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Antiphospholipid syndrome (APS)

Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome, is a disorder of the immune system that causes an increased risk of blood clots.

This means people with APS are at greater risk of developing conditions such as:

  • deep vein thrombosis (DVT), a blood clot that usually develops in the leg
  • arterial thrombosis (a clot in an artery), which can cause a stroke or heart attack
  • blood clots in the brain, leading to problems with balance, mobility, vision, speech and memory

Pregnant women with APS also have an increased risk of having a miscarriage, although the exact reasons for this are uncertain.

APS doesn't always cause noticeable problems, but some people have general symptoms that can be similar to those of multiple sclerosis (a common condition affecting the central nervous system).

Find out more about signs and symptoms of APS

What causes antiphospholipid syndrome?

APS is an autoimmune condition. This means the immune system, which usually protects the body from infection and illness, attacks healthy tissue by mistake.

In APS, the immune system produces abnormal antibodies called antiphospholipid antibodies.

These target proteins attached to fat molecules (phospholipids), which makes the blood more likely to clot.

It's not known what causes the immune system to produce abnormal antibodies.

As with other autoimmune conditions, genetic, hormonal and environmental factors are thought to play a part.

Find out more about the causes of APS

Who's affected

APS can affect people of all ages, including children and babies.

But most people are diagnosed with APS between 20 and 50 years of age, and it affects 3 to 5 times as many women as men.

It's not clear how many people in the UK have the condition.

Diagnosing APS

Diagnosing APS can sometimes be tricky, as some of the symptoms are similar to multiple sclerosis.

This means blood tests to identify the antibodies responsible for APS are essential in diagnosing the condition.

Find out more about diagnosing APS

How antiphospholipid syndrome is treated

Although there's no cure for APS, the risk of developing blood clots can be greatly reduced if it's correctly diagnosed.

An anticoagulant medicine, such as warfarin, or an antiplatelet, such as low-dose aspirin, is usually prescribed.

These reduce the likelihood of unnecessary blood clots forming, but still allow clots to form when you cut yourself.

Treatment with these medications can also improve a pregnant woman's chance of having a successful pregnancy.

With treatment, it's estimated there's about an 80% chance of having a successful pregnancy.

Most people respond well to treatment and can lead normal, healthy lives.

But a small number of people with APS continue to experience blood clots despite extensive treatment.

Find out more about treating APS

Catastrophic antiphospholipid syndrome

In very rare cases, blood clots can suddenly form throughout the body, resulting in multiple organ failure. This is known as catastrophic antiphospholipid syndrome (CAPS).

CAPS requires immediate emergency treatment in hospital with high-dose anticoagulants.

Find out more about catastrophic antiphospholipid syndrome (CAPS)

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Positive covid results

I have lupus and antiphospholipid syndrome. Any advice welcome.
I have lupus and antiphospholipid syndrome. Any advice welcome.
heda123
in LUPUS UK

consultant?

I have a condition called antiphospholipid syndrome but they believe this is sufficiently controlled for me to not go there anymore. I believe I also have RA but they say not. And I was previously told I had Sjorgrens, but apparently its not mentioned in my notes.
I have a condition called antiphospholipid syndrome but they believe this is sufficiently controlled for me to not go there anymore. I believe I also have RA but they say not. And I was previously told I had Sjorgrens, but apparently its not mentioned in my notes.
donnabrain
in Fibromyalgia Action UK

Medical Alert Bracelet?

Hello, I was told that I have SLE and more recently, that I also have antiphospholipid syndrome (no symptoms for APS besides lab results). I'm only on Plaquenil and a baby aspirin along with Vitamin C, D, and iron.
Hello, I was told that I have SLE and more recently, that I also have antiphospholipid syndrome (no symptoms for APS besides lab results). I'm only on Plaquenil and a baby aspirin along with Vitamin C, D, and iron.
nellie_4132
in LUPUS UK
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Top 10 Series: Antiphospholipid Syndrome and Skin Problems

Top 10 Points Patients Should Know About Skin Findings in Antiphospholipid Syndrome 1. What is antiphospholipid syndrome (APS)? Antiphospholipid syndrome (APS) is a systemic autoimmune disorder in which the patient’s immune system makes antibodies that target their own body cells.
Top 10 Points Patients Should Know About Skin Findings in Antiphospholipid Syndrome 1. What is antiphospholipid syndrome (APS)? Antiphospholipid syndrome (APS) is a systemic autoimmune disorder in which the patient’s immune system makes antibodies that target their own body cells.
lupus-support1Administrator
in LUpus Patients Understanding and Support

Clexane

I have Antiphospholipid syndrome but none of the symptoms. I have had two miscarriages and 3 unsuccessful rounds of ivf. My question is should I start clexane so early on? Most people seem to start it from transfer day.
I have Antiphospholipid syndrome but none of the symptoms. I have had two miscarriages and 3 unsuccessful rounds of ivf. My question is should I start clexane so early on? Most people seem to start it from transfer day.
Amberwell5
in Fertility, Miscarriage & IVF Support

Paramedics

Mums fine and so I am, ambulance called for mums neck pain I, just thought I would inform you all that the paramedic had no idea what antiphospholipid syndrome was, he was the junior one but the senior one didn’t have a clue either, he looked it up when I told him too Mum hasn’t got Hughes syndrome,
Mums fine and so I am, ambulance called for mums neck pain I, just thought I would inform you all that the paramedic had no idea what antiphospholipid syndrome was, he was the junior one but the senior one didn’t have a clue either, he looked it up when I told him too Mum hasn’t got Hughes syndrome,
daisyd
in Hughes Syndrome - APS Support

Thrombophillia

Please could someone explain the difference between thrombophillia and Antiphospholipid syndrome? and the differing risk factors for forming clots? Thanks you
Please could someone explain the difference between thrombophillia and Antiphospholipid syndrome? and the differing risk factors for forming clots? Thanks you
Zamalek
in Hughes Syndrome - APS Support

New here... Looking for options

I'm also on Wellbutrin (300mg) for weight gain due to the medications (about 25 pounds in 2 years), Xarelto (20mg for Antiphospholipid syndrome), and vitamin D. My regiment is not great... I still suffer greatly, but if I miss any doses, I'm headed to the nut house.
I'm also on Wellbutrin (300mg) for weight gain due to the medications (about 25 pounds in 2 years), Xarelto (20mg for Antiphospholipid syndrome), and vitamin D. My regiment is not great... I still suffer greatly, but if I miss any doses, I'm headed to the nut house.
dodonnell
in Restless Legs Syndrome

Sjorgrens or not

I was under the lupus unit for 14 years as I also have antiphospholipid syndrome. I have recently been told that I don't have sjorgrens as my antibodies are negative. I have also been discharged from the unit, due to .y negative antibodies. My eyes are very troublesome of late.
I was under the lupus unit for 14 years as I also have antiphospholipid syndrome. I have recently been told that I don't have sjorgrens as my antibodies are negative. I have also been discharged from the unit, due to .y negative antibodies. My eyes are very troublesome of late.
donnabrain
in Sjogren's Support

New cause of COVID-19 blood clots identified.

Outside of novel coronavirus infection, these clot-causing antibodies are typically seen in patients who have the autoimmune disease antiphospholipid syndrome.
Outside of novel coronavirus infection, these clot-causing antibodies are typically seen in patients who have the autoimmune disease antiphospholipid syndrome.
2greys
in British Lung Foundation

Cyst on kidney

I do have a diagnosis of antiphospholipid syndrome and was under the lupus unit for that from 2006 until last October, when I was discharged.
I do have a diagnosis of antiphospholipid syndrome and was under the lupus unit for that from 2006 until last October, when I was discharged.
donnabrain
in LUPUS UK

Lupus/APS and cod liver oil

Hi, I'm 49, and have lupus with antiphospholipid syndrome. I'm currently on lifelong warfarin, statins, vit D, hydroxychloroquine and methotrexate injections. The inflammatory arthritis is very painful, would cod liver oil be safe to take with anticoagulants?
Hi, I'm 49, and have lupus with antiphospholipid syndrome. I'm currently on lifelong warfarin, statins, vit D, hydroxychloroquine and methotrexate injections. The inflammatory arthritis is very painful, would cod liver oil be safe to take with anticoagulants?
Gerardina
in LUPUS UK

Covid19 is starting to remind me of CAPS

Has anyone else seen the resemblance of severe covid19 to catastrophic Antiphospholipid syndrome? High D dimer, pulmonary embolism, kidney and liver failure with high cytokine Storm. Treatments are similar as well.
Has anyone else seen the resemblance of severe covid19 to catastrophic Antiphospholipid syndrome? High D dimer, pulmonary embolism, kidney and liver failure with high cytokine Storm. Treatments are similar as well.
Roarah
in LUPUS UK

AntiPhospholipid Syndrome

Hi, Anyone aware of this condition - I’m anticipating to be diagnosed as having it. Read some content via Dr Google but would welcome any insight from those in the know/with experience of it. Any guidance much appreciated. Thanks.
Hi, Anyone aware of this condition - I’m anticipating to be diagnosed as having it. Read some content via Dr Google but would welcome any insight from those in the know/with experience of it. Any guidance much appreciated. Thanks.
Arnold1001
in Anticoagulation UK

AZATHIOPRINE OR HCQ IN APS TREATMENT?

hello all, I have been diagnosed with catastrophic antiphospholipid syndrome and had a brain stroke in juky 2017. Sinve then i am taking warfarin and azathioprine( immunosuppresent). Although i did not encounter any clot during this time, my doctor replaced azathioprone with HCQ 3 weeks ago.
hello all, I have been diagnosed with catastrophic antiphospholipid syndrome and had a brain stroke in juky 2017. Sinve then i am taking warfarin and azathioprine( immunosuppresent). Although i did not encounter any clot during this time, my doctor replaced azathioprone with HCQ 3 weeks ago.
Rajatnijh12
in Hughes Syndrome - APS Support

Mepacrine (older Ani-malarial)

(With Lupus, Sjogrens Syndrome and/or Antiphospholipid Syndrome) Thank you, stay safe everyone. 💋 x
(With Lupus, Sjogrens Syndrome and/or Antiphospholipid Syndrome) Thank you, stay safe everyone. 💋 x
WendyWoo50
in Hughes Syndrome - APS Support

COVID vaccine information for APS patients

APS Support UK contacted the MHRA and was told on 11th December 2020 that the Pfzier/BioNTech COVID vaccine is suitable for anyone with antiphospholipid syndrome (APS).
APS Support UK contacted the MHRA and was told on 11th December 2020 that the Pfzier/BioNTech COVID vaccine is suitable for anyone with antiphospholipid syndrome (APS).
lupus-support1Administrator
in LUpus Patients Understanding and Support

A great film/lecture - Antiphospholipid Syndrome (APS) in Psychiatry - Neuropsychiatric Manifestations

Antiphospholipid Syndrome (APS) in Psychiatry - Neuropsychiatric Manifestations - Dr Sanil Rege https://www.youtube.com/watch?v=RSCLMu45F30 MaryF
Antiphospholipid Syndrome (APS) in Psychiatry - Neuropsychiatric Manifestations - Dr Sanil Rege https://www.youtube.com/watch?v=RSCLMu45F30 MaryF
MaryFAdministrator
in Hughes Syndrome - APS Support

Blood clots and urticarial vasculitis syndrome

I was tested in the past for antiphospholipid syndrome and was told the results were negative. I've had more bloods taken to check this again but don't know my results yet. Can you test negative with this lupus-like syndrome and yet suffer these problems with clotting? Thank you 🌈
I was tested in the past for antiphospholipid syndrome and was told the results were negative. I've had more bloods taken to check this again but don't know my results yet. Can you test negative with this lupus-like syndrome and yet suffer these problems with clotting? Thank you 🌈
Hoofprints
in LUPUS UK

Blood clots and urticarial vasculitis syndrome

I was tested in the past for antiphospholipid syndrome and was told the results were negative. I've had more bloods taken to check this again but don't know my results yet. Can you test negative with this lupus-like syndrome and yet suffer these problems with clotting? Thank you 🌈
I was tested in the past for antiphospholipid syndrome and was told the results were negative. I've had more bloods taken to check this again but don't know my results yet. Can you test negative with this lupus-like syndrome and yet suffer these problems with clotting? Thank you 🌈
Hoofprints
in Vasculitis UK
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