Your patient-held blood monitoring record book. Disease-modifying treatment for multiple sclerosis (MS)

Transcription

1 Your patient-held blood monitoring record book Disease-modifying treatment for multiple sclerosis (MS)

2 Your details Your current therapy: Name: Date of birth: Hospital/clinic: Hospital number: NHS number: Your healthcare staff Consultant neurologist: Contact number: MS specialist nurse: Contact number: GP: GP surgery address: What this booklet is for This booklet has been designed to record the details of your multiple sclerosis (MS) treatment and the results of your blood and urine tests. Keep this booklet in a safe place and make sure you take it with you when you go to see your consultant neurologist, GP, MS specialist nurse or pharmacist. About MS treatment and management The drugs used to treat MS generally act in some way on the white blood cells in your body, and may affect the way these cells behave and reduce your body s ability to fight infections. MS treatments can also affect how other organs such as the liver or kidneys work. When you start the treatment, your doctor or MS nurse will explain to you how the monitoring of your treatment will be managed. This may be by your hospital team, your MS specialist nurse or your GP, or it may be shared between them. GP surgery telephone: DMT delivery company: DMT company contact number: 2 Disease-modifying treatment for multiple sclerosis (MS) Your patient-held blood monitoring record book 3

3 About blood and urine monitoring Keeping this booklet up-to-date with your blood and/or urine test results will help your doctor or nurse to understand how well your body is coping with the treatment and will help to decide whether the treatment can continue or whether it needs to be modified. It is important that while you are receiving treatment: Record of your dose/treatment Current therapy: Date therapy was started or changed Reason Dosage and frequency Name of doctor or nurse you attend your clinic appointments regularly so that you can be carefully monitored you do not miss your blood and/or urine tests Your treatment may need to be stopped if you do not have the regular blood tests which have been specified by your neurologist or nurse. 4 CVT Disease-modifying short stay unittreatment for multiple sclerosis (MS) Your patient-held blood monitoring CVT short record stay book unit 5

4 Blood and urine tests monitoring record Test date Tests required Results Hb MCV WBC Neutrophils Lymphocytes Platelets Urea Creatinine Bilirubin ALT TSH T4 Urinalysis Blood Protein Urine microscopy Other 6 Disease-modifying treatment for multiple sclerosis (MS) Your patient-held blood monitoring CVT short record stay book unit 7

5 Blood and urine tests monitoring record Test date Tests required Results Hb MCV WBC Neutrophils Lymphocytes Platelets Urea Creatinine Bilirubin ALT TSH T4 Urinalysis Blood Protein Urine microscopy Other 8 CVT Disease-modifying short stay unittreatment for multiple sclerosis (MS) Your patient-held blood monitoring CVT short record stay book unit 9

6 Blood and urine tests monitoring record Test date Tests required Results Hb MCV WBC Neutrophils Lymphocytes Platelets Urea Creatinine Bilirubin ALT TSH T4 Urinalysis Blood Protein Urine microscopy Other 10 Disease-modifying treatment for multiple sclerosis (MS) Your patient-held blood monitoring record book 11

7 What the terms mean Different laboratories may have slightly different normal values from the ones in the table below. Ask your doctor or nurse to check that these normal values are right for your local area. Terms and normal values Hb Male g/dl Female g/dl MCV fl WBC x 10 9 /L Platelets x 10 9 /L Lymphocytes x 10 9 /L Neutrophils x 10 9 /L Urea mmol/l and creatinine μmol/l Bilirubin < 20 μmol/l Explanation Haemoglobin is the oxygen-carrying protein inside red blood cells. Low levels may show that you are anaemic. The average volume of a red blood cell. White blood cells are important in fighting infections. The count can rise as a result of infection or from taking steroids. A low count may indicate that the treatment is harming the bone marrow. Platelets are essential for normal blood clotting. A low count may indicate that the treatment is harming the bone marrow or that the immune system is damaging the platelets. A type of white blood cell that has an important role in protecting your body from infections. It is expected to see some reduction in this cell count with many of the multiple sclerosis therapies. A type of white blood cell that usually increases quickly to fight infections. These are tests that help to show how your kidneys are working. This is a protein excreted in the liver. A raised level may indicate the liver is not working properly. Terms and normal values ALT/AST usually less than 40 u/l TSH mu/l Free T pmol/l Urinalysis Urine Microscopy Explanation ALT/AST are tests to see how your liver is working. Rising blood ALT/AST levels may indicate liver inflammation. Thyroid function tests. These measure the function of the thyroid gland which can either become overactive or underactive. A urine dipstick is used to tell if there is any blood or protein in the urine. These may be present if there is a urinary tract infection but can sometimes be present if there is kidney damage. The urine is sent to a pathology laboratory for microscopy to see if red cell casts are present. These are an indicator of certain types of kidney damage which occur if the immune system is attacking the kidney. If you have any questions or concerns If you have any questions or concerns about your treatment or test results then please get in touch with your MS nurse or consultant using the contact numbers at the front of the booklet. 12 Disease-modifying treatment for multiple sclerosis (MS) Your patient-held blood monitoring record book 13

8 Further information The following organisations are able to offer further information and support: MS Society MS National Centre (MSNC) 372 Edgware Road London NW2 6ND Tel: Fax: My notes Use this space to record anything you wish to make a note of, such as questions you would like to ask your healthcare professional next time you meet. Multiple Sclerosis Trust Spirella Building Bridge Road Letchworth Garden City Hertfordshire SG6 4ET Tel: Free phone information service: Fax: info@mstrust.org.uk 14 Disease-modifying treatment for multiple sclerosis (MS) Your patient-held blood monitoring record book 15

9 Multiple sclerosis team Wessex Neurological Centre Southampton General Hospital Tremona Road Southampton SO16 6YD Multiple sclerosis office telephone: If you need a translation of this document, an interpreter or a version in large print, Braille or on audiotape, please telephone for help University Hospital Southampton NHS Foundation Trust. All rights reserved. Not to be reproduced in whole or in part without the permission of the copyright holder. Version 1. Published March Due for review March