There are two types of antiphospholipid syndrome.
- Primary antiphospholipid syndrome is when the disease occurs on its own. More than half of people with the condition have this type.
- Secondary antiphospholipid syndrome is when the disease is related to another condition, most commonly a condition called lupus.
Some people are affected by symptoms more than others. You may have general or mild symptoms or you may develop more severe symptoms because of a blood clot in a vein or artery.
If you have general symptoms, they may include the following.
- Loss of memory.
- Feeling dizzy.
- Eyesight problems, including double vision and sudden loss of vision.
- Red, blotchy patches on the skin on your wrists and knees.
The symptoms of a blood clot will depend on where the clot is and which part of the body is affected. Clots can form in any blood vessel, however, some of the main symptoms are listed below.
- Pain, tenderness and swelling in your calf, caused by a clot in your leg.
- Shortness of breath, pain in your chest and coughing up blood, caused by a clot in your lung.
- Weakness on one side of your face and body, slurred speech, memory problems or feeling confused. These symptoms can be caused by a clot in your brain (a stroke).
- Chest pain, pain in your arms or jaw and shortness of breath, caused by a clot in your heart (a heart attack).
- Repeated miscarriages. This is caused by clots developing in the placenta, which affects the blood supply to your baby.
If you have had a blood clot or problems during a pregnancy, your doctor is likely to ask you to have a blood test. This is to check for antiphospholipid antibodies.
Your GP may refer you to another doctor, depending on what type of symptoms you have. You may need to see a haematologist (a doctor who specialises in blood disorders) or an obstetrician (a doctor who specialises in pregnancy and childbirth).
Not everyone who has antiphospholipid antibodies in their blood will develop blood clots or have symptoms. So some people don’t need treatment.
If you do need treatment, your doctor will usually prescribe an anticoagulant (anti-clotting) medicine for you to take. This will thin your blood and reduce the likelihood of it clotting. There are three medicines you may be prescribed – aspirin, heparin and warfarin.
If you have antiphospholipid syndrome but haven't had a blood clot, you may be prescribed a small amount of aspirin to take every day. If you can’t take aspirin, you may be given an alternative medicine, such as clopidogrel.
If you have had a clot in one of your blood vessels, you will usually be prescribed warfarin. Most people take warfarin as a tablet. You will often need to take anticoagulation medicines for the rest of your life.
If you're pregnant, you will be prescribed aspirin or heparin, or often both. This is because warfarin could harm your unborn baby.
If you're taking warfarin, you will have regular blood tests to check how much your blood is clotting. You can have this done at your GP surgery or at a hospital clinic. Sometimes, people can test their blood themselves using a self-testing machine.
Your doctor or pharmacist will also give you an anticoagulant treatment booklet, which has information in it about your medicines. You will also be given an alert card, which you should show to a health professional before you have any other treatment.
Prevention of blood clots
There are several things you can do to reduce your chances of getting blood clots if you have antiphospholipid syndrome. The main ones are listed below.
- If you smoke, stop.
- Be active and a healthy weight for your height.
- If you’re considering taking hormone replacement therapy (HRT) or need contraception, talk to your doctor about your choices. The contraceptive pill and HRT can both increase your chances of developing a blood clot.
- If you’re going to be sitting still for a long time, for example, on an aeroplane, take steps to prevent a blood clot. For example, you can wear compression stockings and get up and walk around regularly.
If you have antiphospholipid syndrome, your blood contains antiphospholipid antibodies that make it more likely to clot. The exact reasons why some people have these antibodies, and others don’t, aren't fully understood. Doctors also don’t yet understand why some people have symptoms or develop clots when they have antibodies, and others don’t.
As blood clots can form in arteries and veins in any part of your body, there are a number of complications that can develop. These complications can be very serious or life-threatening.
- pregnancy problems, including miscarriage and pre-eclampsia
- heart attack, angina (chest pain) or heart valve problems
- stroke or transient ischaemic attack (mini stroke)
- high blood pressure
- kidney problems
- being unable to get pregnant (infertility)
- pulmonary embolism (blood clot in your lung)
- deep vein thrombosis (blood clot in your calf)
A small number of people with antiphospholipid syndrome develop a rare, but serious, complication called catastrophic antiphospholipid syndrome. Catastrophic antiphospholipid syndrome happens if you develop blood clots in many different organs within days or weeks of each other. It can be life-threatening.
Do medicines for antiphospholipid syndrome have any side-effects?
Yes, it's possible that you may get some side-effects while taking medicines for antiphospholipid syndrome. However, your doctor will check your health and do blood tests regularly to monitor you and reduce the risk of any serious side-effects.
There are three medicines that are commonly prescribed to treat antiphospholipid syndrome;
All of them affect how your blood clots.
Medicines used for treating antiphospholipid syndrome can increase your risk of internal and external bleeding. The signs that you may be bleeding include:
- unexplained bleeding from your gums or nose
- heavier periods than usual
- blood in your vomit (sick) or vomit that looks like coffee grounds
- bright red blood in your stools or black, tarry stools (faeces)
- pain in your abdomen (tummy)
- headache, loss of memory or feeling confused
- sudden changes in your vision
- sudden loss of movement in your limbs
To make sure you're taking the right amount of medicine, you need to have regular blood tests. These tests can be done at your GP surgery or a hospital clinic. You may also be able to test your blood yourself using a self-testing machine.
Warfarin can also interact with a wide range of other medicines, causing your blood clotting times to change. Whenever you’re prescribed a new medicine, tell the person prescribing it, and your pharmacist, that you’re also taking warfarin. If you would like to take over-the-counter medicines, such as painkillers or cough and cold medicines, or any herbal medicines, always check with your doctor as these can also interact with warfarin.
Aspirin can have some side-effects that affect your stomach and bowel, including indigestion. If you’re taking aspirin then tell your pharmacist before you buy any over-the-counter medicines such as painkillers or cough medicine. This is because they can cause similar side-effects or interact with aspirin. If you can’t take aspirin, your doctor may prescribe a medicine called clopidogrel instead.
How long will I need to take anticoagulation medication for?
If you have had a blood clot caused by antiphospholipid syndrome, you will probably need anticoagulant medicines for a long time, possibly for the rest of your life.
Treatment of antiphospholipid syndrome is aimed at thinning your blood, to reduce the likelihood of it clotting.
If you have antiphospholipid syndrome and have had a blood clot, there is a high risk of you developing another one if you stop taking your medicines. Therefore, you will probably need to take medicine for the rest of your life.
What type of doctor will I need to see to be treated for antiphospholipid syndrome?
If you have antiphospholipid syndrome, you will probably be treated by a specialist. The doctor you see will depend on the symptoms you have, and which parts of your body are affected.
Antiphospholipid syndrome can cause many different symptoms, depending on which part of your body is affected.
If the condition is affecting you during a pregnancy then you will be referred to an obstetrician – a doctor who specialises in pregnancy and childbirth. You may need to see an obstetrician who has special experience in high-risk pregnancies.
Otherwise, you may be treated by a doctor that specialises in conditions that affect particular areas of the body. For example, if you have heart problems, you may see a cardiologist; if you have a clot that affects your brain you may see a neurologist. Ask your doctor for more information.
- Hughes Syndrome Foundation
020 7188 8217
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- Cohen D, Berger S, Steup-Beekman G, et al. Diagnosis and management of the antiphospholipid syndrome. BMJ 2010;340:c2541. doi:10.1136/bmj.c2541
- Antiphospholipid syndrome. Arthritis Research UK. www.arthritisresearchuk.org, published April 2011
- About Hughes/antiphospholipid syndrome. Hughes Syndrome Foundation. www.hughes-syndrome.org, accessed 30 May 2013
- What are the signs and symptoms of antiphospholipid syndrome. National Heart, Lung, and Blood Institute. www.nhlbi.nih.gov, published May 2012
- Antiphospholipid syndrome treatment and management. Medscape. www.emedicine.medscape.com, published January 2012
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- Living with antiphospholipid antibody syndrome. National Heart, Lung, and Blood Institute. www.nhlbi.nih.gov, published May 2012
- Hughes Syndrome Foundation
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