blood flow (using a Doppler) is required throughout the latter parts of pregnancy. As soon as evidence of blood flow impairment is found, patients will have an elective caesarean section.

Q. I have had a thrombosis as well as migraine and pregnancy loss. I also have joint pains and have been told I have lupus. Are the two connected?

A. Probably yes, in your case. The Antiphospholipid Syndrome was first discovered in patients who have lupus. Lupus is a generalised disease of the immune system and one in five patients with lupus has "sticky blood". On the other side, many patients who have Antiphospholipid Syndrome do not have lupus and do not seem to have a tendency to develop it. Therefore, although there is some overlap, in most patients the "sticky blood" syndrome appears to be a separate disorder. Again research is important in this area.

Q. Do all people with the syndrome have the same symptoms?

A. Definitely not. There are many ways in which the Antiphospholipid Syndrome can present itself. You will notice the long list of symptoms that individuals can present with. Patients can present with one or many of these symptoms and the effects can be minor, extreme or even fatal. You can see the difficulty in identifying the underlying cause, especially when the condition has had little exposure as in South Africa.

Q. Why have I not heard about the Antiphospholipid Syndrome before?

A. Frustrating as it is, APS is a relatively "new disease" and 23 years is not long in the medical field. Any breakthrough or discovery has to be thoroughly checked. Research studies have to be agreed on, financed and implemented with extreme care. Results have to be analysed, checked and rechecked, then publication has to be agreed on, financed and distributed. These publications are often distributed to individual specialist fields. Therefore it has taken a great deal of time for APS to reach into the various specialities of medicine. Often General Practitioners, the first person you will see, are the last to hear the news. Time is being wasted getting the message out.

Q. Is APS infectious, can I catch it?

A. No - APS is not an infectious disease; you cannot catch it.

Q. If you have lupus, does that mean you also have Antiphospholipid Syndrome?

A. No, 1 in 5 patients with lupus have Antiphospholipid Syndrome and an increased risk of clotting. The reverse, however, does NOT apply and MOST people with Antiphospholipid Syndrome do NOT have lupus.