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Further information Anticoagulation UK is committed to the prevention of thrombosis and to providing information and support to help people maintain their quality of life whilst on anticoagulant or antiplatelet therapy. For more information please contact us, see below for details. Anticoagulation UK Ace house, 2 Appledore close, bromley, br2 9bZ telephone: 020 8289 6875 email: info@anticoagulationuk.org Web: www.anticoagulationuk.org Follow us on twitter: @anticoaguk ACUK is a registered charity and relies on membership donations and sponsorship to continue its work. To make a donation please send a cheque or postal order to the address above, or you can donate online at our website. Living with Warfarin Registered charity number: 1090250 January 2019

Warfarin Tablets Warfarin tablets in the UK are colour coded to help you take the correct dose. PINK 5mg BLUE 3mg They are available in 5mg (pink), 3mg (blue), 1mg (light brown) and 0.5mg (white). You should remember what dose you are taking and not just the colour. LIGHT BROWN 1mg WHITE 0.5mg Keep your warfarin tablets in a safe dry place out of reach of children. It is not advisable to store them in a bathroom cabinet or near the kettle in the kitchen because steam and damp will make them deteriorate. Always take your warfarin tablets at the same time each day. Swallow your tablets whole, do not crush or chew them. Tell your doctor or nurse if you have diffi culty in swallowing your tablets. If you miss a dose try to take your tablets shortly afterwards. Never take a double dose. Phone your clinic or GP for advice if you know you have completely missed a dose or if you have taken too many tablets.

How does warfarin work? Warfarin stops your blood from clotting inside your blood vessels. It is also used to stop existing clots getting bigger as in deep vein thrombosis (DVT) and to stop parts of a clot breaking off and travelling to the lungs, as in pulmonary embolism (PE). You may hear warfarin referred to as a blood thinner, although that is not what it does. The blood is not actually made any thinner, it just takes longer to clot whilst you are taking anticoagulants because warfarin is a vitamin K antagonist. This means it slows down the production of vitamin K (which helps your blood to clot) in your liver thus making your blood take longer to clot. How will my treatment be monitored? Treatment with warfarin is safe as long as you follow the advice of your anticoagulant clinic or GP. You will need to have your blood tested at regular intervals. This may be at an anticoagulant clinic at the hospital, at your doctors surgery, at your local pharmacy or at home by self-monitoring. If you want to self-monitor you should discuss this with your current provider of your anticoagulant service. ACE supports this concept and can provide advice and put you in touch with someone who has experience of self-monitoring. The national Institute for Health and Care Excellence has recommended self-monitoring for people with replacement valves and for those with atrial fibrillation. The reading obtained by testing the blood is called your INR (International Normalised Ratio). Your INR reading may vary but it will need to be kept within a certain range depending on the reason why you are taking warfarin. This is called your therapeutic range and will be decided by your GP or consultant. Conditions for which warfarin is prescribed 1. Atrial Fibrillation (AF) This is a condition in which the collecting chambers of the heart (the atria) fail to beat normally. Instead they fibrillate, making repetitive fine twitching movements that do not propel the blood forwards into the pumping chambers (the ventricles). 2.8 As a result, the normal co-ordination of the heart beat (with the atria contracting first and then the ventricles) is lost. The ventricles beat irregularly, making your pulse feel irregular.

People often describe this as feeling like their heart is beating faster than normal and at irregular intervals. The lack of normal contraction in the atria means that there is a degree of blood stagnation (pooling at the bottom of the chamber). This increases the risk of blood clots forming in the atria. Such blood clots are usually firmly attached to the wall of the atrium, but there is always a risk that they may break off, travel to another part of the body (embolism) and cause severe damage (e.g. a stroke if the clot travels to the brain). Warfarin is needed for as long as the atrial fibrillation persists, which may be for life. Sometimes the atrial fibrillation can be converted back to a normal rhythm with drugs, cardioversion (electrical therapy), catheter treatment or surgery. You should discuss this with your doctor. Warfarin does not cure your atrial fibrillation but will help reduce the risk of a stroke. 2. ArtiFiciAl heart valve (Avr or Mvr) If you have had one or more of your heartvalves replaced with a mechanical valve (prosthetic), you will need warfarin for life to prevent clots forming on or near the valve. Such blood clots can interfere with the function of the valve or break off and travel to the brain, causing a stroke. It is therefore very important to take your warfarin every day as prescribed. If another doctor suggests that you stop taking warfarin for any reason (e.g. if you need a non-cardiac operation), it is important to check with your cardiac consultant first. For minor operations (including dental extractions) and for some operations, it may not be necessary to stop warfarin. Sometimes you may be asked to reduce your INR level. Always check first before allowing anyone to stop your warfarin. Remember, it is your valve and your life that may be at risk. You may have been given a tissue valve also known as a bioprosthesis. If the rhythm of your heart valve is normal, you will probably only need to take warfarin for the first three months after your operation, until the sewing ring of the valve has healed and become largely covered with the body s own tissue. You should be told how long you will need to take warfarin. If not, do not hesitate to ask when you can safely stop taking warfarin.

3. DeeP vein thrombosis (Dvt) This is where a clot lodges in one of the larger veins of a leg or arm. The presence of a clot may produce pain and swelling of the affected area, however some people may have no recognisable symptoms. The clot may take some time to disperse, so warfarin is given to stop the clot getting bigger. Warfarin is also used to prevent small clots breaking off, travelling in the circulation, and lodging in places such as the lungs. Treatment is usually given for between three and six months. If you have more than one DVT, or have other risk factors, you may need to take warfarin for life. 4. PUlMonArY embolism (Pe) This is where a clot obstructs the blood supply to the lungs. Its presence may cause chest pain or breathlessness. Most of these clots form in the legs or pelvis and then break off and travel in the circulation until they lodge in the lungs. 5. heart AttAcK (MYocArDiAl infarction) or ischaemic heart DiSeASe Any narrowing or blockage of the vessels that supply the heart may cause irreversible damage to the heart muscle. Warfarin may be given to prevent a blood clot forming within the heart and to allow better blood flow through the arteries that supply the heart. The treatment may be for a short-term or for life. This depends on your condition and will be decided by your clinician. 6. Prevention of blood clots Certain groups of people have a particular tendency to form clots. This can be inherited, or be a result of some other condition. In these circumstances, warfarin is given to prevent the formation of clots. The consultant, haematologist or GP who started your treatment will tell you how long you will need to keep taking warfarin. This condition is a complication of a deep vein thrombosis. Treatment is normally for six months, but as with a DVT it may be for life. A pulmonary embolism is a serious condition and can be life threatening. If you think you may have a PE urgent medical treatment is required.

Side Effects The most common warfarin side effects are bleeding and bruising. These side effects can take the form of prolonged bleeding from cuts; bleeding that does not stop by itself; nose bleeds; small or large bruises under the skin; bleeding gums when brushing the teeth; red or dark brown urine; red or black stools; or coughing or vomiting blood stained fluid. All of these side effects should be reported to your clinic or GP. If your next appointment is not for some time please phone them. If you experience other side effects tell your clinic or GP. Do not stop taking warfarin without advice from your clinician. In the event of prolonged bleeding, inform your GP or go to the nearest casualty department for urgent treatment. What else should I know? If you are ill and are unable to eat properly or if you suffer from a period of diarrhoea and sickness this may affect the way your body absorbs the warfarin. This may mean that your INR level will alter and you may go out of your therapeutic range. Contact your clinic or GP if symptoms persist beyond two or three days as they may need to test your INR. Even if you are able to resume normal eating habits after a couple of days do not forget to tell your clinic next time you go. Other Medications It is important to continue taking all medications that have been prescribed for you by your consultant or GP. Some drugs affect how warfarin works. If your doctor prescribes any new medication, please ask them whether it may interfere with warfarin. If it does, then contact your anticoagulant clinic and tell them about your new medicine. Antibiotics in particular often cause problems with INR readings. If you are prescribed antibiotics, you should inform your clinic as soon as possible - they may want you to attend earlier than usual for a blood test. Also contact them if you are stopping a drug that is known to affect warfarin.

A list of some of the food and drugs that may affect your warfarin therapy can be found on our website under publications or send a large envelope with two first class stamps to AntiCoagulation Europe at the address on the back page of this leaflet. No list can be comprehensive, so contact your INR clinic if there is any possibility that a change in medication may alter your INR. Avoid all aspirin-based drugs, including non-steroidal anti-inflammatory preparations such as ibuprofen unless prescribed by your doctor. These may be referred to as NSAIDS. Paracetamol can be taken safely with warfarin for pain, although they can affect INR control if taken for prolonged periods. Aspirin can only be taken if your doctor has advised you to take it. Vitamins and Herbal Supplements Most vitamins and supplements have the potential to interact with warfarin. This does not necessarily mean that you cannot take them. Always seek advice from a pharmacist about possible interactions before purchasing any over the counter medicines, food or health supplements (this includes creams and ointments). Remember that even common over the counter medicines such as cold remedies and cough medicine may interact with warfarin. Some may contain aspirin. Always tell your pharmacist that you are taking warfarin and check anything that you intend to buy with them. If you wish to take vitamins or supplements tell your clinic when you are going to start taking them as they may want to monitor your INR levels more frequently for a while. Also tell them if you stop taking them. How warfarin will affect your lifestyle? Diet There are virtually no dietary restrictions while you are on warfarin, as long as you eat a healthy well balanced diet and avoid strict diets or crash dieting. Also avoid dramatic changes in the amount and type of food you eat, particularly green vegetables and liver products. You should not drink cranberry juice as this has been shown to reduce INR levels in some people and increase INR levels for others. It is also advisable not to drink grapefruit juice as this may affect absorption of some drugs.

Alcohol Alcohol may affect your INR reading. But drinking in moderation may do you some good. Moderation is normally defined as up to two units a day. Half a pint of beer or a small glass of wine or one measure of spirit is one unit. Binge drinking or a sudden increase or decrease in the amount of alcohol you drink may alter your INR levels. Remember it may be a combination of eating and drinking that will affect you. Travel It is advisable to have your INR checked before any overseas travel, so you can be sure of the correct dose whilst away from home. You may also need to have your INR checked while you are abroad, depending on the length of time you intend to be away. Please ensure that you have valid medical insurance for your trip. You must tell your insurance company about the conditions you suffer from and also that you are taking warfarin (receiving anticoagulant therapy). Adequate travel insurance when you have a medical condition, and are on warfarin is, almost always, going to cost more than normal. But it may literally save your life if you need emergency treatment abroad. It is always advisable to get two or three quotes and always read the small print. Make sure you have any Government health cards, such as the European Health Insurance Card. Remember to pack sufficient quantities of your tablets for the length of your stay. It is advisable to take two packs, one in your main luggage and one in your hand luggage. Don t forget that temperatures may be different when you travel abroad so always look at the patient information leaflet of your medication for storage instructions. Remember to take your yellow book or other information card. If you have a smart phone you may want to consider using an App that lets you record your INR, set daily dosage reminders and keep your clinic appointment dates. Visit www.oatbook.co.uk Travel insurance When you take out travel insurance you must check that it will cover your specific condition. Declare all your past and present health conditions. Making a mistake or omission could result in a claim being refused. For travel in Europe, make sure you have a European Health Insurance Card (EHIC). This entitles you to reduced-cost and sometimes free medical treatment. Take out travel insurance as well because an EHIC may not cover all the costs of your treatment. An EHIC will not cover the cost of being flown back to the UK.

DentAl SUrGerY You should tell your dentist that you are taking warfarin and also any other medication, including ones that you have bought yourself over the counter, so that it can be added to your dental records. If you require a dental check up or small filling, then you may need to take no action with regard to your warfarin. If you require a tooth extraction, then please contact your clinic for advice as you may need a warfarin test before your appointment. If possible get in touch with the clinic at least a week in advance of the extraction, telling them the date of the treatment, so that if it is necessary they can adjust your warfarin level. Do not let a dentist remove your tooth without knowing your INR level. Your dentist may give instructions themselves or may contact your clinic directly. It is not usually necessary to stop taking warfarin for a dental extraction. It is important that you have good dental hygiene so make sure that you have regular check ups with your dentist and the dental hygienist. remember: If you are given a yellow book, or other information pack, try to carry it with you at all times. If you fi nd this is inconvenient, or you forget it, you may want to have some other means of identifying to others that you are on warfarin. In an emergency it can be vital that a doctor or paramedic knows you are on warfarin, and remember you may not always be conscious or able to tell them. Always tell the pharmacist (chemist) that you are taking warfarin when buying any over the counter preparation, even something that you think may be harmless, such as cough medicine. Always tell the dentist that you are taking warfarin. Never stop taking warfarin unless you have consulted your clinic, consultant or GP. If you have prolonged or serious bleeding and cannot contact your clinic or GP go to the accident and emergency department at your nearest hospital. If you are in doubt about anything do not be afraid to ask questions.

Notes Anticoagulation UK... Publishes regular email newsletters, with up to date information, helpful articles and advice, patient stories, the latest clinical evidence and much more. Anticoagulation UK 2018 ISSUE 59 The Ne WSLe TTe R for peopl e TAKi Ng ANTicoA g ULANT T herapy LumiraDx Care SolutionS LumiraDx Care Solutions has won the Best Digital Innovation in Healthcare category at the 2018 Cornwall Live EDGE Page 2 What is it Like to be a Patient representative for acuk? In June and September this year, Anticoagulation UK was asked to provide a patient representative to be involved in the review committees has a comprehensive website www.anticoagulationuk.org Provides information booklets For a full list please write or email to the address on the back page of this booklet. Leaflets can also be read or downloaded on line. ImPlemenTATIOn OF A STAndARdISed AnTICOAgUlATIOn RevIew In PRImARy CARe Membership is 10.00 per year, you can join or renew on line or by sending a cheque made payable to Anticoagulation UK to the address on the back page. AcUK is a registered charity (1090250) and relies on membership, sponsorship and donations to continue our work. You can donate on line or by sending a cheque or postal order made payable to Anticoagulation UK. You can also donate from your mobile phone. Text ACED44 3 to 70070. Shop on line and raise funds at no cost to you by going to www.giveasyoulive.co.uk and then follow instructions. You may need to type Anticoagulation UK as your charity to support. for a grants process led by a large pharmaceutical firm. These grants were for Improving Patient Care in Anticoagulation and Improving Care of Patients with Atrial Fibrillation in Order to Reduce Stroke Risk. Page 3 Direct oral anticoagulants (DOACs) are now recommended by NICE as alternatives to warfarin for stroke prevention in non-valvular atrial fibrillation (NVAF) and for the treatment/prevention of venous thromboembolism (VTE) (NICE CG180 and QS29). The DOACs, compared to warfarin, have a number of advantages such as, a lower risk of life-threatening bleeding, less interactions with food/medication and a lack of INR monitoring (Hicks et al. 2016). As a result, the DOACs are now often used over warfarin as first line treatment. In addition, a significant number of patients are being switched from warfarin to DOACs. Patients with a time in therapeutic range (TTR) of <50% are at high risk of harm by taking warfarin (Abdou, J. K et al. 2015). NICE suggests that patients taking warfarin should aim to have a TTR of >65% to be getting to the optimum use from the warfarin therapy (NICE CG180). Other studies have suggested higher TTR targets (Kılıç et al. 2017). For many patients this is hard to achieve and treatment with a DOAC may be more appropriate. Anticoagulation UK 2018 ISSUE 59 The Ne WSLe TTe R for peopl e TAKi Ng ANTicoA g ULANT T herapy LumiraDx Care SolutionS LumiraDx Care Solutions has won the Best Digital Innovation in Healthcare category at the 2018 Cornwall Live EDGE Page 2 ImPlemenTATIOn OF A STAndARdISed AnTICOAgUlATIOn RevIew In PRImARy CARe What is it Like to be a Patient representative for acuk? In June and September this year, Anticoagulation UK was asked to provide a patient representative to be involved in the review committees for a grants process led by a large pharmaceutical firm. These grants were for Improving Patient Care in Anticoagulation and Improving Care of Patients with Atrial Fibrillation in Order to Reduce Stroke Risk. Page 3 Page 4 Direct oral anticoagulants (DOACs) are now recommended by NICE as alternatives to warfarin for stroke prevention in non-valvular atrial fibrillation (NVAF) and for the treatment/prevention of venous thromboembolism (VTE) (NICE CG180 and QS29). The DOACs, compared to warfarin, have a number of advantages such as, a lower risk of life-threatening bleeding, less interactions with food/medication and a lack of INR monitoring (Hicks et al. 2016). As a result, the DOACs are now often used over warfarin as first line treatment. In addition, a significant number of patients are being switched from warfarin to DOACs. Patients with a time in therapeutic range (TTR) of <50% are at high risk of harm by taking warfarin (Abdou, J. K et al. 2015). NICE suggests that patients taking warfarin should aim to have a TTR of >65% to be getting to the optimum use from the warfarin therapy (NICE CG180). Other studies have suggested higher TTR targets (Kılıç et al. 2017). For many patients this is hard to achieve and treatment with a DOAC may be more appropriate. Page 4