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Antiphospholipid syndrome

Published by Bupa's health information team, May 2009.

This factsheet is for people who have antiphospholipid syndrome, or who would like information about it.

Antiphospholipid syndrome is a condition where your blood is more likely to clot than normal. It's also known as Hughes syndrome.

About antiphospholipid syndrome
Types of antiphospholipid syndrome
Symptoms of antiphospholipid syndrome
Complications of antiphospholipid syndrome
Causes of antiphospholipid syndrome
Diagnosis of antiphospholipid syndrome
Treatment of antiphospholipid syndrome
Prevention of blood clots
Questions and answers
Related topics
Further information
Sources

About antiphospholipid syndrome

Antiphospholipid syndrome is a condition where your blood is at a higher risk of clotting than normal. Because of the high tendency of your blood to clot, the condition is often referred to as 'sticky blood'.

Antiphospholipid syndrome is an autoimmune disease. Your body's immune system usually produces antibodies to fight off infections caused by bacteria and viruses. An autoimmune disease is a condition caused when antibodies from your immune system attack your own body by mistake.

If you have antiphospholipid syndrome, you will have antibodies in your blood that attack proteins bound to phospholipids. Phospholipids are fats found throughout your body, particularly in the outer coating of cells such as blood cells.

Antiphospholipid syndrome affects adults and children. It's most common in adults aged between 20 and 50.

Types of antiphospholipid syndrome

Antiphospholipid syndrome is sometimes related to other conditions, most commonly another autoimmune disease called systemic lupus erythematosis (SLE). If antiphospholipid syndrome is related to another condition, it's known as secondary antiphospholipid syndrome. If not, it's known as primary antiphospholipid syndrome.

Symptoms of antiphospholipid syndrome

Having antiphospholipid syndrome makes it more likely that clots will form in your blood vessels. Blood clots can form in both your arteries and veins, in any part of your body. There are a wide range of possible problems that can occur, depending on which parts of your body are affected. The more common and serious symptoms are discussed here.

Heart

Heart attack. Heart attacks can happen if a clot blocks an artery that supplies your heart with blood. Symptoms of a heart attack include chest pain, pain in the arms or jaw, sweating and shortness of breath.
Valve disease. Antiphospholipid syndrome can affect how the valves in your heart work. This can mean that blood can't flow through your heart as it should. Symptoms include tiredness, breathlessness and swollen ankles.

Lungs

Pulmonary embolism. This is a clot in one of the blood vessels in your lungs. The clot may start in a vein in your leg (a deep vein thrombosis) then travel to your lungs. It can cause chest pains and shortness of breath. A pulmonary embolism can be fatal if the clot is very large and blocks the main blood supply to your lungs.

Nervous system (brain and spinal cord)

Stroke. Stroke is a serious condition, caused when the blood supply to part of your brain is cut off. It can cause weakness or paralysis, usually on one side of your body only, slurred speech and confusion. Antiphospholipid syndrome is often the cause of 'young strokes' - strokes in people under 45.
Memory loss. Memory loss can sometimes develop if you have a clot in a blood vessel to your brain.
Eyesight problems, including double vision and sudden loss of vision.

Digestive system

If the blood supply to your intestines is affected by a clot it can cause pain in your tummy, fever (a high temperature) and blood in your faeces.

Endocrine (hormone) system

Clots in the blood vessels to your adrenal glands can cause Addison's disease. This means your adrenal glands aren't able to produce enough hormone, causing symptoms including tiredness, weakness, weight loss, nausea, fainting and pigmentation (colouring) of your skin.

Skin

Your skin may have a red blotchy appearance, particularly around your wrists and knees (this is known as livedo reticularis).
Ulcers and nodules (bumps) may form on your skin.

Blood

Thrombocytopenia. This means there is a low level of platelets in your blood. If it's severe, it can sometimes lead to bleeding from your capillaries (smallest blood vessels).

Deep vein thrombosis (DVT)

A DVT is a blood clot that forms in a deep vein, most commonly in your leg. Symptoms include pain and swelling of your leg. Sometimes the clot can travel to your lungs, causing a pulmonary embolism.

Pregnancy

Miscarriage. A miscarriage is when a pregnancy ends before 24 weeks. Having antiphospholipid syndrome can mean that the amount of blood travelling through the placenta to reach your baby is reduced. This means there is a higher risk of you having a miscarriage.
Pre-eclampsia. This is a condition which can occur during pregnancy, giving you high blood pressure and causing protein to appear in your urine. It's more likely to occur if you have antiphospholipid syndrome.

Complications of antiphospholipid syndrome

Catastrophic antiphospholipid syndrome is a very rare, but serious complication. It happens when someone with antiphospholipid syndrome develops widespread blood clots in many different organs. It can be fatal, even if you have treatment.

Catastrophic antiphospholipid syndrome sometimes happens if somebody with antiphospholipid syndrome gets an infection, such as a sore throat or chest infection. It can also happen if someone with antiphospholipid syndrome stops taking their medication.

Causes of antiphospholipid syndrome

The exact reasons why you may develop antiphospholipid syndrome aren't fully understood at present. We know that there are antiphospholipid antibodies in your blood and they make your blood more likely to clot. Generally, the higher the levels of antiphospholipid antibodies in your blood, the greater the risk of blood clots forming. Sometimes, the formation of a blood clot is triggered by an infection, but they usually occur out of the blue.

Diagnosis of antiphospholipid syndrome

For you to be diagnosed with antiphospholipid syndrome there must be antiphospholipid antibodies present in your blood. You will also have experienced one or more of the key features of the condition, such as a miscarriage or a blood clot.

Your GP will ask you some questions to see if you have experienced any of the symptoms. If you're female, you will be asked if you have been pregnant in the past and whether there were any complications.

If your GP thinks you have antiphospholipid syndrome, you will need to have a blood tests. A sample of blood will be taken, usually from a blood vessel in your arm, and sent to a laboratory for testing. Your blood will be tested for two antiphospholipid antibodies - anticardiolipin antibody (ACA) and lupus anticoagulant (LA). If these tests are positive, they are usually repeated six to eight weeks later, to confirm the results.

Your GP may refer you to another doctor, depending on what type of symptoms you have. For example, you may need to see a haematologist (a doctor who specialises in blood disorders) or an obstetrician (a doctor who specialises in pregnancy).

Treatment of antiphospholipid syndrome

You will usually need to take anticoagulant (anti-clotting) medication. This will thin your blood and reduce the likelihood of it clotting. There are three drugs you may be prescribed. These are aspirin, heparin and warfarin.

Aspirin is most effective at preventing clots forming in your arteries. If you have antiphospholipid syndrome but haven't had a blood clot, you may be prescribed a low dose of aspirin to take every day.

If you have had a clot in one of your veins, you will usually be prescribed either heparin or warfarin. Heparin can only be given to you as an injection and it isn't usually prescribed long-term. Most people are prescribed warfarin, which can be taken as tablets.

If you're pregnant, you will be prescribed aspirin or heparin, or often both. This is because warfarin could cause harm to your unborn baby.

If you're taking warfarin, your blood will be regularly monitored with a clotting test. This test can be done at your GP surgery or at a hospital clinic. Sometimes, people can test their blood themselves using a special self-testing machine.

Prevention of blood clots

There are several ways to reduce your risk of getting blood clots.

If you smoke, try to stop. If you need help giving up, ask your GP for advice.
Maintain a healthy weight and exercise regularly.
Consider the risks and benefits of taking the oral contraceptive pill, as taking it can increase your risk of blood clots.

With the right treatment and lifestyle changes, most people with antiphospholipid syndrome can live a normal, healthy life.