TODAY IS THE DAY I STAND UP TO IPF. fightipf.ca. Talking to your doctor about IPF and your options

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1 fightipf.ca SUPPORTING PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS TODAY IS THE DAY I STAND UP TO IPF Talking to your doctor about IPF and your options

2 WHAT IT MEANS TO HAVE IPF Idiopathic Pulmonary Fibrosis, or IPF, is a disease that affects the lungs. It s a chronic condition that can take a long time to diagnose, and it s relatively rare. While many people have never heard of it, over one million people around the world live with IPF today and 3O,OOO people may be affected by IPF in Canada alone. 1 3 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 when exercising, to difficulty doing normal day-to-day activities, like walking outside or going upstairs. This shortness of breath occurs in IPF because fragile tissue in the lungs is damaged and becomes scar tissue, in a process called fibrosis. This scarring gradually progresses over time, spreading to more of the lungs, making it harder to breathe. IPF IS A SERIOUS CONDITION, BUT THERE ARE THAT MAY HELP MANAGE ITS IMPACT IPF behaves differently in each person who has it, so it s hard to predict how fast the scarring will spread. Sometimes it happens very quickly, over a period of months, other times it takes several years. 1 Unfortunately, whether IPF spreads slowly or quickly, eventually it will be fatal in most cases.

3 WHAT ARE THERE FOR IPF? LUNG TRANSPLANT 4 A lung transplant is the only cure for IPF at the moment, but only a few people are eligible for a transplant. There are risks involved, and 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. IPF MEDICINES 5 There are medicines which have been developed over the past few years to treat IPF. While it is not completely understood how these medications work, studies show that they can help reduce inflammation and fibrosis, which in turn may slow down the progress of the disease but are not a cure. Slowing the disease progression offers people with IPF the opportunity to continue doing the things that matter the most to them. With these medicines, side effects can include nausea, diarrhea, vomiting, decreases in weight and/or appetite and abnormal blood tests, 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

4 WHAT ARE THERE FOR IPF? Health Canada has authorized for sale two medications for the treatment of IPF: ESBRIET (PIRFENIDONE) What the medication is used for: 6 ESBRIET is used for the treatment of Idiopathic Pulmonary Fibrosis (IPF) in adults. What it does: 6 How ESBRIET works is not yet fully understood. It may reduce inflammation and fibrosis in your lungs. It may slow down worsening of your IPF. ESBRIET should only be prescribed and monitored by physicians with the appropriate training and experience in the diagnosis and treatment of IPF. Side effects may include: 6 > Increased Sensitivity to Sunlight: skin reactions after going out in the sun or using sunlamps, sunburn > Skin problems such as rash, itchy skin, skin redness, dry skin > Tiredness, feeling weak or feeling low in energy > Indigestion, heartburn, acid reflux, loss of appetite, anorexia, changes in taste, bloating, abdominal pain and discomfort > Infections of the throat or the airways going into the lungs and/or sinusitis, influenza and/ or common cold > Difficulty sleeping, feeling sleepy > Headache > Muscle pain, aching joints/joint pains > Weight loss > ESBRIET may cause liver problems and other abnormal blood test results. Your doctor will decide when to perform blood tests and will interpret the results

5 WHAT ARE THERE FOR IPF? OFEV (NINTEDANIB) What the medication is used for: 7 Use OFEV to treat Idiopathic Pulmonary Fibrosis (IPF) in adults. What it does: 7 OFEV works to reduce the fibrosis in your lungs. OFEV should only be prescribed and monitored by physicians with the appropriate training and experience in the diagnosis and treatment of IPF. Side effects may include: 7 > Diarrhea may lead to a loss of fluid and important electroylytes in your body > Constipation > Gas > Heartburn > OFEV can cause abnormal blood test results. Your doctor will decide when to perform blood tests and will interpret the results

6 WHAT ARE THERE FOR IPF? PULMONARY REHABILITATION 4 Pulmonary rehabilitation is a programme of exercise, training and education designed to maximize 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. THERAPIES FOR IPF SYMPTOMS 4 Your doctor may offer you other therapies to help with the symptoms of IPF, such as breathlessness, but they do not manage how the condition progresses. 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. Tell your doctor about other symptoms you are experiencing. References: 1. Nalysnyk L, et al. Eur Resp Rev. 2O12; 21(126): Canadian Pulmonary Fibrosis Foundation. IPF Patient Information Guide. 2O16. Accessed: Last accessed: September 2O Meltzer E, Noble P. Orphanet J Rare Dis. 2OO8; 3: 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): Esbriet Product Monograph, April 2O OFE V TM Product Monograph, October 2O15.

7 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 treatment options - IPF treatments may have a big impact on your way of life. More information about the treatment options for IPF can be found on fightipf.ca under IPF treatment options. It is also very important to speak to your doctor about your experience with IPF and the right approach for you. 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 make the best decision on treatment. 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 talk about what you want to achieve from treatment. 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 Remember, always inform your doctor of any other medications and health conditions.

8 TALKING TO MY DOCTOR ABOUT IPF AND MY MY GOALS WHAT MATTERS MOST TO ME As IPF spreads, many ordinary day-to-day activities will become harder or even impossible. Some treatment options may help you to continue these activities for longer. Daily goals What are the activities that matter most to you and that you would like to hold on to? Future goals 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 where your IPF could get in the way? QUESTIONS WHAT TO ASK MY DOCTOR Understand your current therapies, and what other options are available to you: > > Which treatment options am I currently being given for my IPF? > > Am I taking medicines to help my symptoms or other conditions? > > 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 treatment options with someone you trust. Ask them to come along to see the doctor with you too, and remember: STAND UP TO IPF AND WITH YOUR DOCTOR, CHOOSE THE 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? > > Which IPF treatment options might best help me to achieve my future goals? Remember, always inform your doctor of any other medications and health conditions.