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Antiphospholipid syndrome: the signs and what they mean | CION Cancer Clinics
The main symptoms of antiphospholipid syndrome are blood clots and pregnancy problems: a swollen, painful leg, sudden breathlessness, a stroke at a young age, or repeated miscarriages. APS is an immune condition, not cancer, and many people feel well between events. This page explains the signs that need 108 straight away, how the diagnosis is confirmed, and what your blood report can and cannot tell you. At CION Cancer Clinics, our haematologist cares for anaemia, bleeding, clotting and inherited blood disorders, with ArogyaSri, CGHS and cashless insurance accepted.
On this page
- What are the symptoms of antiphospholipid syndrome?
- How does APS show itself in the body?
- What do the words on an APS blood report mean?
- How do doctors confirm it is APS?
- How is APS managed, and what can this page not tell you?
- What do people often get wrong about APS?
- Common questions about antiphospholipid syndrome
The short answer
What are the symptoms of antiphospholipid syndrome?
The main signs of antiphospholipid syndrome are blood clots and problems in pregnancy. A clot in a leg vein, a stroke at a young age, or repeated miscarriages are the most common ways it first shows itself.
What is actually going wrong
Antiphospholipid syndrome, often shortened to APS, is an immune condition. Your immune system makes antibodies, proteins that normally fight infection, which wrongly act on proteins in the blood. The result is blood that clots more easily than it should, in veins, in arteries, or in the small vessels of the placenta during pregnancy.
Why there is no single symptom
APS itself does not hurt. You feel the effects of a clot, and those depend on where the clot forms. That is why one person with APS first meets a vascular doctor with a swollen leg, another meets a neurologist after a mini-stroke, and a third is sent to a haematologist by her obstetrician. Between events, many people feel entirely well.
It is not cancer
APS is not a blood cancer and does not turn into one. It is seen by haematologists because they look after clotting problems, and often by rheumatologists too, because it can occur alongside lupus, another immune condition.
Call 108 or go to the nearest emergency department now for sudden breathlessness, chest pain, coughing up blood, a drooping face, a weak arm or leg, slurred speech or sudden loss of vision. These can mean a clot in the lung or brain, and every minute matters. A painful, swollen calf on one side needs a doctor the same day. If you are pregnant and have severe headache or sudden swelling of the face and hands, go to the hospital today.
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Ask an oncologistWhere it shows up
How does APS show itself in the body?
Most people have signs from one group only. Knowing the groups helps you tell your doctor about events that may seem unconnected.
Clots in the veins
The most common sign. A clot in a deep leg vein causes pain, swelling and warmth, usually in one leg. A piece can travel to the lungs.
What you may notice
- One swollen, tender calf
- Sudden breathlessness or chest pain
Clots in the arteries
Less common, but more serious. A clot in an artery to the brain can cause a stroke or a mini-stroke, sometimes in someone young with no other risk factors. Heart attacks can also happen.
Problems in pregnancy
Clots in the placenta can starve the baby of blood. This can show up as repeated early miscarriages, a later pregnancy loss, a baby growing too slowly, or high blood pressure in pregnancy called pre-eclampsia.
Other signs
Some people have signs that are easy to miss, and none of them proves APS on its own.
- A blotchy, lace-like purple pattern on the skin
- A low platelet count, called thrombocytopenia
- Heart valve changes seen on an echo scan
On your report
What do the words on an APS blood report mean?
- Lupus anticoagulant
- A confusing name. It is an antibody that makes blood clot more, not less, and many people who have it do not have lupus.
- Anticardiolipin antibodies
- Antibodies against a fat-protein mix in cell walls. Your report may list IgG and IgM types separately.
- Anti-beta-2 glycoprotein I
- Antibodies against a blood protein that helps control clotting. It is the third of the three standard tests.
- Triple positive
- All three tests came back positive. This usually points to a higher clot risk than one positive test.
- Primary or secondary APS
- Primary means APS on its own. Secondary means it sits alongside another immune condition, most often lupus.
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Getting a diagnosis
How do doctors confirm it is APS?
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An event that raises the question
A clot without a clear reason, a clot at a young age, a stroke in a young adult, or repeated pregnancy losses lead the doctor to think about APS.
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The first blood tests
The three antibody tests above. Blood thinners, and a recent clot itself, can upset the lupus anticoagulant result, so tell the laboratory which medicines you take.
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A repeat test
Antibodies can appear briefly after an infection and then vanish. A positive result is therefore repeated after a gap of a few months. Only a result that stays positive supports the diagnosis.
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Putting it together
The haematologist reads the repeat results alongside your history of clots or pregnancy problems. A positive test with no clot or pregnancy problem is not the same as having the syndrome.
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A plan agreed with you
What to take, for how long, how it will be checked, and what to do before any pregnancy or operation. Bring the family member who helps with your medicines.
Being straight with you
How is APS managed, and what can this page not tell you?
APS cannot be switched off, but the clot risk can be lowered. Treatment depends on what has happened to you, not only on the blood test.
After a clot
Most people who have had a clot with APS are advised a blood thinner, often warfarin with regular INR blood checks, and often for the long term. Some of the newer blood-thinning tablets are not suitable for everyone with APS, particularly people who are triple positive or who have had an artery clot. Your haematologist chooses the medicine. Do not switch or stop one on your own.
In pregnancy
Women with APS are usually looked after jointly by an obstetrician and a haematologist, and are often offered low-dose aspirin, heparin injections or both. Warfarin can harm the baby, so plan any pregnancy with your team before you conceive.
What this page cannot tell you
A symptom list is not a diagnosis. A single positive antibody test is not APS. This page cannot tell you your own clot risk, which medicine suits you, or how a future pregnancy will go.
Reference ranges and test methods differ between laboratories. Antibody results are always read alongside your symptoms and a repeat test.Commonly believed
What do people often get wrong about APS?
Many women with APS go on to have a baby when the pregnancy is planned and closely watched by the right team. APS is a reason to plan carefully, not a reason to give up.
Antibodies can show up for a short time after an infection or with some medicines. The diagnosis needs a repeat positive test and a clot or pregnancy problem. Ask for the repeat before accepting the label.
It does not. The name is historical. Many people with this antibody have no lupus at all. Your doctor may still check for lupus if you have joint pains, rashes or other signs.
Feeling well is exactly what the medicine is meant to give you. The risk of another clot does not go away because the first one has healed. Any change must come from your haematologist.
Questions we are asked
Common questions about antiphospholipid syndrome
What is usually the first symptom of APS?
For most people the first sign is a clot, often in a leg vein, causing a painful, swollen calf. For many women it is repeated miscarriage. Some people are first found after a stroke or mini-stroke at a young age. A few are picked up because a routine clotting test came back abnormal.
Can APS cause headaches or memory problems?
Some people with APS report headaches, migraine or problems with memory and concentration. The link is not fully understood and these symptoms have many other causes. Tell your doctor, especially if they are new or getting worse. A sudden severe headache needs same-day care.
Is APS the same as lupus?
No. They are separate immune conditions that sometimes occur together. Many people with APS never develop lupus. If you have joint pains, rashes, mouth ulcers or kidney problems as well, your doctor may test for lupus and involve a rheumatologist.
Who gets antiphospholipid syndrome?
It is more common in women, and it usually shows up in young and middle-aged adults. People with lupus are at higher risk. It can run in families, but it is not passed on in a simple way like an inherited gene change such as factor V Leiden.
Can I plan a pregnancy if I have APS?
Yes, many women do. Speak to your haematologist and obstetrician before you try to conceive. If you take warfarin, your team will plan a change to a medicine that is safer in pregnancy. Do not make that change yourself, and tell the team as soon as you know you are pregnant.
Which doctor should I see for APS?
A haematologist is the right first doctor for the clotting side and the blood tests. If lupus or another immune condition is suspected, a rheumatologist joins in. In pregnancy, an obstetrician experienced with high-risk pregnancies works alongside them. Bring every report and scan you have.
Can APS go away?
The antibodies sometimes fall over time, but the tendency to clot is generally treated as long-lasting once the syndrome is confirmed. Your haematologist may repeat the tests over the years. Do not stop any medicine because a later result looks better. Ask what the new result changes.
Can CION help if I think I have APS?
Yes. CION's haematology team reviews your clot history, pregnancy history and blood reports, and explains what the results mean. Where specialist tests, a rheumatologist or a high-risk pregnancy team are needed, the team tells you what to ask for and helps coordinate it.
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Sources
- NHS — Antiphospholipid syndrome (APS)
- National Heart, Lung, and Blood Institute — Antiphospholipid antibody syndrome
- American Society of Hematology — Blood clots
- National Health Mission — National Health Mission
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
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