Mycophenolate Mofetil. Monitoring and Dosage Record For patients with neuromuscular disease

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1 This booklet has been written and developed by the Neuromuscular Clinical Nurse Specialists at The National Hospital for Neurology and Neurosurgery. For further information please contact the relevant specialist nurse on the following numbers: Mycophenolate Mofetil. Monitoring and Dosage Record For patients with neuromuscular disease Peripheral Nerve Nurse: Muscle Nurses: or Myasthenia Nurse: The National Hospital for Neurology and Neurosurgery August For Review August

2 Patient s name: Space for notes and questions Address: Date of birth: Contact telephone No: This booklet holds information about your immunosuppression therapy. Please keep this booklet with you all the time and show it to any person treating you including your doctor, pharmacist and nurse. Important Information This booklet provides some information about your medication, it is important that you read the manufacturer s information leaflet inside the medication package. The information in this booklet is in no way exhaustive and is not a substitute for the manufacturer s information, only an adjunct. If you have any further questions, please ask your doctor, pharmacist or specialist nurse. Take this medication only as directed. Do not change anything without checking with your doctor or specialist nurse first. This medicine has been prescribed for you only. Do not give it to anyone, even if their symptoms are the same as yours. 2 15

3 : A component of blood that rises in response to inflammation in the body. This rate increases with more inflammation. : A variable and general indicator of acute inflammation (this may remain elevated during treatment). Urea and Creatinine: Substances normally cleared from the blood by the kidneys. Increased blood levels of urea and creatinine indicate that the kidneys may not be functioning normally. Contact details for the healthcare team looking after you: Diagnosis: Consultant name: GP surgery address & telephone: Potassium and Sodium: Electrolytes (salt levels) maintain natural body balance. Bilirubin: Interpreted with other liver function tests Specialist nurse contact details: CK: Muscle enzyme that circulates in the blood (this is variable The interpretation of these results will be given to you by your specialist nurse. For further information on medicines Contact the UCLH Pharmacy Helpline: on Monday - Friday 10am - 4pm For advice outside working hours Contact your local out of hours GP service 14 3

4 Mycophenolate Mofetil - (mye koe fen oh late) Mycophenolate mofetil is used as an immunosuppressant therapy in several neuromuscular conditions: Immunosuppressant therapy is the term used to describe drugs that act to suppress the immune response causing the inflammation. Myasthenia Gravis Vasculitis Dermatomyositis and polymyositis Other inflammatory muscle conditions Your doctor will advise you about what dose you start on and this will be adjusted according to your response to treatment. Mycophenolate mofetil is normally taken twice a day. Mycophenolate mofetil does not work immediately and it may be six to twelve weeks before you notice any benefit. Blood testing: Your bloods will be monitored at regular intervals and your specialist nurse will advise you of the results which you will be able to record into this booklet. alterations may be made depending on blood results or changes in condition. 4 It is important that you attend for blood tests as advised. What the terms mean : The oxygen carrying component of red blood cells. : The average volume of a red blood cell. : White blood cells. : An irregular, disc shaped element in the blood that helps in blood clotting. Neutrophils: A type of white blood cell filled with enzymes used to kill and digest micro-organisms. : A small white blood cell that plays a large role in defending the body against disease. They are responsible for immune responses. : An enzyme normally present in the liver and heart cells that is released into the blood stream when the liver or heart is damaged. Abnormally high levels may indicate that the liver is not functioning normally. ALK phos: An enzyme made in the liver which is usually released into the blood during injury. Abnormally high levels may indicate some liver damage. Gamma GT: An indicator of medication sensitivity this may become elevated if the liver has difficulty in metabolising (breaking down) the medication 13

5 Date of Blood Test 12 You must inform your consultant if you are planning to become pregnant prior to commencing mycophenolate mofetil Or if you become pregnant while on mycophenolate What else do I need to know about Mycophenolate Mofetil treatment? It is important to go to your GP if you experience any of the following: Sore throat and fever Urinary symptoms burning, frequency Productive cough Any unusual aches and pains We advise as much as possible to avoid exposure to chicken pox, if you develop chickenpox or shingles, you should see your doctor immediately. Can I take other medicines with Mycophenolate Mofetil? Always ask your doctor or pharmacist about any other medicines before you start to take them. This includes overthe-counter medicines, herbal and alternative remedies. All of these can interact with mycophenolate mofetil and affect your treatment. Travel abroad: Please refer to the manufacturers information sheet if you are thinking of travelling abroad please speak to your GP or speak to the UCLH Travel Clinic for an appointment on to discuss vaccinations. 5

6 What do I do if I forget to take my medicine? If you forget to take your medicine please read the manufacturer s information sheet inside your medication packaging. What do I do if I take too much medicine? If you take more tablets that you have been told, you must contact your doctor immediately Other advice and precautions Swallow your tablets whole with a glass of water; do not break or crush them. We advise patients who are on mycophenolate mofetil to have the seasonal flu vaccine at their GP surgery. Follow the manufacturer s guidelines. Take this booklet with you to all your medical appointments. Date of Blood Test 6 11

7 Date of Blood Test Date of Blood Test Sodium mmol/l 10 7

8 Date of Blood Test Date of Blood Test 8 9