Methotrexate. Information for patients. Paediatric Rheumatology. Feedback

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1 Feedback We appreciate and encourage feedback. If you need advice or are concerned about any aspect of care or treatment please speak to a member of staff or contact the Patient Advice and Liaison Service (PALS): Freephone: From a mobile or abroad: ext or pals@nuh.nhs.uk Letter: NUH NHS Trust, c/o PALS, Freepost NEA 14614, Nottingham NG7 1BR Methotrexate Information for patients Paediatric Rheumatology This document can be provided in different languages and formats. For more information please contact: If you require a full list of references for this leaflet please patientinformation@nuh.nhs.uk or phone ext The Trust endeavours to ensure that the information given here is accurate and impartial. Paediatric Rheumatology Department Queens Medical Centre Campus Derby Rd, Nottingham, NG7 2UH D Floor, East Block Tel: ext nuhnt.ranch@nhs.net Dr Lampros Fotis, Paediatric Rheumatology Department August All rights reserved. Nottingham University Hospitals NHS Trust. Review August Ref: 0524/ v5/0817/ar. Public information

2 Methotrexate Children and young people are given methotrexate to treat Juvenile Idiopathic Arthritis (JIA) or related inflammatory conditions. Methotrexate has been used to treat patients with other conditions and has been used as a treatment in children s rheumatology for many years with good results. Patients are very closely monitored when taking methotrexate. This leaflet contains information that will help you to understand the reasons for starting to take methotrexate. This leaflet also provides information on the extra precautions that need to be taken while you are taking methotrexate. The information in this leaflet should be read along with any manufacturer s information leaflet issued with your medicine. Do not stop taking the medication unless you have been advised to do so by your nurse or doctor. What is methotrexate? Methotrexate is one of a series of drugs which are immunosuppressants. The aim of methotrexate is to change the way the immune system works. In arthritis the immune system is overactive and this leads to inflammation. This inflammation can cause pain and swelling. Immunosuppressants work by lowering the body s immune response. However, this means that the body does not fight off foreign substances, such as antigens, which cause disease, as well as it should. Before starting methotrexate your doctor will ask for some blood tests to screen for immunity to measles, chickenpox and hepatitis. This is a safety check to make sure that methotrexate is safe for you to have. 2 Notes: 11

3 Who needs to know what medication I am taking? You should make sure that the following health care professionals know what medication you are taking: GP (your GP is normally informed by clinic letter). Health visitor School nurse Dentist Pharmacist or chemist It is important to inform your school nurse/health visitor in writing that you are taking methotrexate and therefore some vaccinations are not safe for you to have. Your rheumatology nurse will inform your school nurse of this. What do I need to know if I am on holiday? Make sure that you have enough medication to take with you. You can speak to your doctor/nurse if you need a prescription earlier than normal. If vaccinations have been recommended you can check with your doctor or nurse if it is safe for you to have these. If your holiday insurers need a letter to confirm your health details or medication you can discuss this with your doctor or nurse. When do I need to take my methotrexate? Methotrexate is usually taken once a week, usually on the same day each week. Your doctor or nurse will tell you how often to take your methotrexate. If you are prescribed methotrexate tablets/liquid you should take your medication one hour after food. How can methotrexate be given? Tablets and liquid. Tablets come in two strengths: 2.5mg and 10mg - care must be taken, as these tablets differ in shape, but are very similar in colour. You must swallow the tablets whole; do not crush or chew them. Please check the label on the bottle carefully to make sure you are taking the correct dose. Try to handle the tablets as little as possible, especially if you are preparing the tablets for your child to take. The medication must be stored at room temperature and safely out of the reach of children. Injection This is a sub-cutaneous injection (an injection just under the skin) using a PEN device. Children and their carers can be taught how to give this injection at home. Your supplier will tell you how to store the syringes. They must be kept safely out of the reach of children. What dose will I be given? Your doctor will prescribe the right dose for you. This is based on your size. 10 You may meet others who have been given methotrexate to treat cancer, however this is in much higher doses. You are being treated for an inflammatory condition not cancer and so the dose you need will be less. 3

4 How long does it take to work? Methotrexate does not work immediately. It may take up to 12 weeks or more before you notice any difference in how you feel. It is important that you carry on taking the methotrexate. In time you will get the full benefit. Routine blood monitoring You will have regular blood tests as part of your treatment. Blood tests are taken for many different reasons: To help make a diagnosis To help rule out other explanations for your illness To assess how active your disease is To monitor drug therapy To ensure that the drug therapy will be safe for you. This will also allow the doctor to decide whether your dosage or medication needs to be changed. When you are taking methotrexate your blood is tested to help to monitor your response to treatment. Methotrexate can affect your blood levels, such as lowering your red cell count (causing anaemia), and can affect your liver function (how the liver works). These are monitored as part of your regular blood checks. Your doctor or nurse will tell you how often your blood needs to be checked. This will vary depending on your test results and response to treatment. Changes in blood results are not usually a long-term side effect; treatment may be adjusted to make sure that the blood results return to normal levels. What do I do if I am in contact with someone who has measles? Measles tends to be a very rare illness. Most rashes are not measles. If you think that you have been in close contact with someone who develops a rash which could be measles, please contact your GP immediately (please also contact the rheumatology team to let us know). Sexual health Safe reliable contraception is very important when taking methotrexate and for six months after finishing treatment. Methotrexate can cause abnormalities to an unborn child during pregnancy. It can affect both the male sperm and the female eggs. Please discuss contraception or planning a pregnancy with your rheumatology doctor or nurse. They can give you information on what risks methotrexate may cause to you and your baby. If you think there is a possibility that you are pregnant or your partner may be pregnant please contact your rheumatology nurse specialist or family doctor immediately. Please ask your doctor or nurse for more information or a leaflet on sexual health and contraception. Your doctor or nurse will also be able to keep you informed of the test results. They will let you know if your treatment needs to be changed. A separate leaflet explaining blood tests is available. Please ask your nurse for a copy. 4 9

5 What to do if you are in contact with chickenpox When taking immunosuppressants or high doses of steroids you need to be aware of the action to be taken if in contact with people having the following: Immunity should be checked in all children aged one year and older who have no clear history of having chickenpox before starting immunosuppressant treatment. If not immune you can be given a vaccine to give immunity to chickenpox before starting immunosuppressive treatment. Your blood will be re-checked for immunity to chickenpox four to six weeks after you have had the vaccination. This then makes it less likely that you will be in contact with the illness. You must inform the paediatric rheumatology team or your GP as soon as possible if you have been in contact with someone who has chickenpox. You will need to be given medication (acyclovir) within seven days of contact with chickenpox. If you develop chickenpox then you may have to attend hospital for a medical review. Some children may need intravenous acyclovir. 8 How might I feel when I am taking methotrexate? As with any medication you may have some side effects when you take methotrexate. Many children and young people have no side effects. If you experience anything that you feel may be a side effect of the methotrexate please let your nurse or doctor know. You should not stop taking methotrexate unless you have been told to do so. A few children feel sick after taking the medicine. This is usually less of a problem if the dose is given at bedtime. There are some medicines such as ondansetron which can help stop the feeling of sickness. You can talk to your doctor or nurse about this. Less common side effects can be: Stomach pains Diarrhoea Mouth ulcers Pain on passing urine Rashes Bone marrow suppression (blood cells are made in the bone marrow; methotrexate can affect how many blood cells are made). Your blood tests help to monitor this. We may prescribe Folic Acid (a vitamin) to help reduce this. Liver inflammation can occur very rarely. However, we look closely for these side effects with regular blood checks. Lung inflammation can occur but is very rare in children. If you develop a dry cough or become breathless contact your doctor or nurse immediately. You may pick up infections more easily. If you have an infection, sore throat, fever, chills or achiness contact your nurse or doctor for advice. If you develop any symptoms such as a skin rash or irritation around the injection site contact your nurse or doctor as soon as possible. Your skin may burn more easily. Use a sunscreen in the summer months. 5

6 You may experience some side effects before you feel any benefits from the methotrexate. Do not stop taking the medicine but please discuss any worries with your nurse or doctor. You must tell your rheumatology team immediately if you have any of the following after taking methotrexate: Infections including fever, chills or sore throats Unexplained skin rash, ulceration or soreness of skin Yellowing of the skin or generalised itching Bleeding gums, black tarry stools (black sticky poos) or unexpected bleeding or bruising Chest pain, difficulty breathing or a dry, persistent cough Sore mouth or mouth ulcers Severe and continuing diarrhoea, vomiting or stomach pains Vaginal inflammation or ulcers If you have any new symptoms after starting to take methotrexate please tell your rheumatology team. Can I take other medicines with methotrexate? Methotrexate is not a painkiller. If you are taking painkillers you must continue to take these as well as methotrexate, unless your doctor tells you otherwise. You must not have the following medicines when you are taking methotrexate (unless specifically agreed by your rheumatology doctor): Trimethoprim (antibiotic) Co-trimoxazole (Septrin)(antibiotic) Phenytoin (epanutin)(anti-convulsant) Anti-malarial drugs Tetracycline (antibiotic) Chloramphenicol (antibiotic) Theophylline (used to treat asthma) Please note; this is not a complete list. 6 If these medications are prescribed by your GP please check with your rheumatology nurse/doctor who can advise you on taking methotrexate at the same time. Before taking any medicines you can buy from the chemist or other shop you should check with your rheumatology nurse specialist, rheumatology doctor or the pharmacist to make sure that they are safe to take with methotrexate. Paracetamol and ibuprofen (Nurofen, Brufen) can be taken with methotrexate if you have been advised to do so by your rheumatology doctor. If you are at all unsure it is best to ask for advice. Please put any unused pre-filled methotrexate syringes, PEN devices, methotrexate syrup in your sharps bin for collection once treatment has been stopped. Unused methotrexate tablets should be returned to your hospital pharmacy for disposal. If you need to go to the A&E department it is important that you tell the staff what medication you are taking. Alcohol It is advisable to avoid taking alcohol as it can increase the risk of liver toxicity and alter blood results, this will be picked up on your routine blood monitoring. If this is relevant, your rheumatology nurse will discuss the use of alcohol with you as part of your teaching plan when you are first prescribed methotrexate. Vaccinations Some vaccinations or immunisations are not safe for you or your family when you are on methotrexate or for six months after finishing treatment. It is safe for other family members to have the MMR vaccination. The virus is not passed on (excreted) following the vaccination. Always check with your rheumatology nurse specialist before you or your family members have any immunisations. 7