Nintedanib use for IPF

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Kathryn Hardy
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1 Nintedanib use for IPF (Idiopathic pulmonary fibrosis) Information for patients

2 Background IPF is a serious lung disease which causes scar tissue to form within the lungs. The lungs then become smaller and stiffer resulting in patients becoming short of breath, and in more severe cases needing to use oxygen therapy. IPF is a progressive disease (meaning symptoms usually worsen over time) but the rate at which it progresses does vary from patient to patient. The cause of IPF is unknown. Nintedanib is an approved therapy for patients with this condition. It has been studied in clinical trials and the results suggest that it slows down the progression of the disease by half compared with not taking any drug. Taking the medicine Nintedanib is taken as one 150mg tablet twice a day. This is the full dose. If you develop any side effects, please contact us for advice. We may have to reduce the dose (100mg tablets initially supplied are for this purpose). If you cannot tolerate the medicine with or without the help of other treatments, or if it doesn t work for you it may need to be stopped. There are alternatives available for some patients. In an emergency please call NHS 111 or visit your local emergency department. Monitoring You will need blood tests every month for the first six months to monitor for changes in your liver function tests. After the first six months, if your blood results remain stable, blood tests will be required at three-monthly intervals. Please record your blood results in this booklet and bring along to clinic. Delivery The drug can be collected from University Hospital Southampton or delivered to your home. You will need to provide us with your full address, phone number and/or address. Please ensure your phone has a facility to leave messages so we can contact you to arrange delivery. Side effects and when to contact us The most common side effects are stomach upset and diarrhoea. Other side effects include liver dysfunction, this is why we need to check your blood test results. Please contact us if your skin becomes yellow, or your urine becomes darker, and we will advise what to do. Interactions You should let your doctor know about all the medicines that you are taking (including over the counter medicine) before starting Nintedanib. You should not take the following drugs with Nintedanib: amiodarone atazanavir azithromycin boceprevir carbamazepine ciclosporin clarithromycin darunavir erythromycin itraconazole ketoconazole lopinavir phenobarbital pheytoin pridone quinidine rifampicin ritonavir saquinavir St Johns Wort telaprevir telithromycin verapamil voriconazole There is a significant risk of bleeding when Nintedanib is used with drugs such as warfarin, apixaban, rivaroxaban or dabigatran. Stopping the medicine If the medicine is not effective at slowing the decline in your pulmonary function (PFTs) it will be stopped following discussion with your respiratory consultant. If you want to stop taking the drug for any reason it can be stopped immediately, but please let us know. Contact us If you have any questions about anything covered in this booklet, please contact: Sarah Quarrell, ILD Nurse Specialist The Respiratory Centre, D level, West Wing, Southampton General Hospital, Tremona Road, Southampton, SO16 6YD Tel: Sarah.Quarrell@uhs.nhs.uk 2 Nintedanib use for IPF Nintedanib use for IPF 3

3 Monitoring results Monitoring results 4 Nintedanib use for IPF Nintedanib use for IPF 5

4 Monitoring results 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. - a small white blood cell that plays a large role in defending the body against disease. They are responsible for immune responses. - a type of white blood cell filled with enzymes used to kill and digest micro-organisms. - an enzyme normally present in the liver and heart cells that is released into the bloodstream 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. and creatinine - substances normally cleared from the blood by the kidneys. Increased blood levels of urea and creatinine indicate that kidneys may not be functioning normally. 6 Nintedanib use for IPF Nintedanib use for IPF 7

5 University Hospital Southampton NHS Foundation Trust Tremona Road Southampton SO16 6YD Main switchboard: 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 February Due for review February

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