How is APS diagnosed?

APS is usually diagnosed from a combination of a positive blood test and symptoms.

If you are under 50 and have suffered a thrombosis causing a deep vein thrombosis (DVT) or a pulmonary embolism (PE), or have had a transient ischemic attack (TIA), stroke or heart attack, particularly more than once, or have had more than one miscarriage or late pregnancy loss, you should discuss with your doctor whether you need the blood tests.

Until 2016, screening for antiphospholipid antibodies (aPL) was not automatically carried out in people who have young (aged under 50) strokes. However, APS Support UK approached the team responsible for updating the National Stroke Guidelines in October 2016. We wrote the section on testing for aPL in stroke survivors that is now included in the Royal College of Physicians National Stroke Guidelines.

Nevertheless, testing for aPL in people who have suffered a DVT or heart attack can still be arbitrary, and women have to go through three consecutive miscarriages before they are tested. Our charity would like to change this in the UK so people are routinely screened when they have thrombosis or have more than one miscarriage.

It is important to inform your doctor about any previous clotting or pregnancy problems and less specific clues such as headaches, migraines, visual disturbances, memory loss, dizziness and fatigue. Family history will also help your doctor reach a diagnosis, so remember to list any immediate family with an autoimmune disease or history of thrombosis. We recommend that you print out our fact sheet: Diagnosis: how to get tested, and take it with you to your appointment.

If your doctor makes a diagnosis based on the positive blood test and symptoms, they will likely refer you to a specialist. The particular type of specialist can depend from hospital to hospital throughout the UK, but you will likely see either a haematologist or a rheumatologist. Most early pregnancy units will have a specialist to treat women with APS.

Our charity maintains the only national directory of APS specialists throughout the UK, based on recommendations we receive from patients.

How is APS treated?

Currently APS cannot be cured; instead there are two possible approaches to treatment: either to suppress or remove the antibodies which cause the problem, or to make the blood less sticky by thinning it.

As treatment to suppress or remove the antibodies is presently only in the developmental stage, the current treatment is aimed at preventing clotting by ‘thinning’ the blood with anticoagulation (literally anti-clotting) therapy.

In general anticoagulants fall into two categories: those that come in tablet form and those that have to be injected into the skin. The most commonly used drugs are aspirin, heparin and warfarin, but there are also other drugs that can help alleviate symptoms.

The future of anticoagulation treatment is a major focus of research with new anticoagulation drugs being trialled to supplant warfarin; in particular, rivaroxaban is proving to be successful for many patients with venous clots such as DVTs or PEs.

As mentioned earlier, the other approach to treatment is to block the antibodies and suppress the harmful antiphospholipid antibodies (aPL). This therapy is also being researched but, until the exact causes of APS and mechanics of the effect of aPL on cells are known, this area of treatment remains at the developmental stage.

What is the outlook for APS patients?

Although there is currently no cure for APS the outlook for many patients is very positive, particularly those who have been diagnosed early and treated appropriately.

Being diagnosed as early as possible and treated correctly seems to have a direct bearing on how well patients will feel in the future. Some patients feel very well and have no symptoms, while others are more affected and find day-to-day living a struggle, particularly if they have had to recover from more than one thrombotic episode.

In pregnancy, the treatment of APS now means that women have a 70% chance of a successful birth compared to just 20% before diagnosis.

Despite being a potentially life-threatening condition, the general prognosis for most APS patients is good, and with the correct treatment and lifestyle changes the majority of patients can lead a relatively normal life provided they continue with their medication.

However, unfortunately a small number of people with APS continue to experience blood clots despite having extensive treatment – the reasons for this are still not known.

Living with APS

Living with a long-term condition means that you may have to make some adjustments to your life, and APS is no exception. By making certain adjustments you should be able to help stabilise your condition, reduce symptoms and increase your overall well-being.

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Related conditions

Some people with APS will also have other autoimmune conditions, as may their family members. APS has been linked with many other autoimmune conditions, including rheumatoid arthritis, lupus, Raynaud’s phenomenon, and Sjögren’s syndrome.

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Newly diagnosed

Receiving a new diagnosis of APS can be frightening, and no doubt you will want to know exactly what APS is. Following this, you will likely have a great many more questions to ask about the condition and how it can affect you. We are here to help!

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About us

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Our mission is to achieve earlier diagnosis and offer support to anyone affected by antiphospholipid syndrome (APS) through awareness, education and research.

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