TODAY IS THE DAY I STAND UP TO IPF. fightipf.co.uk

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1 fightipf.co.uk SUPPORTING IPF AWARENESS TODAY IS THE DAY I STAND UP TO IPF For people diagnosed with Idiopathic Pulmonary Fibrosis: A guide to help you discuss your condition and management options with your doctor Roche Products Ltd has designed and initiated the Fight IPF programme in the UK to raise awareness of IPF and its impact on patients and their carers. This booklet is funded and produced by Roche Products Ltd RXUKESBROO191g(1) Date of preparation: February 2O17

2 WHAT IT MEANS TO HAVE IPF Idiopathic Pulmonary Fibrosis, or IPF, is a disease that affects the lungs. It s a serious condition that can take a long time to diagnose, and it s relatively rare. But while many people have never heard of it, in fact, there are over 1 million people around the world living with IPF today. IPF affects your breathing, making it harder to catch your breath when you re active. Depending on how far IPF has progressed, that can mean anything from shortness of breath you only notice when exercising, to difficulty doing normal day-to-day activities, like walking outside or going upstairs. This shortness of breath happens in IPF because fragile tissue in the lungs is damaged becoming scar tissue in a process called fibrosis. The scarring gradually progresses over time, spreading to more of the lungs and making it harder to breathe. IPF IS A SERIOUS CONDITION, BUT THERE ARE THERAPIES THAT WILL HELP MANAGE ITS IMPACT TO HELP YOU HOLD ON TO YOUR WAY OF LIFE IPF behaves differently in each person who has it. Some people may only experience minor symptoms for years, while others may rapidly get worse. However, the average survival time is three to five years. There are a number of treatment options available, some of which can help relieve symptoms and others that can slow the progress of the disease. For eligible patients, there is the option of a lung transplant.

3 WHAT ARE THERE FOR IPF? THERAPIES TO HELP MANAGE THE PROGRESSION OF THE DISEASE: Lung Transplant A lung transplant is the only cure for IPF at the moment, but only a small number of patients are eligible for treatment. It is a complex procedure with risks involved, and patients have to be fit enough for a major operation and anaesthetic. Importantly, you will need to be matched with a suitable donor, which can take a long time. Your doctor will be able to help explain how the donor process works. Antifibrotic medicines There are medicines which have been developed over the past few years to treat IPF. While they can t cure the disease, they are proven to slow down the progress of IPF. With all medicines there can be side effects, but your doctor can usually help you to manage these. DISCUSS YOUR TOGETHER WITH YOUR DOCTOR AND DECIDE ON AN APPROACH WHICH IS RIGHT FOR YOU THERAPIES TO MANAGE THE SYMPTOMS OF IPF: Pulmonary rehabilitation Pulmonary rehabilitation is a programme of exercise, training and education designed to maximise the use of your lungs. Over time, the exercises and techniques will help you manage the day-to-day symptoms of IPF and stay as active as possible. Continued on next page

4 WHAT ARE THERE FOR IPF? THERAPIES TO MANAGE THE SYMPTOMS OF IPF: Cough suppressant medicines It s common for people with IPF to experience a dry cough, without any phlegm or mucus, which can be tiring or difficult to manage. If you have a cough, there are a number of medicines your doctor can offer you, called cough suppressants, which can help reduce how often you cough. Antacid medicines Antacid medicines are available for people with IPF experiencing heartburn and acid indigestion. Depending on how often this happens, there are several options your doctor can offer for these symptoms. These therapies can also be used in patients without symptoms, to prevent any damage to the lungs from acid reflux. DISCUSS YOUR TOGETHER WITH YOUR DOCTOR AND DECIDE ON AN APPROACH WHICH IS RIGHT FOR YOU Oxygen therapy Oxygen therapy can help with the feeling of breathlessness as you get more oxygen to your body. However, this is often from a tank and so can limit how easy it is to move around. As IPF progresses, long term oxygen therapy will become necessary in almost all cases. References: Raghu G, Collard HR, Egan J, et al. Am J Respir Crit Care Med 2O11; 183: Raghu G, Rochwerg B, Zhang Y, et al. Am J Respir Crit Care Med. 2O15; 192(2):

5 WHAT TO CONSIDER WHEN DISCUSSING IPF WITH YOUR DOCTOR THESE THREE STEPS WILL HELP YOU PREPARE FOR YOUR CONVERSATION: KNOW YOUR It will be helpful to find out as much as you can about your options for therapy before talking to your doctor the right approach to managing your IPF may have a big impact on your way of life. You can find out more information about IPF and therapy options at together with expert advice and support. BRING SOMEONE YOU TRUST If possible, bring someone you trust with you. Friends and family can provide the support you need before, during and after any consultation and together you can discuss the benefits and drawbacks of different therapies. You can also visit for videos showing people s experiences with IPF and and its management. TODAY IS THE DAY TO STAND UP TO IPF WHEN YOU VISIT YOUR DOCTOR, DISCUSS WHICH COULD HELP YOU GET THE MOST OUT OF LIFE SHARE YOUR GOALS Tell your doctor what matters to you and your family; this could be activities you do everyday as well as events in the future. Ask your doctor how he or she can help you achieve the goals that matter most to you. On the next page you can find a series of prompts and questions to help you to think about what you want to achieve from life.

6 GOALS AND QUESTIONS TO DISCUSS WITH MY DOCTOR MY GOALS WHAT MATTERS MOST TO ME As IPF spreads, many ordinary day-to-day activities will become harder or even impossible. Your doctor will be able to help you manage your condition, which may allow you to continue these activities for longer. In the longer term, it s important to have things to look forward to. Do you have any special occasions or goals in the future which could be affected by your IPF? Think about what matters most to you both in the short and long term and discuss your personal goals with your doctor. Understand your current therapies, and what other options are available to you: > > Which therapies am I currently being given? > > Am I taking medicines to help my cough/heartburn/ indigestion? > > What other therapies might be suitable for me? > > What are the benefits and risks of these therapies? If you can, discuss your personal goals, questions and the IPF therapy options with someone you trust. Ask them to come along to see the doctor with you too: WITH YOUR DOCTOR, CHOOSE THE THERAPIES WHICH ARE RIGHT FOR YOU Discuss your personal goals, both short and long term: > > What might help me carry on doing what matters most to me today? > > What can I do to limit the impact IPF might have on my lifestyle, to ensure I can achieve my goals?