Clozapine an introduction to treatment Pharmacy Department If at any time you have run out of tablets, or are concerned that you may run out, please contact the number below as soon as possible: A member of Cambridge University Health Partners
Contents Subject Page Contents 2 Schizophrenia treatment with clozapine 3 How to take clozapine 4 What happens when a dose is missed 5 Duration of treatment 6 Telling others that you take clozapine 7 Smoking and clozapine 7 Taking other medicines with clozapine 8 Finding out more about clozapine 9 Side-effects from treatment with clozapine 10-11 Monitoring pages for test results 12-13 Side-effects from treatment with clozapine (cont) 14-15 Side-effects related to your blood 16 Blood testing information 17-18 Local clozapine clinics 19-20 What happens at the clozapine clinic 21-22 What to do if you can t attend clinic 22 Alternatives to attending a local clinic 23 Alternative information sources 23 Appointments page 24 2
Schizophrenia treatment with clozapine Clozapine is a medicine used in the treatment of schizophrenia and in the treatment of psychosis in people that have Parkinson s disease. It is particularly useful for people for whom other treatments have not been successful. It has been used for successfully treating other related conditions as well. In schizophrenia a naturally occurring chemical called dopamine is overactive. Clozapine mainly works by blocking the way in which dopamine works in certain parts of the brain. Dopamine is important in thinking, emotions, behaviour and perception. When too much dopamine is present in the brain it can cause symptoms like hearing voices (hallucinations), or having ideas that people may be against you (paranoid delusions). It can make it difficult for people to tell between what is real and what is imagined, and can make it difficult to think straight, express feelings, or behave appropriately. It is important to be aware that clozapine is reserved only for people that have not done well with other medicines either because they were not effective, or they caused excessive side-effects. Clozapine is only prescribed by experts in the treatment of mental health conditions, and is not available through your GP. For more information about schizophrenia, you can get a copy of the Insight in Schizophrenia leaflet from the Trust s public website (see link later in this booklet). If you are unable to get a copy of the leaflet from a computer, speak to your nurse about getting hold of a copy. 3
How to take clozapine Always follow the instructions on the label. Clozapine may be given at night or twice day. Some people might find it better to have their dose split into smaller amounts through the day. When you start taking clozapine, the amount you take will be increased slowly over time and may be split into a morning and evening dose. This is done to try to prevent you from having side-effects and to find the dose that suits you best. Always be consistent with taking your tablets. Do not miss out doses, or change the amount you take without checking that it is safe to do so with your psychiatry doctor or care coordinator. If you stop using clozapine suddenly, then you can become unwell again quickly. Your care co-ordinator or psychiatry doctor can discuss with you about a gradual reduction in dose before stopping, or changing over to another medicine. People that take clozapine are looked after carefully so that they get the most benefit from the treatment, and to check that any side effects are dealt with. For this reason you will need to have regular blood tests (see page 16-18 of this booklet). 4
What happens if I do miss some doses? If you miss a dose start again as soon as you remember unless it is almost time for your next dose, then go on as before. Do not try to catch up by taking two or more doses at once as you may get more side-effects. It is really important that you continue to take clozapine regularly once you start treatment. If you are concerned that you may run out of tablets before you are next due to get a supply, please contact your care co-ordinator or the pharmacy department that normally supplies you with clozapine. They can make arrangements with you to provide a supply to prevent you from missing any doses. If you are thinking of not taking clozapine any more contact your psychiatry doctor or care co-ordinator first. If you miss doses for more than 2 days (48 hours) in a row, you will need to restart your clozapine slowly (a bit like when you first went onto it). This re-start of treatment needs to be under the direction of your psychiatry doctor (although it is possible that you may not need to come into hospital to do this). This is because when you start clozapine after a gap of more than 48 hours, it can make the side effects worse, such as blood pressure changes, drowsiness and dizziness. If you have a gap in treatment of 3 days (72 hours) you may also need to have more frequent blood testing for a short period. 5
Treatment duration Clozapine is used in cases of schizophrenia when other types of treatment have not worked as well as hoped. The duration that you remain on clozapine should be discussed with your doctor as people respond differently. You will probably, however, need to continue your treatment for several years. People that take clozapine for their schizophrenia have been found to have less frequent admissions to hospital. You will regularly be re-assessed and asked about how you are getting on with treatment. This will give you the chance to talk about any side-effects you are getting. Even though you may feel well, you should not stop taking your clozapine without discussing it with your psychiatrist first. 6
Informing others of being on clozapine Other medicines can interfere with how well clozapine works and so it is important that any changes in treatment are checked through before using them. Remember to inform people like doctors, nurses, dentists and pharmacists if a change to your tablets is being considered. It is particularly important that you remind your GP that you are taking clozapine. This will allow your GP to make appropriate checks of your health, to look out for any signs of infections that may be a result of clozapine affecting your blood, and to check that any new medicines you might be given are safe in combination with clozapine. Smoking and clozapine Tobacco smoke affects the way your body deals with clozapine. You should tell your psychiatry doctor or care coordinator if you are planning to stop smoking, or have taken up smoking, as this may mean your dose of clozapine needs to be adjusted. 7
Taking other medicines with clozapine The action of clozapine can be affected by taking certain medications. It is very important that when someone prescribes you a new tablet, or alters your current tablets, that you let them know that you take clozapine. This could include any medicines given to you by a doctor, dentist, or nurse, or any medicines you may buy from a pharmacy/chemist shop. In general, the action of other tablets may: 1) Reduce the effectiveness of clozapine, 2) Increase the risk of you developing a problem with your immune system and your ability to fight infections, 3) Increase the risk of developing side effects that clozapine can cause. Always check with the person giving you medicines that it is safe to take with your clozapine tablets, or contact you local pharmacy department for advice. 8
Finding out more about clozapine One good source of information about clozapine is the manufacturer s leaflet that is supplied with the tablets. The leaflet has more detail about aspects of treatment with clozapine than is covered in this book. Another way of getting more information is to ask your doctor or nurse that supports you, or to ask the staff responsible for your local clozapine clinic. There is a lot of independent information on clozapine available from charity organisations and from the NHS. Contact information for some organisations that have produced information about clozapine is on the back cover of this book. If you don t have access to a computer, speak to your psychiatry doctor, care co-ordinator or pharmacy department about getting access to this information. 9
Side-effects of clozapine treatment Clozapine is a very effective treatment, but, like any medicine, it can cause people unwanted side effects. The type of effect that can occur, and how bad that effect is varies from person to person, and it not easy to tell who will be most affected. Most common side-effects are talked about below. Even though these side-effects are described as common, they are not experienced by everyone, so don t assume you will definitely get them. It is important to remember not to stop taking your clozapine if any of these side-effects apply to you, but to inform your psychiatry doctor, care coordinator, GP, or pharmacist. They may be able to suggest strategies for overcoming the side-effect without the risk of becoming unwell from not taking the medication. All people taking clozapine should be offered a health and wellbeing check every 3 months. This is often done as part of a routine visit to the clozapine clinic, or may be done at your GP surgery. This is an ideal time to raise any issues you have with side-effects. Tiredness: People often find that after taking their clozapine they feel more tired than normal. This effect often reduces after you have taken clozapine for a few weeks. If it doesn t improve your doctor may adjust the time that you take your dose. If you feel tired you should not drive or operate machinery. 10
Constipation: Some people find that clozapine can cause them to fell bunged up inside and may pass solids less often than normal. Before using other treatments, try to ensure that you eat a good diet with plenty of fruit and vegetables, drink plenty of fluids and increase the amount of fibre in the diet. Gentle exercise may also help. Otherwise you may need to speak to your psychiatry doctor about a mild laxative. Excess saliva production: Complaints about drooling and excess spit/saliva have been reported by people who take clozapine. This is not in any way dangerous, but can be distressing. There are several medicines that are used to good effect to help with this your psychiatry doctor can talk to you about this. Low blood pressure: At the start of treatment some people may find that they feel dizzy or spaced out, particularly when moving from sitting down to standing up. This often goes within 2-4 weeks. When you first start treatment your blood pressure will be checked frequently. Take your time when standing up to minimise the effect it has on you. At your health and wellbeing check your blood pressure will be recorded to check that there are no problems. (Continues after centre pages) 11
Write in the result of your tests, or just tick to say that you had your check done. Every 3 months Date Weight, waist and BMI Blood Pressure Pulse ECG carried out before treatment started: You or your doctor can write the results of 'clozapine levels' in the area below: Date Clozapine Level 12
After 3 months, 6 months, 12 months and yearly thereafter After 3 months, 12 months and yearly thereafter Blood Glucose Cholesterol Liver Function Urea and Electrolytes Norclozapine level Dose at time of test 13
Weight gain and body shape changes: Some people may find that they put on weight more easily or find that their appetite increases when they start treatment. Try to ensure that you take regular exercise and ensure that you are eating fruit, vegetables and fibre if you are hungry. At your health and wellbeing checks your weight and waist measurement will be recorded to spot any trends. The staff will be able to advise you about things you can do to prevent weight gain. Fast heart beat/palpitations: Although rare, and not usually dangerous, always tell your doctor if you feel that your heart is beating faster or irregularly. Your doctor will be able to check if it is something that is a mild issue or something that needs closer attention. During health and wellbeing checks your pulse should be checked. Raised blood sugar levels: It is thought that clozapine can cause some people to develop higher than normal levels of sugar in the blood stream. It is not clear if this is this is a directly related to an increase in appetite that some people find when taking clozapine. When you first start treatment the sugar levels in your blood will be tested, this will be repeated during visits to the clinic or GP that you attend. If you find that your appetite is increased, then make sure that you are not consuming high sugar or high fat products to combat hunger. Generally it is a good idea to eat a well balanced diet, and reducing excessive sugars in the diet is beneficial to health overall. 14
Shaking, jerking, stiffness and other movement problems: There are different kinds of movement issues that a minority of people have reported with clozapine treatment. These can be distressing though not normally dangerous. There are treatments to counter these effects that your doctor can talk through with you. Always let your doctor know if you find that you have developed a movement problem. Fever and flu type symptoms (e.g. sore throat, aches and pains): As clozapine can affect your body s blood system that deals with infections it is very important that you tell your GP if you find yourself coming down with the first signs of a flulike illness. You may need an extra blood test to ensure that your immune system is not affected by your clozapine treatment. If you are buying cough/cold remedies that you let your pharmacist know that you take clozapine as it can affect which remedy will suit you. 15
Clozapine and its effect on the blood Perhaps the side-effect that has the most impact on those that take clozapine is the effect it can have on the parts of the blood system that help fight infections. Although this side-effect is very rare, it is important that people using clozapine have regular blood tests to ensure that it is not having this effect. The components of the blood that can be affected are the different types of white blood cells. White blood cells have an important role in fighting infections. Clozapine can reduce the number of white blood cells, leaving you at risk of developing serious illness from small infections. To check that this is not happening to you, regular blood tests throughout treatment with clozapine are carried out. The risk of developing this side-effect is low, and is most likely to occur at the beginning of treatment. For this reason the tests are more frequent in the early stages. Remember that if you have any symptoms such as aches and pains, sore throat, raised temperature that may be a first sign of an infection see your GP and inform them that you are taking clozapine. 16
Blood tests The reason for having blood tests: Clozapine is very good for helping people to stay well. Unfortunately a very small number of people find that clozapine can have an unwanted effect on certain blood cells. This causes the body s ability to fight infection to not be as good as normal, and can leave you at risk of complications from any infection. This needs to be prevented, and the best way to do this is to take blood samples, and check that the blood cells are at a good level. Where the blood testing done: The choice of place for your testing depends on a number of factors, and will be discussed with you when you start on treatment. Some people will be invited to go to their local GP so that the practice nurse can take a blood sample. This sample is then posted to a local testing centre. The pharmacy department will then check the result and issue your tablets to you. Some people may wish to attend a local clozapine clinic (more information about the clozapine clinics can be found later in this booklet). Here the blood sample is taken by a trained professional and tested all in one go, and then tablets are issued to you there and then. 17
How the blood is tested: The blood test is no different to the blood testing done for anyone that is having their health checked by a doctor. A small sample of blood is taken from the arm by a specially trained person using a needle. The blood is then tested in a machine to check the amount of the different components in the blood. The machine will detect if there are healthy amounts of white blood cells present. The frequency of the blood tests: The time that you are most at risk of this unwanted effect on the blood is early in treatment, although it can happen at any time. For this reason testing is most frequent at the beginning of treatment. For the first 18 weeks the test is done every week, for the next 34 weeks the tests are every two weeks. After this time, the test is done once every month. If there is any problem with a blood test you may be asked for another sample to be taken. This rarely occurs. What does the result mean for me? If a healthy amount of white blood cells are found in the blood after testing, you will be given your next supply of clozapine. If the result shows that your blood is being affected by taking clozapine, then it may mean you need to have a short period of more regular testing, or you may need to be seen by a doctor to check the best course of action for you. 18
Cambridge clozapine clinic Pathways 126-130 Tenison Road Cambridge Cambridgeshire CB1 2DP T 01223 516911 Tuesdays 9:30am - 2:30pm Pharmacy department at Fulbourn Hospital T 01223 218518 Peterborough clozapine clinic Lucille Van Geest Centre Thorpe Road Peterborough PE3 6DA T 01733 318155 Wednesdays 10:00am 12.30pm Pharmacy department at Peterborough Hospital T 01733 776006 Huntingdon clozapine clinic Newtown Centre Nursery Road Huntingdon PE29 3RJ T 01480 415340 Tuesdays 1:00pm 3:00pm Pharmacy service provided by Fulbourn Hospital T 01223 218518 19
Local clozapine clinics provides a convenient and easily accessible location for people that take clozapine to have their treatment monitored and their on-going health checked. The service allows for blood taking and testing on site and for tablets to be issued, with trained staff present to make the process as safe and speedy as possible. The clinic team consists of a nurse to check how well you are getting on, a person trained to take the blood sample and one person trained to test the blood samples and interpret the test result. The team are able to provide advice to you about your medication, and will try to help ensure that you stay well and will offer you the chance to go through any health concerns that you may have with routine health and wellbeing checks. Clozapine clinics are held weekly at the times shown here. There are no appointments, so you can drop in at any point between these times. If there is any reason why you are not able to attend clinic on the scheduled day, please inform the clinic so that they can arrange with you an alternative. If you have a question at any other time about your medication or about the blood tests you can contact the appropriate local pharmacy department who are responsible for managing the tablet supplies and checking the blood test results. You can contact the pharmacy departments on the number shown. 20
What does my visit to a clozapine clinic involve? 1) Placing your name on a list so that everyone gets seen in the order they arrived. 2) Taking your blood sample a small sample of your blood is taken from your arm using a small needle. The phlebotomist will do their best to minimise discomfort and will take the sample as quickly and efficiently as possible. 3) Testing the sample Your blood sample will be mixed for 15 minutes to allow the test to be done properly. Once mixed, the sample is placed in a machine. The machine gives a result within a few minutes that shows if clozapine is having any affect on your ability to fight infections. 4) Checking the result and issuing your tablets The pharmacy technician will check the result, and decide if it is safe for you to continue with your treatment. If the result is good, then you will be issued enough tablets until your next test. If the result is not as good as wished for, then you will be given advice about what happens next. This typically involves sending the blood sample to another testing machine (to ensure the result is correct), or getting another blood test done in a few days time. If the test result shows that the white cells are very low you may have to stop taking clozapine and be seen as a priority by a doctor. It is very rare for this to happen but it is important that it is checked out. (Continued overleaf) 21
5) Health and wellbeing check You will be offered an opportunity to have a health check with one of the nursing staff. This check gives you time to discuss any issues you may be having, and for us to ensure that the treatment is providing you the maximum benefit and not causing any ill effects. As part of the health check you can be weighed, have your waist measured, have your blood pressure checked and get advice and support for healthier living, such as smoking cessation advice, dietary modification and more. What to do if you are planning a holiday or are unable to attend clinic on the normal day If you are planning a holiday, or are unable to attend for your normal blood test let pharmacy staff or your care co-ordinator know as soon as possible so that the blood tests can be rearranged at an appropriate time and your supply of tablets can be adjusted to match your needs while on holiday. 22
Alternatives to attendance at a local clozapine clinic As clozapine cannot be prescribed by your GP, supplies will be co-ordinated through your local mental health hospital pharmacy department. The clozapine clinics mentioned here are run by people from mental health services and provide the best expertise to patients that take clozapine. Obviously the frequency of blood testing means that it can be inconvenient to travel to a local clozapine clinic in order to have blood samples taken. As an alternative, the process can be managed by your local GP practice. In this situation you would be responsible for organising blood tests at appropriate intervals with the practice nurse or GP. Clozapine would be available for collection from the local hospital pharmacy department as soon as a blood test result has been obtained. GPs cannot prescribe clozapine tablets; it has to be done through the hospital. For more information about clozapine and Schizophrenia 1) NHS Choices & NHS direct www.nhs.uk 2) Choice and Medication www.choiceandmedication.org.uk 3) Royal College of Psychiatrists www.rcpsych.ac.uk 4) MIND www.mind.org.uk 0845 7660163 5) Cambridge and Peterborough Foundation NHS Trust public website www.cpft.nhs.uk Cambridgeshire and Peterborough Foundation NHS Trust, Elizabeth House, Fulbourn Hospital, Fulbourn, Cambridge, CB21 5EF 23
My appointments and contacts Use this page to record how often you have blood tests, and when your next blood test appointment is. Clinic information and testing frequency Clozapine clinics run once a week on Tuesdays (see page 19 for times and venues). Every week Every 2 weeks Every 4 weeks My appointments for blood test _/_/_ _/_/_ _/_/_ Contacts My consultant is: My care co-ordinator is: Cambridge clinic: T 01223 516911 Huntingdon clinic: T 01480 415340 Peterborough clinic: T 01733 318155 If you have any concerns about any of the Trust s services, or would like more information please contact: Patient Advice and Liaison Service (PALS) on freephone 0800 376 0775 or e-mail pals@cpft.nhs.uk Out-of-hours service: 0808 808 2121 7pm-11pm 365 days a year. 24