Early diagnosis saves lives
Antiphospholipid syndrome (APS) is a blood clotting disorder that can cause strokes, heart attacks and DVTs. In pregnancy, it is a leading cause of miscarriage, stillbirth and pre-eclampsia
We've put together a collection of resources to help you learn more about antiphospholipid syndrome (APS), where to find support, how to make informed lifestyle choices and give you useful tips
Join forces with us to help raise awareness of antiphospholipid syndrome (APS), campaign on key issues, and raise funds. Without your support our charity could not continue its vital work.
Living with a long-term condition means that you 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.
Due to the unpredictable nature of the condition, people can be affected very differently so it is likely that not all the topics mentioned here will apply to you, particularly if you are not being treated with warfarin. However, we aim to look at common issues which affect most people, and to offer advice and practical suggestions on how you can help improve your life including:
Needless to say smoking is even more dangerous if you have APS as it causes cardiovascular disease. Smoking accelerates the hardening and narrowing of your arteries which means that you are two to four times more likely to develop a blood clot.
Blood clots in the heart (coronary thrombosis) can lead to a heart attack and around 30% are caused by smoking, while blood clots in the brain can lead to strokes. Smokers tend to develop coronary thrombosis ten years earlier than non-smokers.
By stopping smoking, you are removing another risk factor for the possibility of developing a blood clot.
It is also important to note that, if you are taking warfarin, toxins from cigarettes and tobacco can cause your liver to work overtime to try to remove them and, in turn, this absorbs more of your warfarin (since this is processed by your liver) and therefore can result in a lower INR. So when you do decide to stop, it is important to monitor your INR for the first few weeks of smoking cessation.
Anyone with APS is advised to eat a healthy balanced diet with plenty of good carbohydrates, protein, low-fat dairy products and lots of fruit and vegetables. Maintaining a healthy weight is important both in terms of reducing cardiovascular risks such as heart disease, and easing pressure on your bones and joints.
Sensible low GI diets have been found to be beneficial to patients with diabetes and lupus as it keeps the blood sugar level more stable, so this type of long-term diet is also recommended for APS. However, it is essential that you understand that low GI does not necessarily mean low fat, so remember to check the calories too.
If you are taking warfarin you should try to keep your vitamin K intake as consistent as possible. Warfarin works by interfering with how the liver uses the vitamin K and is affected by the amount of vitamin K in your diet. If your diet is reasonably consistent, then the level of vitamin K should stay the same and not affect your INR and warfarin dosage.
If your diet already contains foods rich in vitamin K, there is no need to change it or restrict the types of food you are eating; however, if you binge on foods rich in vitamin K, it will make the blood more likely to clot and will lower your INR.
We have compiled a list of those foods and drinks which contain high levels of vitamin K, average levels of vitamin K and those which are low. As green leafy vegetables are among the foods high in vitamin K, this does not mean these food sources should be avoided as they are vital for a healthy balanced diet, but you should try and maintain the same daily intake.
Recent research indicates that patients who have unstable INR control tend to have a poorer dietary intake of Vitamin K than patients with a stable INR and, therefore, it may be beneficial to provide such patients with supplementary Vitamin K to their diets to stabilise their INRs. However, more research is needed until this is confirmed.
If you decide to change your diet, such as increasing your vegetable intake as advised on low GI diets, you should discuss this with your doctor or anticoagulation clinic as they may need to monitor your INR more frequently and you may need to increase your warfarin dosage. Likewise, if your diet begins to include more foods that are low in vitamin K, your warfarin dose may need to be decreased.
As well as monitoring the vitamin K content in foods, people with APS who are taking warfarin should also be aware that some herbs and spices are natural anticoagulants so it is best not to binge on these and only consume them in moderation otherwise your INR could increase. There are also many popular natural herbal or health remedies warfarin that may potentially affect so you should discuss this with your doctor or anticoagulation clinic before introducing them into your diet.
You should also try to keep your alcohol intake as regular as possible if you are taking warfarin due to the complex interaction between alcohol and warfarin. Alcohol affects warfarin on two fronts—by acting as a mild anticoagulant and affecting the metabolism of the liver which is important for metabolising warfarin.
As a rule of thumb, two or three drinks per day - such as a glass of wine or a pint of beer are unlikely to affect your warfarin levels. However, intermittent binge drinking leads to an increase in the INR level due to warfarin being metabolised more slowly, while chronic heavy alcohol intake results in a lower INR level because the alcohol increases the metabolism of warfarin.
Alcohol is not the only drink which can have a detrimental effect to people taking warfarin. It was discovered that drinking large quantities of cranberry juice can act to intensify the potency of warfarin and, therefore, increases the risk of bleeding. This is thought to be due to the chemicals called flavonoids which are contained in cranberry juice. Although cranberry juice can provide a cheap means of preventing urinary tract infections because the flavonoids appear to prevent bacteria from sticking to the walls of the bladder, they can also inhibit the action of substances which the body uses to break down warfarin which, in turn, can cause a haemorrhage.
There are no specific exercise guidelines for people with APS as the level of exercise you are capable of will depend on how severely affected you are, if you suffer from arthralgia or are recovering from a thrombotic event.
Many people with APS lead extremely active lives and continue playing sports, running, cycling, climbing and going to the gym, while others are much more debilitated.
It will often take time to recover from a major event such as a stroke or heart attack and arthralgia can be very painful; however, it is still recommended that you try to engage in moderate to gentle regular exercise such as walking, tai chi, swimming or yoga. Tai chi is particularly helpful in overcoming balance problems and does not put any undue pressure on your joints.
If you are taking warfarin, you will have to be careful to try and prevent injuries that could make you bleed or bruise badly. Some contact sports may need to be avoided. As physical activity can also affect your INR, try to make ensure you take the same amount of exercise each day.
Exercise can help your body heal and also help you mentally, so it really is important to try to find something you enjoy doing which can easily be built into your lifestyle.
The type of medication you can take to treat other conditions will depend on the type of treatment you are prescribed for APS.
If you are being treated with aspirin then you must let the pharmacist know before you buy any over-the-counter medicines such as pain killers or cough medicine.
Your GP should be aware of any drug interactions with aspirin; in particular, you should not be prescribed medication which can cause gastrointestinal bleeding including non-steroidal anti-inflammatory drugs (NSAIDs) such as:
Many APS patients are prescribed clopidogrel instead of aspirin as it is gentler on the stomach and does not affect asthmatics. If you are taking clopidogrel, again, the same rules apply as with aspirin: you must let the pharmacist know before buying over-the-counter medicines and you should not be prescribed NSAIDs.
Aspirin and clopidogrel should not be taken together as this increases the risk of gastrointestinal bleeding.
It is safe to take paracetamol and codeine based pain relief if you are taking either aspirin or clopidogrel.
Heparin is used by a number of APS patients including women who must inject with heparin throughout their pregnancy, people taking warfarin who need to raise their INR level and a very small number of patients who are intolerant to warfarin.
Heparin is considered a relatively safe drug with not many contraindications but it should not be used if the person is known to have:
Many APS patients will be on lifelong warfarin and, unfortunately, warfarin reacts with nearly all medicines. Taking other medication as well as warfarin is not a problem, but your INR levels are likely to be affected when you either start or stop other medicines.
Paracetamol and codeine can be taken safely with warfarin for pain relief, although these can affect INR control if taken for long periods. Ibuprofen and aspirin should be avoided as they can cause bleeding, although aspirin can be prescribed by your doctor in certain circumstances.
There is an extremely long list of medications which can interact with warfarin, most notably, antibiotics, non-steroidal anti-inflammatory drugs (NSAIDs), anti-depressants, glucosamine, indigestion medicine such as omeprazole, prednisolone and barbiturates. The safest way to check whether there are any drug interactions with warfarin is to ask your doctor or pharmacist, and to read the patient information leaflet that comes with your medicine.
Some medication may cause your INR level to rise, while others will make it decrease; therefore, you should be monitored more closely when you start or stop another medicine to make sure you are reaching your target INR.
Oral contraception, known colloquially as the pill, is the most popular form of birth control. However, the ‘normal’ combined pill contains both oestrogen and progestin hormones; oestrogen appears to increase the risk of blood clots: not by forming the clots themselves, but by making the blood more likely to clot.
Therefore, it is recommended that women with APS should only be prescribed the progestogen-only pill, also known as the mini-pill. The mini-pill is very slightly less effective than the combined pill (it is as safe as the coil) because it only contains one hormone; however, over 100,000 women in the UK take it because the health risks are far less than those of the combined pill. It is also now widely reported that the latest mini-pill, Cerazette, has virtually the same effectiveness as the combined pill.
If you find it difficult to take tablets or you have a job which entails shift work where it is not feasible to take tablets at a set time, then you may also consider progesterone-only injections such as Depo-Provera. This is an injection given every twelve weeks which suppresses ovulation. It has a high efficiency rate and is reversible after six months.
The progesterone-only contraceptive implant is also another option. The implant is inserted under the skin of your upper arm, lasts for three years and is more than 99% effective. In the UK, Nexplanon is the main contraceptive implant currently in use.
If you are taking warfarin, it is important that you make sure there a no contra-indications with the type of contraception your GP prescribes otherwise your INR can be affected.
HRT is regularly prescribed to women suffering from the effects of the menopause. However, research has shown that menopausal women who use oral HRT more than double their risk of blood clots in the veins, so it is not recommended that women with APS use any form of HRT.
All types of HRT contain an oestrogen hormone which replaces the oestrogen that your ovaries no longer produce after the menopause. HRT is available as tablets, skin patches, gels, nasal spray or implants. Some studies suggest that the risk of blood clots is lower if the HRT patches are used rather than tablets taken by mouth, but more research is needed to confirm this.
There are treatments other than HRT available for menopausal symptoms. They are not generally as effective as HRT, but may help relieve some symptoms – please see Patient UK’s webpage Menopause - Alternatives to HRT for further details.
Most women who are taking anticoagulants such as aspirin or warfarin experience problems with increased blood loss when they have their period. It can be so excessive, not only is it extremely inconvenient and uncomfortable, it can also cause anaemia. If you are not trying to get pregnant, one very effective solution to this problem is to ask for a Mirena coil to be fitted at your clinic. Once inserted, it releases levonorgestrel (a synthetic form of the female sex hormone progesterone) into the womb which prevents the lining from thickening, thereby reducing the loss of blood each month.
Most patients with APS will find they suffer with fatigue at some point. Fortunately, the fatigue does not tend to be constant and many people find they have good and bad days.
Fatigue is characterised by a lack of energy and motivation. Unlike drowsiness, which is your body’s signal that you need sleep, fatigue is often accompanied by a general feeling of ‘heaviness’ or muscle aches and pains; it can affect you mentally as well as physically and can sometimes feel overwhelming.
While almost everybody experiences tiredness throughout the day, fatigue caused by APS is more extreme, can cause complete exhaustion, does not go away with sleep or rest and can limit your usual activities.
Although there is no cure for fatigue there are several measures you can take to help combat it:
Many people with APS will have some degree of memory loss and difficulty in thinking clearly; the sensation has been described as ‘brain fog’.
Memory loss can range from mild, such as difficulty finding words and absent-minded forgetfulness, to severe when people forget entire events such as meetings or well-travelled routes.
Living with short-term memory problems is a constant and very real challenge. Fortunately, there are a number of memory aids, strategies and safeguards you can employ to help you manage day-to-day.
Life with APS can be as difficult mentally as it can be physically, and coping with the psychological consequences of the condition can be tough.
Due to the unpredictable nature and potentially serious complications of APS, you may be left feeling shocked, angry, depressed and frustrated. The physical symptoms often come on suddenly and can be frightening in the extreme; this can leave some people anxious with fear and worry which can manifest in either panic or depression.
The first step to dealing with this type of stress is to give yourself time to accept that you have a long-term condition and make the necessary adjustments to your lifestyle; for some people this can be quite painless but, for most, it will take a year or so to come to terms with their diagnosis.
As you are dealing with something that is effectively beyond your control, it is beneficial to develop coping strategies to manage the associated stress. People respond differently so you will need to find the best method for you, but Cognitive Behaviour Therapy (CBT) has proven beneficial for many people with long term conditions.
CBT is a form of talking therapy that can help people feel better in themselves and adjust to their diagnosis of APS. It is a treatment that supports a self-management approach to coping with a medical condition, and uses tried and tested methods to steer away from negative patterns of thinking and change your coping behaviour. CBT has been found to be one of the most effective treatments for conditions where anxiety, frustration and depression are significant problems.
If you think you would benefit from CBT, ask your GP or consultant to refer you to someone trained in CBT. The British Association for Behavioural and Cognitive Psychotherapies have a register of accredited CBT therapists. CBT courses tend to be short, taking between six weeks to six months. You will usually attend a session once a week, each session lasting either fifty minutes or an hour.
If CBT is not for you, there are other strategies you can adopt to manage the triggers of stress or depression including:
As APS is not always widely known, you may really benefit from connecting with others who are experiencing situations and feelings that are similar to yours, rather than battling to make yourself understood with family or friends. Also, getting to talk about your experience in a welcoming environment can help a lot.
Finally, although it can be difficult to stay optimistic when you have a chronic condition, especially if you are continually experiencing unpleasant symptoms, staying positive can really help your outlook and help you deal with the stress and anxiety.
Unlike travel insurance where a variety of different companies are prepared to offer insurance to people with APS, it can be very difficult to find a life insurance company prepared to offer you an insurance policy if you have antiphospholipid syndrome.
Following an article published in the City Wire in 2007, the entire insurance industry became unwilling to take a risk and offer a policy to a person with antiphospholipid syndrome, mainly because there is not enough evidence of the nature and outcome of the condition; therefore it was classed as unknown and too high risk.
This blanket ban seemed extremely unfair given that most patients are well-managed, capable of working and paying taxes, having families and taking out mortgages. It can make life difficult when trying to get a mortgage, and also means that many people would be unable to look after their families financially if they did have a clotting event.
We are aware of only one independent broker, NLP Financial Management, that has successfully secured insurance policies for a number of patients with APS.
NLP FM is an independent whole of market company that works with all leading insurance providers. They work closely with many clients with complex health issues and, therefore, have the experience to know which underwriter to approach with specific conditions, this includes conditions associated with antiphospholipid syndrome.
While there is no guarantee a policy will be offered as every case will have to be assessed on its own merit, please do contact Ed Froggatt at NLP for further information.
Sadly, until the body of APS evidence regarding the average life span, number of thrombotic events and their severity per person has been well-documented, it does not appear that the industry-wide blanket ban will be lifted. However, please do let us know if you do find any company that offers you life insurance, as this would be very helpful for other patients.
Many APS patients are concerned about their safety to drive and whether they need to declare their condition to the Driver and Vehicle Licensing Agency (DVLA).
Despite the DVLA listing a vast number of health conditions thet you have to declare, antiphospholipid syndrome is not included. We contacted the DVLA in May 2012 and asked if they had any guidelines for APS, but are still waiting to hear from them. So, in the meantime, we have listed here the possible conditions the DVLA recognises which can arise from having APS and what you need to do:
Please remember that the law requires you to tell the DVLA about any condition that may affect your ability to drive safely. If you are involved in an accident and it is found that your health condition was a contributing factor, you may be prosecuted and your insurance may not be valid.
If you hold any type of vehicle licence, you will not need to tell the DVLA that you have had a blood clot in the limbs (Deep Vein Thrombosis) or lung (Pulmonary Embolism).
If you hold any type of vehicle licence, you will need to tell the DVLA that you have cognitive problems. Please visit the GOV.UK website and download the questionnaire FEP1.
If you hold any type of vehicle licence, you will need to tell the DVLA that you suffer from dizziness or giddiness. Please visit the GOV.UK website and download the questionnaire FEP1.
If you have a car or motorcycle licence, you will not need to tell the DVLA you have had a heart attack. However, you should stop driving for at least one month and only restart when your doctor tells you it is safe to do so. Anyone with a bus, coach or lorry licence will automatically have to inform the DVLA.
If you have a car or motorcycle licence, you will not need to tell the DVLA you have heart valve problems. Anyone with a bus, coach or lorry licence will automatically have to inform the DVLA.
If you have a car or motorcycle licence, you will not need to tell the DVLA you have kidney problems. Anyone with a bus, coach or lorry licence will automatically have to inform the DVLA.
If you hold any type of vehicle licence, you will need to tell the DVLA that you suffer from severe memory problems. Please visit the GOV.UK website and download the questionnaire FEP1.
If you have experienced seizures, you will need to let the DVLA know – this applies to all licence holders. Please visit the GOV.UK website and download the questionnaire FEP1.
If you have a car or motorcycle licence and are not suffering from any residual problems after a month from having your stroke, you will not need to tell the DVLA about your medical condition. However, if you are still experiencing problems, then you will need to let them know. Please visit the GOV.UK website and download questionnaire STR1. Anyone with a bus, coach or lorry licence will automatically have to inform the DVLA.
If you have a car or motorcycle licence, you will not need to tell the DVLA that you have had a TIA. However, you should stop driving for at least one month and only restart when your doctor tells you it is safe to do so. Anyone with a bus, coach or lorry licence will automatically have to inform the DVLA.
We have provided the following free fact sheets about different aspects of APS for you to either download, print or share.
In this section of our website, patients bravely share their stories to help our understanding of APS.
© 2017 APS Support UK (trading name of the Hughes Syndrome Foundation). Registered Charity Number 1138116. A company limited by guarantee registered in England 7268671.