Methotrexate Patient Educational Guide RHEUMATOLOGY
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Introduction This educational booklet has been prepared to help you understand more about methotrexate. Decisions about your treatment must be made in partnership with you, the patient, and your healthcare team. The most important goal of treating inflammatory arthritis is to maximise long-term health-related quality of life. The aims of treatment with methotrexate are to improve symptoms of pain, inflammation, stiffness and fatigue, prevent joint damage and restore normal function. It should allow you to participate in daily activities as normal. This booklet will help you better understand how methotrexate works as well as providing helpful information about methotrexate. The healthcare team that you attend will discuss your treatment with you as well as providing additional information about managing inflammatory arthritis. This booklet has been researched and written by Ms. Úna Martin, Clinical Nurse Specialist Rheumatology, RGN,H Dip, MsC, RNP from the Department of Rheumatology, University Hospital Waterford. Úna has over twenty years of experience in rheumatology and appreciates the challenges you may face in coming to terms with your diagnosis of inflammatory arthritis. The content of the booklet has also been reviewed by a pharmacist, psychologist and patient. RHEUMATOLOGY SOUTHEAST MEDICAL NURSING THERAPY Disclaimer: It is expected that the healthcare staff using this document need to use their clinical judgement, in applying the general principles and recommendations contained in this document. Recommendations may not be appropriate in all circumstances and the decision to adopt specific recommendations should be made by the practitioner taking into account the individual circumstances presented by each patient and available resources. Options should be discussed with a rheumatologist on a case by-case basis as necessary. 3
Hospital no: Patient s name: Address: Contact no: Rheumatology contact no: Rheumatology contact name: Consultant name: GP name: GP address: GP contact no: 4
Contents What do you know about inflammatory arthritis? p.6» Let s discuss in more detail p.6» How do we treat inflammatory arthritis? p.6» What you should know about inflammatory arthritis p.7 How does methotrexate work? p.7» How does it help with inflammatory arthritis? p.7» Will methotrexate stop my pain? p.7» What are the potential problems if I don t take medication like methotrexate to treat my inflammatory arthritis? p.8» Some facts about inflammatory arthritis and methotrexate p.9 How do I take methotrexate? p.10» Folic acid p.11 Other important information about methotrexate p.12» Storage p.12» What should I do if I forget to take my methotrexate? p.12» What should I do if I take too much methotrexate? p.12» Taking other medication with methotrexate p.13 What are the potential side-effects of methotrexate? p.14» Tips on managing potential side-effects of methotrexate p.15 Blood monitoring p.16» Why are blood tests required when taking methotrexate? p.16 Other advice p.17» Immunisations p.17» Family planning and pregnancy p.17» Breastfeeding p.18» Surgery and dental work p.18 Smoking and alcohol p.19» What about smoking and methotrexate? p.19» Can I drink when taking methotrexate? p.19» Some facts about alcohol p.19 Where can I get extra support and information? p.20» Support from Arthritis Ireland p.20» Other useful contacts p.20 5
What do you know about inflammatory arthritis? Let s discuss in more detail Causes We don t really know. Triggers may be things like infection, genetic tendency and environmental factors such as smoking. Treatments Medication as well as the support from your multidisciplinary team. They can include the rheumatology nurse specialist, physiotherapist and occcupational t herapist. Prognosis It is different for every person. What you should know about inflammatory arthritis When the inflammation in your joints is triggered the immune system starts to misbehave and instead of recognising that this inflammation is not normal, the immune system will continue to behave in an irregular way and affect the joints. The inflammation affects the lining of the joints and this makes the joints swell, feel sore and painful. Once the immune system starts to behave in this way the inflammation can continue long after the first trigger has gone. Methotrexate is used to treat several different types of inflammatory disease, including rheumatoid arthritis, psoriatic arthritis, seronegative inflammatory arthritis and vasculitis. How do we treat inflammatory arthritis? Medication Occupational therapy Physiotherapy Emotional, physical and social support 6
What you should know about inflammatory arthritis When you get inflammatory arthritis, your immune system can become overactive, methotrexate works by suppressing this excessive activity and so reducing the inflammation. When inflammation is controlled it can alleviate symptoms like pain and stiffness. Methotrexate is not a cure for inflammatory arthritis but it is used to control your condition by regulating your symptoms. In some cases it may reduce the need for other medications. Methotrexate can take up to 12 weeks before you start to notice any benefits. You must continue to take your methotrexate even though you may feel that it is not of any benefit, it is likely that the methotrexate is working. Methotrexate is not given as a short course of treatment and is generally used in the long-term treatment of inflammatory arthritis. Methotrexate is often described as an anchor drug. It may need to be taken alongside other prescribed medications for inflammatory arthritis. Research has shown that combining medications like this can have a greater effect on symptoms. Will methotrexate help stop my pain? You may find you need to continue taking anti-inflammatory drugs or painkillers. Once the methotrexate has started to work you may find that you can reduce the dose of these medications or stop them. Discuss this with your nurse or doctor about changes that can be made in your medication. 7
What are the potential problems if I don t take medication like methotrexate to treat my arthritis? 1. Joint destruction and deformity If the arthritis is left untreated this can lead to joint damage and deformity. 2. Loss of function and disability Inflammatory arthritis affects tissues surrounding the joints, including tendons, ligaments and muscles that stabilise the joints. This can weaken the joint and lead to a loss of function and disability. 3. Osteoporosis People with inflammatory arthritis are at risk of the bone thinning condition called osteoporosis. 4. Coronary artery disease Research suggests that the inflammation related to inflammatory arthritis triggers the build-up of plaque in the arteries. 5. Anaemia The inflammation of chronic inflammatory arthritis decreases the formation of red blood cells in the bone marrow leading to anaemia. 8
Some important facts about inflammatory arthritis and methotrexate About 40,000 people have inflammatory arthritis in Ireland. On average, 3 to 5 patients per week start methotrexate for inflammatory arthritis in rheumatology centres in Ireland. Methotrexate is a very important drug that has helped millions of people living with inflammatory arthritis. It has been used to treat people with inflammatory arthritis since 1959. It is true that methotrexate is a chemotherapy drug only small doses in tablet form are used to treat inflammatory arthritis in comparison to how it is used in cancer. It has the potential to reduce the activity of the immune system so it is used with careful consideration and is prescribed by your rheumatology consultant. 9
How do I take methotrexate? METHOTREXATE IS ONLY TAKEN ONE DAY A WEEK Pick a day of the week to take your methotrexate and mark it on your calendar and stick to that day. We often recommend a Monday ( M for Monday M for methotrexate) The starting dose may vary from 10mgs weekly to 15mgs weekly. The dose is increased by 2.5mgs to 5mgs weekly at intervals over a period of months. This will be reviewed when you are seen by the rheumatology consultant or rheumatology nurse. Each individual s response to inflammatory arthritis is different; the dose will be carefully worked out to suit your needs. Methotrexate is available in two strengths, 2.5mgs tablets and 10mg tablets. It is important that you know your dose of methotrexate and folic acid. If you are unsure about what dose you should be taking or any changes that have been made to your dose make sure to check this with your doctor, nurse or pharmacist. Take your tablets by mouth, after food. Swallow your tablets with a glass of water and do not crush or chew them. Occasionally the doctor may prescribe your methotrexate by injection once weekly when people experience side-effects or when the tablet form is not managing the symptoms of your inflammatory arthritis adequately. METHOTREXATE IS ONLY TAKEN ONE DAY A WEEK 10
Folic acid Folic acid is a B vitamin that has been shown to help your body cope with methotrexate. It can also help prevent some of the side-effects that you can get with methotrexate. Instructions will given to you by your nurse / doctor on how much folic acid to take and when to take. Sometimes the dose of folic acid can be increased by the doctor if required. It is important NOT to take your folic acid on the same day as your methotrexate. CHECK YOUR PRESCRIPTION AND TABLETS VERY CAREFULLY EVERY TIME YOU COLLECT YOUR MEDICINES FROM THE PHARMACY. 11
Other important information about methotrexate Storage of methotrexate Store in a cool dark cupboard. Out of reach of children and pets. If you are taking methotrexate by injection your nurse will advise you on storage. What should I do if I forget to take my methotrexate? If you forget to take your methotrexate on your normal day don t worry. You can take your methotrexate the following day. If it is more than three days late wait until the following week to take it. Write down on your calendar what day you are taking your methotrexate and what day you are taking your folic acid. Stick to those same two days every week. What should I do if I take too much methotrexate? If it is between Monday to Friday (09.00 to 17.00) contact your rheumatology department and ask to speak to a member of the rheumatology team. If it is outside these hours or at the weekend contact your GP/ Caredoc services or your local emergency department. Keep a note of all your bottles / cartons that your tablets were in and a note of how many tablets you think you may have taken. If the error is not considered to be serious, you may be advised to have a blood test first and miss your next dose of methotrexate. 12
If required you may be advised to take a course of tablets that help reduce the effects of methotrexate. Taking other medication with methotrexate Always tell your doctor and pharmacist that you are taking methotrexate. It is very important that you tell your doctor or nurse about all the medications that you are taking; this includes herbal and alternative remedies. This also includes any medicines that you buy over the counter for coughs and colds. You must not take a drug called co-trimoxazole (septrin) or rimethoprim with methotrexate as it can interact with methotrexate and can be dangerous. It is very important that YOU bring a list of all your medications with you to every clinic or hospital appointment. If you are taking any medications for epilepsy (phenytoin) and anti-asthma medication (theophylline), these should be avoided as they can increase the level of methotrexate in your blood. This should be discussed with your doctor or nurse. Keep a personal record of all your medication that you are taking, this includes any supplements, vitamins, over the counter medication and herbal medications. Bring this to ALL your clinic / hospital appointments. Handling of methotrexate Keep the handling of your methotrexate to a minimum. 13
What are the potential side-effects of methotrexate? Most patients that take methotrexate for inflammatory arthritis cope well with taking their methotrexate. However it is important that YOU the patient are aware of some of the potential problems that can occur with methotrexate and how to manage them. About 3 in 10 patients experience side-effects with methotrexate, however they are generally mild. About 10% of patents experience a loss of appetite, nausea, vomiting, sore mouth, rash, headaches and diarrhoea with methotrexate. About 10% of patients report thinning of the hair. Changes in your blood tests that includes your bone marrow and liver tests. It is very important to have your bloods done regularly so that any changes in these can be dealt with and occasionally you may have to reduce the dose or stop your methotrexate. Very rarely methotrexate can cause inflammation of the lung. If you notice a dry cough, feel breathless when resting but don t have any other signs of a cold, stop your methotrexate and contact your doctor or nurse. 14
Tips on managing potential side-effects Feeling sick, upset stomach or diarrhoea: This may be something that settles but if these symptoms persist discuss this with the nurse or doctor. Eat little and often. Take plenty of fluids on a regular basis and stick to simple foods. You may be advised to take folic acid more than once a week You may have your methotrexate changed to an injection once a week. Sore mouth, mouth ulcers, sore throat Brush your teeth with a soft toothbrush 2 to 3 times per day. Use a mild mouthwash (1 teaspoon of salt in water) on a regular basis. You may be advised to take folic acid more than once a week Rashes If you get a new rash or severe itching, discuss with your nurse or doctor. If you notice any unusual bruising, sore throat bleeding (gums, nose bleeds), catching infections easily, it is important to report these to your doctor or nurse. This could be a sign that your methotrexate is affecting your bone marrow. Methotrexate also increases the skin s sensitivity to sunlight so it is important to use high factor sun cream if you are out in the sun. Thinning of the hair This is an uncommon problem. Monitor the hair loss and if you feel it is more than normal discuss this with your nurse or doctor. Headache Try a simple painkiller (paracetamol) to begin with and if it persists discuss with your nurse or doctor. 15
Blood monitoring Why are blood tests required when taking methotrexate? It is important that you have your blood tests done regularly, in particular in the first few weeks of starting treatment and continue to do so as instructed by your nurse or doctor. Having regular blood tests is extremely important in order to track any changes in blood count and liver function.you will be provided with a record monitoring booklet for recording all blood tests carried out. This booklet is very important as it allows the sharing of your blood results with your GP and the hospital. Bring your booklet to all your appointments so that the blood tests can be recorded and updated. It is your responsibility to have your blood tests done as recommended. You must not take your methotrexate unless you are having regular blood tests. If you are not having your blood tests done as instructed you should not be taking your methotrexate. IT IS VERY IMPORTANT THAT YOU ATTEND ALL OF YOUR BLOOD TEST APPOINTMENTS. 16
Other advice Immunisations Is it safe to have the following vaccinations when taking methotrexate? It is generally recommended that if you are taking methotrexate that you should have the FLU VACCINE and the PNEUMOCOCCAL VACCINE. You should discuss this with your GP. If you are taking methotrexate and have never had chickenpox you may be at risk of infection from the virus which causes chickenpox and shingles. If you come into close contact with someone who has either of these conditions, you need to contact your doctor or nurse immediately as you may require treatment. Live vaccinations should be avoided and discussed with your doctor or nurse. If you are travelling overseas you should discuss your individual requirements with your doctor or practice nurse. Family planning and pregnancy You should talk to your doctor as soon as possible if you are planning a family or if you become pregnant while taking methotrexate. Methotrexate may harm your unborn child and increase your risk of miscarriage. It is recommended that you should stop taking this drug METHOTREXATE for 3 months and continue with contraception for that period before planning your pregnancy. It is the same recommendations for men. It is vital that YOU take responsibility and use effective contraception when you are taking METHOTREXATE. This is a matter that you may want to discuss in more detail with your GP or practice nurse. 17
Breastfeeding Depending on the severity of your arthritis after giving birth, you should consider whether or not to resume methotrexate before breastfeeding. If you choose to breastfeed your baby you should not be taking methotrexate. Discuss this with your doctor or nurse when making important decisions about managing your medication and breastfeeding. Surgery Make sure to tell the doctor or nurse that you are taking methotexate prior to any surgery. Bring a list of all the medications that you are taking to the pre-assessment clinic. It is not necessary to stop methotrexate prior to surgery but there may be other drugs that you are taking for your inflammatory arthritis that may have to be stopped prior to surgery or discussed with your rheumatology team. Dental work When you visit the dentist bring a list of all your medication that you are taking for your inflammatory arthritis. The dentist will take this into consideration when performing any dental work that you require and if necessary he can contact the rheumatology team. 18
Smoking and alcohol What about smoking and methotrexate? In today s society we are all aware that smoking can impact both our health and finances. There are numerous reasons to stop smoking but when it comes to inflammatory arthritis there are very good reasons. There are a number of studies that suggest that if you continue to smoke after developing inflammatory arthritis you may develop more severe joint disease. It has been found that smoking may reduce the effect of treatments for inflammatory arthritis. Quitting smoking is one of the best things you can do for your inflammatory arthritis. It will bring numerous benefits to you in the long-term as it can reduce the severity of your inflammatory arthritis and ensure your treatments work as effectively as possible. For further advice and support contact www.quit.ie Can I drink when taking methotrexate? Drinking alcohol and taking methotrexate should be avoided as it has the potential to cause liver damage. Some facts about alcohol For low risk drinking the weekly limits are as follows Up to 11 standard drinks a week for women Up to 17 standard drinks a week for men. Drinking more than your weekly limit can also increase your weight and blood pressure, putting you at increased risk of heart disease and stroke. 19
Where can I get extra support and information? SUPPORT FROM ARTHRITIS IRELAND At Arthritis Ireland, you can learn more of the skills that will help you deal with your inflammatory arthritis on one of Arthritis Ireland s self-management courses. Living Well with Arthritis, our most popular course, focuses on what you can do for yourself, how to get the most from health professionals, handling pain, fatigue and depression, relaxing and keeping active. It is a great chance to meet and share tips with other people who are living with similar conditions. Are you looking for somebody to speak to about living with inflammatory arthritis? Why not give the Arthritis Ireland Helpline a call. All our volunteers are living with arthritis and, as such, have a strong understanding of what it is like to live with a lifelong condition like inflammatory arthritis. Call 1890 252 846. For more information on how Arthritis Ireland can help, contact us on LoCall 1890 252 846 or visit our website at www.arthritisireland.ie. Other useful contacts National Rheumatoid Arthritis Society www.nras.org.uk Arthritis Care www.arthritiscare.org.uk Arthritis Research UK www.arthritisresearchuk.org 20
Notes Make a note of any concerns you would like to raise at your next appointment as they occur to you. 21
Blood test monitoring 22
Blood test monitoring 23
Treatment tracking 24
Treatment tracking 25
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Blood test record 28
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Blood test record 30
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Blood test record 32
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Progress log Date Chart your progress every week from when you start your methotrexate. Pain YES / NO: If YES, then rate the severity of pain where 0 is no pain and 10 is the worst pain you can imagine. Early Morning Stiffness YES / NO: If YES, how long for? ----Mins----HRS Fatigue YES / NO: If YES, then rate the severity of fatigue where 0 is no fatigue and 10 is the worst you can imagine. General health Considering all the ways in which illness and health conditions may affect you at this time, please rate your general health where 0 is very good health and 10 is very poor health. Have you had a flare recently? YES / NO: If YES, then rate the severity where 0 is no symptoms an 10 is the worst you can imagine. Date Chart your progress every week from when you start your methotrexate. Pain YES / NO: If YES, then rate the severity of pain where 0 is no pain and 10 is the worst pain you can imagine. Early Morning Stiffness YES / NO: If YES, how long for? ----Mins----HRS Fatigue YES / NO: If YES, then rate the severity of fatigue where 0 is no fatigue and 10 is the worst you can imagine. General health Considering all the ways in which illness and health conditions may affect you at this time, please rate your general health where 0 is very good health and 10 is very poor health. Have you had a flare recently? YES / NO: If YES, then rate the severity where 0 is no symptoms an 10 is the worst you can imagine. 34
Progress log Date Chart your progress every week from when you start your methotrexate. Pain YES / NO: If YES, then rate the severity of pain where 0 is no pain and 10 is the worst pain you can imagine. Early Morning Stiffness YES / NO: If YES, how long for? ----Mins----HRS Fatigue YES / NO: If YES, then rate the severity of fatigue where 0 is no fatigue and 10 is the worst you can imagine. General health Considering all the ways in which illness and health conditions may affect you at this time, please rate your general health where 0 is very good health and 10 is very poor health. Have you had a flare recently? YES / NO: If YES, then rate the severity where 0 is no symptoms an 10 is the worst you can imagine. Date Chart your progress every week from when you start your methotrexate. Pain YES / NO: If YES, then rate the severity of pain where 0 is no pain and 10 is the worst pain you can imagine. Early Morning Stiffness YES / NO: If YES, how long for? ----Mins----HRS Fatigue YES / NO: If YES, then rate the severity of fatigue where 0 is no fatigue and 10 is the worst you can imagine. General health Considering all the ways in which illness and health conditions may affect you at this time, please rate your general health where 0 is very good health and 10 is very poor health. Have you had a flare recently? YES / NO: If YES, then rate the severity where 0 is no symptoms an 10 is the worst you can imagine. 35
Other investigations Investigation Date Result Chest x-ray Hep Screening Quantiferon Test Mantou Test Varicella HIV Status RH Factor Anti-CCP B12 Folate TSH Ferrtin 36
Other investigations Investigation Date Result Chest x-ray Hep Screening Quantiferon Test Mantou Test Varicella HIV Status RH Factor Anti-CCP B12 Folate TSH Ferrtin 37
Other investigations Investigation Date Result Chest x-ray Hep Screening Quantiferon Test Mantou Test Varicella HIV Status RH Factor Anti-CCP B12 Folate TSH Ferrtin 38
Other investigations Investigation Date Result Chest x-ray Hep Screening Quantiferon Test Mantou Test Varicella HIV Status RH Factor Anti-CCP B12 Folate TSH Ferrtin 39
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