Living with APS
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:
- Stopping smoking
- Women’s health
- Coping with fatigue
- Managing memory problems
- Dealing with stress
- Life insurance
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 joint pain 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:
- mefenamic acid
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:
- An allergy to heparin
- A bacterial infection of the heart valves and lining (bacterial endocarditis)
- Major bleeding
- Conditions with a high risk of uncontrolled bleeding such as haemophilia
- An active peptic ulcer
- Reduced platelet count
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 progestogen hormones; oestrogen increases the risk of blood clots: not by forming the clots themselves, but by making the blood more sticky.
Therefore, it is recommended that women with antiphospholipid antibodies and antiphospholipid syndrome (APS) should not use the 'combined pill' but can use any of the following:
- The progestogen-only pill, known as the mini-pill. The progestogen-only pill must be taken daily: missing a tablet does increase the risk of getting pregnant.
- Progestogen-only injections such as Depo-Provera. This lasts 8-12 weeks depending on which injection you have. You can read more about Depo-Provera on the NHS website.
- Barrier methods such as condoms and the cap.
- The Mirena Coil is particularly suitable for women with heavy periods especially those on anticoagulation as it produces a hormone which reduces the length and size of periods.
None of these usually interfere with INR and warfarin monitoring.
Hormone Replacement Therapy (HRT)
All types of HRT contain an oestrogen hormone which replaces the oestrogen that ovaries no longer produce after the menopause.
HRT is regularly prescribed to women suffering from the effects of the menopause. However, oral (tablet) HRT more than double the risk of blood clots in the veins, so it is not recommended that women with APS use this form of HRT.
HRT is also available as skin patches which do not make the blood as sticky, so are an option for women with APS.
Lastly there is a tablet called clonidine that is not a hormone at all, that is used in low doses to deal with hot flushes.
Most women who are taking antithrombotics such as aspirin or warfarin and, especially, the direct oral anticoagulants such as rivaroxaban experience problems with increased bleeding. Heavy blood loss can be extremely inconvenient and uncomfortable, it can also cause iron deficiency anaemia. If you are not trying to get pregnant and don't have fibroids, 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.
Coping with fatigue
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:
- Take 200-400g hydroxychloroquine daily. This drug has long been used to treat fatigue and joint pain in autoimmune conditions such as arthritis and lupus, and is now becoming recognised as an important medicine for APS too. This will need to be prescribed by your GP, and it is also very important to have a hydroxychloroquine retinopathy eye test once a year as long-term use (over five years) of this drug can sometimes damage the retina.
- Drink plenty of water. Dehydration can cause fatigue as your body lacks one of its most essential nutrients.
- Maintain a healthy balanced diet with plenty of fresh vegetables and fruit.
- Take vitamin and iron supplements. Sometimes people are low in essential vitamins and iron despite having a healthy diet, so try taking a daily all-round vitamin, mineral and iron supplement to combat your fatigue.
- Keep to an exercise programme. Regular gentle exercise has been shown to be very beneficial in combating fatigue. You should start by aiming to walk for about twenty minutes three times a week, and then increase this slowly if you feel strong enough.
- Pace yourself. It is important that you listen to your body and create strategies so your energy levels are not depleted too much. One of the dangers is that when you feel well, you will push yourself too much only to find that you are soon suffering fatigue again. Try to incorporate these pacing techniques into your lifestyle if possible:
- Know your body
- Do activities in short periods of time
- Schedule rest time
- Try and have routines
- Prioritise on what really needs to be done
- Switch tasks if you feel you are getting nowhere
Managing memory problems
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.
- Memory aids. These are tools such as white/cork/notice boards, post-it notes, notebooks, memos, calendars, address books, electronic reminders in your computer/mobile phone/blackberry/iphone that help you organise tasks, remember birthdays, anniversaries and appointments. Try to get into a routine of using a memory aid which suits you and stick to that, so you don’t have various bits of information in different places.
- Strategies. These are techniques which help your memory by using visual and/or auditory senses such as picturing a diagram/image or repeating key information aloud; making associations, for example, that Italy is shaped like a boot; focusing on one thing at a time, for example, before leaving a car park deliberately fix the location of the car in your mind; and mnemonic devices where you remember information by categories, rhymes or location such as the rhyme to remember the colours of the rainbow, Richard Of York Gave Battle In Vain.
- Safeguards. In addition to easing the burden on your memory by being organised, forming habits and working at remembering, it helps to keep your brain cells active as this may help prevent deterioration due to disuse. Activities which are good for the brain include keeping busy, staying physically fit, socialising, reducing stress, getting enough sleep, eating a balanced healthy diet. As memory involves concentration and organisation skills try playing mind-challenging games like chess and bridge, and solve puzzles such as crosswords and sudoku. It is also important to stimulate the brain so seek out new activities, adventures, concepts or hobbies.
Dealing with stress
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:
- Relaxation techniques such as meditation and breathing exercises.
- Dealing with practical or emotional issues as they develop, rather than letting them fester or weigh you down. If you take steps to take control, no matter how small, this empowerment alone will start to make you feel better.
- Following a healthy lifestyle with a balanced diet and daily exercise. Exercise can be a great stress reliever in itself, as it helps you let off steam and releases endorphins – it’s amazing the benefits a simple walk can have. Plenty of rest and sleep is also vital to coping with stress.
- Take time out to relax or do something you enjoy.
- Join an online support group.
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 wide variety of different companies are now prepared to offer insurance to people with APS, it can be very difficult to find an insurance company prepared to offer you a life insurance policy if you have antiphospholipid syndrome.
Unfortunately, most of the insurance industry is currently 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 is classed as 'unknown' and too high risk.
This stance seems 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.
As far as we are aware, there is only one independent broker, NLP Financial Management, who has successfully secured insurance policies for a number of patients with APS.
NLP 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.
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 that 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:
- Blood clots
- Cognitive problems
- Heart attack
- Heart valve problems
- Kidney problems
- Memory problems (severe)
- Transient Ischaemic Attack (TIA)
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.
Blood clots and driving
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).
Cognitive problems and driving.
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.
Dizziness and driving
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.
Heart attack and driving.
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.
Heart valve disease and driving
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.
Kidney problems and driving
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.
Memory problems (severe) and driving
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.
Seizures and driving
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.
Stroke and driving
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.
Transient Ischaemic Attacks (TIAs) and driving
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.