Treating your Deep Vein Thrombosis and Pulmonary Embolism with. Useful information and self-help guide. This leaflet has been produced by LEO Pharma
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1 Treating your Deep Vein Thrombosis and Pulmonary Embolism with Useful information and self-help guide This leaflet has been produced by LEO Pharma
2 Contents Useful information Useful information 3 Introduction 4 Deep Vein Thrombosis (DVT ) 5 Who is at risk of a DVT? 6 Pulmonary Embolism (PE) 7 How are DVTs and PEs diagnosed? 8 How are DVTs and PEs treated? 8 Important facts about innohep 10 Before using innohep 10 Handling the innohep syringe 11 How should I use innohep? 12 Disposing of the innohep syringe 13 What are the possible problems or side effects 14 associated with innohep? Post-thrombotic syndrome 15 Important points to remember 16 After-care and self-help 17 How can I prevent a DVT? 18 DVTs and travelling 18 Avoiding a DVT whilst flying 19 Useful terms 20 My innohep injection and appointment diary 22 Notes 23 Your name: Medication and once daily dose: 0.4 ml syringe 0.5 ml syringe 0.6 ml syringe 0.7 ml syringe 0.8 ml syringe 0.9 ml syringe 2 ml vial Your nurse: Your doctor: Clinic telephone number: Note: innohep 20,000 IU/ml vial should not be given to pregnant women as it contains the preservative benzyl alcohol, which may cross the placenta. The innohep 20,000 IU/ml syringes do not contain this ingredient. Don t forget to carry your Medical Alert Card at all times 2 3
3 Introduction You have been given this booklet because your doctor has prescribed innohep for the treatment of deep vein thrombosis (DVT) or pulmonary embolism (PE). Deep Vein Thrombosis (DVT) Deep vein thrombosis is a condition that occurs when blood clots form in deep veins, usually in the legs. If a vein becomes damaged or if the flow of blood slows down, a clot can develop. This can often cause symptoms such as redness and swelling of the leg. DVTs and PEs This booklet aims to give you an overview of deep vein thrombosis (DVT) and pulmonary embolism (PE). It will explain what they are, how they occur and the treatment you can expect to receive, as well as the steps you can take to give your treatment the best chance of success. Before starting your treatment, it is important that you read the package leaflet in your pack and ask your doctor, pharmacist or nurse if you are unsure of anything. This leaflet provides additional information you might find helpful. There is a lot of useful information available and a list of places where you can find further help. This can be found at the back of this booklet in the useful links section on page 24. Signs and symptoms of a DVT can include: Swelling of the leg or calf. Pain that may be worse when standing or walking. Warmth and redness of the leg. Sometimes there are no symptoms and a DVT is only diagnosed when a complication occurs. Your Healthcare Professional will advise you on all the signs and symptoms of a DVT, and what to do if you see them. Obstructed vein Blood flow Blood flow Blood flow DVT and PE visuals copyright Lesmar 4 5
4 Who is at risk of a DVT?* Pulmonary Embolism (PE) Some people are more likely than others to develop a blood clot: People undergoing a surgical operation. Your legs are still when you are under anaesthetic and the flow of blood in the leg veins can become very slow. The tissue damage caused during surgery will also cause the blood to clot more easily. The elderly are more likely to have a DVT, particularly if they have poor mobility. People with certain blood disorders. Women who take oral contraceptives ( the pill ) or hormone replacement therapy (HRT) that contain oestrogen have a small increased risk of DVT. People with a history of thrombosis. Diabetics. Obese people. Pregnant women. Cancer patients, especially those receiving chemotherapy. Smokers. What is a PE? Pulmonary embolism is a condition when a blood clot blocks one of the main arteries in the lung or one of its branches. Pulmonary embolism often results from deep vein thrombosis, but can also develop independently. How does a PE occur? Blood flow Blood clots can form in various veins of the body, for example in a deep vein of the leg. Sometimes a blood clot can break off from the main clot; this is known as an embolus. This embolus can move with the blood around the body and become lodged in one of the blood vessels in the lungs where it can affect the flow of oxygen and blood through the body. Signs and symptoms of a PE can include: Sometimes there are no symptoms... but many people may feel some or all of these symptoms: Sudden breathlessness that cannot be explained. Sudden, sharp chest pain. Coughing up blood mixed with phlegm. Blood flow DVT and PE visuals copyright Lesmar 6 * Venous thromboembolism: reducing the risk. NICE Clinical Guideline 92. January Your Healthcare Professional will advise you on all the signs and symptoms of a PE, and what to do if you see them. 7
5 How is a DVT diagnosed? You may undergo the following tests: D-dimer blood test Ultrasound Plethysmography Venogram An explanation for each of these tests can be found in the Useful terms section on pages How is a PE diagnosed? Chest x-ray Lung scan (VQ Scan) CT or Spiral CT scan Pulmonary Angiogram An explanation for each of these tests can be found in the Useful terms section on pages How are DVTs and PEs treated? The most common treatment is called an anticoagulant. Anticoagulants are sometimes referred to as blood thinners although they do not thin the blood. These medicines can stop new blood clots from forming and old ones growing larger, but they can t dissolve existing clots. The body does this itself over time. There are different types of anticoagulants including low molecular-weight heparins (LMWHs) and warfarin. You have been prescribed a LMWH called innohep (tinzaparin sodium). At the same time you are receiving innohep you may start taking warfarin tablets. Each person responds differently to this medication and your dose may need to be changed to suit your needs. Regular blood samples will be taken and tested. A record of your test results will be noted in the yellow book that will be given to you when you start taking warfarin (hospitals may have a different way to record your results). You may need to have blood tests quite often at first, but then less frequently once the correct dose is found. If you have a DVT or PE, it is likely that you will be taking warfarin for three to six months, or longer, but the duration will be decided by your doctor. Your Healthcare Professional may also prescribe or recommend you wear anti-embolic stockings. The aims of treating your DVT and PE with innohep are to prevent: The clot becoming larger The clot breaking off and travelling to the lungs; this is called a pulmonary embolism New clots from forming Important: Many other medications can alter the effects of warfarin. Remember to check with your Healthcare Professional before starting any new medicine. innohep is given as an injection just under the skin once a day and is usually given for at least 6 days. Your doctor will decide how long and how much medication you will need. 8 9
6 Important facts about innohep Handling the innohep syringe innohep should be stored at room temperature. Do not store above 25 C and do not refrigerate. 3 4 innohep syringes are stored in PVC-free plastic containers. The grey needle cap on the innohep syringe contains no latex. Note: innohep 20,000 IU/ml vial should not be used during pregnancy as it contains the preservative benzyl alcohol, which may cross the placenta. The innohep 20,000 IU/ml syringes do not contain this ingredient. When self-injecting innohep using the 20,000 IU/ml pre-filled variable dose syringes, please follow the instructions (numbered 1-13) correctly and read the more detailed information which can be found in the package leaflet contained in the innohep box. Bend the coloured lid on the plastic container all the way back. Remove the syringe from the container. innohep Before using innohep 1 2 For demonstration purposes only 5 6 Thoroughly wash and dry your hands. 10 Decide where to inject yourself. This is usually on the right or left side of the abdomen; you may also inject into the sides of your thigh. Each time you inject yourself, choose the opposite side from the site of your previous injection. Avoid injecting within 5 cm (2 in) around the belly button and do not inject near to any bruising or scars. Bend the orange safety device down away from the grey cap on the needle. Remove the protective needle cap without bending the needle only when ready to inject. 11
7 How should I use innohep? Disposing of the innohep syringe 7 8 For demonstration purposes only If using the full dose in the syringe, you do not need to remove the air bubble. If you are using only part of the dose, expel the air bubble and the excess liquid, leaving the correct amount of innohep, as shown by your doctor or nurse. Hold the syringe in your writing-hand like you would hold a pen. With your other hand, make a fold of your skin by gently pinching the area where you are going to inject yourself with your thumb and forefinger. Using a hard surface, bend the orange safety device back to its original position so it is now underneath the needle. Place the safety device flat against a hard surface, push downwards until the needle clicks in-to the device. Bend the safety device so that the needle/device is now at a 45 angle to the syringe. Disposal Option 1 Carefully place the syringe, needle first, directly into a sharps container. The empty plastic container can be recycled. If a sharps container is not available please proceed to steps 12 and For demonstration purposes only Gently, but firmly, insert the needle at a 90 angle and continue to hold the skin. Press down on the plunger slowly to inject the innohep over seconds. Remove the needle from your skin, keeping it at 90 and then release the skin fold. Do not rub or massage the area as this can cause bruising. 12 Disposal Option 2 Carefully place the syringe back into the open plastic container (needle first), followed by the grey needle cap. Never put syringes or needles in the household rubbish. 13 Push down the lid, until it clicks. All your used innohep syringes can be stored in the plastic containers and must be disposed of by your GP Practice or local pharmacy. 13
8 What are the possible problems or side effects associated with innohep If you use your medicine as recommended by your Healthcare Professional, you can reduce the chance of experiencing problems. Possible side effects: You may be getting an allergic reaction if: You have difficulty breathing Your face or throat swell Your skin develops a severe rash You experience blistering of the skin, mouth, eyes or genitals or your skin peels Blood spots near the injection site which could develop in to a purple blister surrounded by red inflamed skin You must get urgent medical help if you have any of the following symptoms after having an epidural or spinal anaesthetic. You may be developing paralysis: Tingling, weakness or numbness in your legs or lower body Back pain Problems in going to the toilet You should tell your doctor straight away if you spot any of the following signs which mean you may be starting to bleed severely: Red or brown urine Black tarry stools Unusual bruising Bleeding from your nose, or mouth or any operation wound that will not stop Tell your doctor or nurse if you are pregnant or are planning to become pregnant. You must not have an epidural anaesthetic to help with your labour or surgery within 24 hours of your last injection of innohep. You must wait at least 4 to 6 hours after having a spinal anaesthetic, or after the catheter has been removed, before you start using innohep again. Post-thrombotic syndrome People who have a DVT may develop long-term symptoms in their lower leg. This is called post-thrombotic syndrome. Post-thrombotic syndrome is common in people who have had a DVT, whether they are young or old. Generally, 1 out of 3 people who have had thrombosis in the leg will develop some post-thrombotic symptoms within 5 years. The signs and symptoms can be mild, moderate or severe and may include: Aching Pain Cramps Itchiness Numbness or tingling Swelling Hardened or darkened patches of skin Redness Leg ulcers (severe) It is important to remember that these signs and symptoms may not necessarily be caused by post-thrombotic syndrome, particularly if you have not had a DVT. Other causes could be poor circulation, advanced age, weight gain or leg injury. Your Healthcare Professional may perform similar tests to those carried out for diagnosis of your DVT. These tests will confirm what may be causing these signs and symptoms. If you have been diagnosed with post-thrombotic syndrome, your Healthcare Professional will decide on the best treatment for you; this may include wearing compression stockings. After-care and self-help 14 For a more complete list of side effects see the package leaflet inside your medication pack. 15
9 Important points to remember After-care and self-help To give your treatment the best chance of success please remember to: Use your medication as advised and go for your blood tests regularly. Carry your Medical Alert Card with you in case of an emergency. Tell your Healthcare Professional about all other medicines you may be taking including vitamins and other supplements you can buy from pharmacies or health food shops. Try to have your medicine at the same time every day. Tell your Healthcare Professional if you think you have had too much medication or have missed a dose. Do not use any new medicines that have not been prescribed by your Healthcare Professional, including those you can buy over the counter, without checking with your doctor, pharmacist or nurse first. If you have had a DVT, it is important to look after your legs. There are lots of ways you can help yourself to prevent it happening again. Compression stockings can be worn to relieve pain and swelling. Your Healthcare Professional may advise you to wear them. Put your feet up when sitting or sleeping; your legs should be supported and raised higher than the hips. Place a cushion under your feet. This helps to reduce the pressure in the veins of the calves. Avoid standing for long periods keep moving if you cannot sit. If you injure or cut yourself, see your doctor or nurse immediately to get the injury treated. Take plenty of gentle exercise, for example, walking, swimming or cycling but avoid contact sports that can cause injury or bruising. If you go for any other treatment, for example, to another doctor, dentist or pharmacist, tell them you have been prescribed an anticoagulant or show them your Medical Alert Card or yellow anticoagulation card. Keep all medicines in their original containers safely out of the sight and reach of children
10 How can I prevent a DVT? Avoiding a DVT whilst flying There are many ways you can help prevent another DVT from happening. Avoid sitting or lying for many hours without moving your legs. Exercising regularly by taking a brisk 30 minute walk every day can help stop the blood flow from slowing. Try to maintain a weight that is appropriate for your height. If you are female, over the age of 35 and taking the oral contraceptive pill or HRT, you may wish to reconsider the risks and benefits of these treatments following your experience of a DVT. You should discuss these issues with your Healthcare Professional. DVTs and travelling Long journeys (more than 4 hours) by plane, train etc are thought to slightly increase the risk of DVT. This may be due to sitting immobile and cramped for long periods of time. Other factors that may play a part when flying include reduced cabin pressure and oxygen levels in the plane and slight dehydration. Get up and move around as often as you can. When you are sitting, try moving your ankles around and going up and down on your tiptoes. Drink plenty of water. Drink alcohol, coffee and tea in moderation, as these can dehydrate you. Avoid sitting with your legs crossed and wear loose fitting clothing. Wear your graduated compression stockings, if they have been prescribed, fitted and measured specifically for you by your Healthcare Team. This is particularly important if you have other risk factors for DVT. Talk to your Healthcare Professional if you are more at risk especially when you are unwell or are going into hospital. The increased risk of DVT from travel is small; however, it is wise to try and reduce the risk, particularly if you are in any of the at risk groups. A list of at risk groups can be found in this booklet on page
11 Useful terms Anticoagulant the technical term for a medicine which lengthens the time it takes for the blood to clot. Although commonly known as a blood thinner, an anticoagulant doesn t actually thin the blood. Blood clot the blood clots naturally when you are injured, but sometimes this takes place in the blood vessels of the leg, forming a plug which can interrupt the normal flow of blood in an artery or vein. There are two types of blood clot one that does not move, which is called a thrombus and one that breaks off from the main clot and moves in the bloodstream, called an embolus. Chest X-ray a non-invasive test that creates pictures of the structures inside your chest, such as your heart, lungs and blood vessels. Computerised Tomography Scan (CT Scan) this allows your doctor to see your organs in a 2-dimensional image. D-dimer blood test a test that detects the breakdown products of a clot. If your test is negative, there is no evidence of a thrombus and if your test is positive, more investigations are needed. Deep Vein Thrombosis (DVT) is a blood clot that forms in a vein deep in the body, usually in the legs. The clot can break off and travel to the lungs, causing a pulmonary embolism (PE). Embolus an embolus is a blood clot that breaks away from the main clot. Healthcare Professional the term used for your Doctor, Nurse or Pharmacist. International normalised ratio (INR) a test carried out to see how well warfarin is working for you. It is carried out on a small sample of your blood. A normal INR is 1. Patients who have had a DVT and are being treated with warfarin, ideally have an INR between 2 and 3. This means it is taking the blood two to three times longer to clot. The clinic may ask you to change your dose of warfarin depending on the result. If your INR is too high, you may begin to bleed easily, and if it is too low, you can be at a higher risk of developing another blood clot. Low-molecular-weight heparin (LMWH) an anticoagulant which is available as an injection and which is used to prevent the blood clot from getting larger or travelling to the lungs and causing a pulmonary embolism. Lung scan a test, also called a Ventilation Perfusion Scan (VQ scan), that examines air flow (ventilation) and blood flow (perfusion) in your lungs. 20 Plethysmography a test that can detect if there is a blood clot in your leg. An inflatable cuff is placed around your leg, similar to having your blood pressure taken. Post-thrombotic syndrome a term used to describe the long-term effects that can occur after you have had a DVT. It is caused by damage to the veins resulting in higher than normal blood pressure around the affected vein. This increased pressure on the vein walls can damage the valves which normally work to keep blood flowing properly through your veins. Poor blood flow can lead to pain, swelling and leg ulcers, which are some of the symptoms of post-thrombotic syndrome. Pulmonary angiogram this gives a clear picture of the blood flow of the arteries in your lungs. A flexible tube called a catheter is inserted into a large vein, usually in your groin and threaded through your heart into the pulmonary arteries. Pulmonary embolism (PE) a term for a blood clot which has broken off from one in the legs and has travelled to your lungs. This type of clot can cause chest pain and difficulty in breathing, but is usually treated in the same way as other types of blood clot. If a pulmonary embolism is suspected, more tests will be carried out which could include a lung scan. Spiral CT Scan this differs from a normal CT scan in that the scanner rotates continuously around your body to create a 3-dimensional image. Thrombus a blood clot that does not move. See the definition of blood clot. Ultrasound a simple test carried out to see if a blood clot is present in the veins in your leg. The test is non-invasive and involves moving an instrument up and down your legs. It can find a blood clot by measuring the blood flow in the veins to see if there are any clots blocking this flow. Venogram a test carried out to see if you have a blood clot in your legs. You will have dye injected into a vein on the top of your foot and a blood clot is found using an X-ray. Warfarin an anticoagulant tablet which you take to prevent the development or growth of further blood clots. As each person responds differently to warfarin, regular blood tests are needed to monitor which dose will best suit your needs. 21 Useful terms and links
12 My innohep injection and appointment diary Notes Who will be giving me my injection? What daily dose of innohep will I need? ml My injection diary/next appointment Date Time 22 23
13 Reporting of side effects: If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at By reporting side effects you can help provide more information on the safety of this medicine. LEO Pharma, Horizon, Honey Lane, Hurley, Berkshire SL6 6RJ Registered Trademark Date of preparation: February UK/1030/10872(1) LEO, LEO Pharma, UK, February 2015, ALL LEO TRADEMARKS MENTIONED BELONG TO THE LEO GROUP
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