Talking to your Doctor

CREATE A PERSONALIZED GUIDE TO HELP YOU GET
THE MOST FROM YOUR CONSULTATION WITH YOUR DOCTOR

IPF is a serious condition, but there are treatment options that may help manage its impact and may help you stay active longer.

Discuss your treatment options together with your doctor and decide on an approach that is right for you.

The sections below will help you discuss IPF and your options with your doctor.

Preparing for your consultation

These three steps will help you prepare for your conversation:

Know your OPTIONS

IPF treatments may help you stay active longer and may have a big impact on your way of life so find out as much as you can about your treatment options. More information can be found under ‘IPF treatment options’ in the Resources Zone or in the downloadable discussion guide. It is also very important to speak to your doctor about your experience with IPF and the right approach for you. Discuss your
management
options
with your
doctor and
decide on
an approach
which is right
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 everyday activities like walking the dog or gardening as well as events in the future such as attending a wedding or graduation ceremony. Then ask your doctor how he or she can help you achieve the goals that matter most to you.

In the form below, click on as many coloured boxes as you like to build your own personalized consultation guide.

MY NEXT CONSULTATION

Time:  
Date:  

WHAT IS LIVING WITH IPF LIKE FOR YOU?

Select the IPF symptoms that impact on your life the most:

Talking to your doctor about IPF and your options

Ask someone you trust to come along to see the doctor with you, so you can choose the treatment options that are right for you.

Here are some prompts and questions to help talk about what you want to achieve from treatment:

If you can,
discuss your
personal goals,
questions and
treatment options
with someone
you trust

before your
consultation

YOUR GOALS – WHAT MATTERS MOST TO YOU

Daily goals: what are the activities that matter most to you and that you would like to hold on to?

Future goals: it’s important to have things to look forward to in the longer term. Do you have any special occasions or goals in the future where your IPF could get in the way?

MANAGING YOUR IPF

Look at the list of topics below and select the ones that matter most to you:

QUESTIONS TO ASK YOUR DOCTOR

Understand your current therapies, and what other options are available to you:

  • Which treatment options are you currently being given for your IPF?
  • Are you taking medicines for other conditions or to help symptoms such as frequent coughing?
  • What other therapies might be suitable for you?
  • What are the benefits and risk of these therapies?
Remember always
INFORM
your doctor

of any other
medications and
health conditions

Once you've completed this form, click 'review' to see a summary of your answers. You can send it to yourself, or print it out, so you can take it with you to your consultation.

MY NEXT CONSULTATION

Time: Date:
I WANT TO DISCUSS:

MY CHALLENGES:

  • Check mark COUGH
  • Check mark BREATHLESSNESS
  • Check mark DIFFICULTY EXERCISING
  • Check mark Other
  • Check mark TIREDNESS
  • Check mark LOSS OF INDEPENDENCE
  • Check mark FEELING LOW

MANAGING MY IPF:

  • Check mark HOW CAN I SLOW DOWN MY DISEASE PROGRESSION?
  • Check mark WHAT THERAPIES AM I CURRENTLY RECEIVING?
  • Check mark HOW CAN I CONTROL MY COUGH BETTER?
  • Check mark WHAT CAN I DO DAY-TO-DAY TO HELP?
  • Check mark HOW CAN I MANAGE OXYGEN THERAPY?
  • Check mark WHAT OTHER THERAPIES MIGHT BE SUITABLE FOR ME?
  • Check mark WHAT ARE THE BENEFITS AND RISKS OF THERAPIES?
  • Check mark WHEN CAN I START ANTIFIBROTIC TREATMENT TO SLOW MY ILLNESS DOWN?
  • Check mark WHAT EMOTIONAL SUPPORT IS AVAILABLE TO ME?
  • Check mark WHAT SUPPORT IS AVAILABLE TO MY LOVED ONES?

Additional Information

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 toaday and 30,000 people may be affected by IPF in Canada alone.1-3

IPF affects your breating, making it harder to catch your breath when yoe'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 on 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 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.

What treatment options are there for IPF?

Lung transplant4

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 medicines5

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 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.

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

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

PULMONARY REHABILITATION4

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 symptoms4

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, etal Eur Resp Rev. 2012; 21(126): 355-61
  2. Canadian Pulmonary Fibrosis Foundation. IPF Patient Information Guide. 2016 Accessed: http://cpFf.ca/understanding-pf/cpff-patient-guide/. Last accessed: September 2016.
  3. Meltzer E. Noble P. Orpharet J Rare Dis 2008; 3: 8.
  4. Raghu G. Collard HR, Egan J, et al Am J Respir Crit Care Med. 2011.183: 788-824.
  5. Raghu G, Rochwerg B, Zhang Y. etal. Am J Crit Care Med 2015; 192(2)-238-248.
  6. Esbriet® Product Monograph, April 2016.
  7. OFEV™ Product Monograph, October 2015.