Treatment

Your healthcare team

You may have a team of healthcare professionals helping you, called a multidisciplinary team (MDT). You’ll get to know some of them well, like your specialist doctor, general practitioner (GP), the lung function testing team, respiratory nurses and physiotherapists.

A physiotherapist usually leads your pulmonary rehabilitation team. Other specialists like dietitians, occupational therapists and rheumatologists will also be involved to help you live your best life.

Radiologists and pathologists are often working behind the scenes. They’ll be a big part of your initial diagnosis and help check your progress along the way.

Current treatments

PF can have different causes. Knowing what caused your PF will help your specialist doctor choose the best treatment for you. Here’s a general overview of some treatments they might offer. Remember, this isn’t medical advice.

Some treatments work well for some people, but not everyone. Talk to your specialist doctor to make sure you’re getting the right treatment. Always talk to them before starting, changing or stopping any treatment.

Antifibrotics

Pirfenidone and nintedanib are medications that can help slow down scarring in your lungs. They’re used if you’ve been diagnosed with idiopathic pulmonary fibrosis (IPF) or progressive pulmonary fibrosis (PPF). These medications might help slow down how quickly IPF or PPF can get worse. The Australian government helps pay for these medications for people who meet specific requirements.

Immunosuppression

Some types of PF are caused by inflammation in the lungs. This is often linked to autoimmune diseases like rheumatoid arthritis, scleroderma, Sjögren’s syndrome, dermatomyositis, polymyositis, and antisynthetase syndrome. These conditions are often treated with medications like prednisolone, mycophenolate and azathioprine. Your specialist doctor will choose the best combination of these medications for you.

Oxygen therapy

You may need oxygen therapy if your blood oxygen levels get low. You might only need it at night or when you exercise. Later on, you may need it all the time.

Pulmonary rehabilitation

This is a program of exercise and education run by trained professionals. It teaches you how to manage your breathlessness and stay well. Ask your healthcare team about getting referred to a program near you. If there isn’t one nearby, a physiotherapist or exercise physiologist can help you with an exercise program. Talk to your doctor about getting a management plan to help pay for visits to a physiotherapist or exercise physiologist.

Lung transplant

A lung transplant might be an option for some people, but not everyone. Whether it’s right for you depends on your age, other health problems, and how severe your PF is. Your specialist doctor can tell you if it’s an option and when you should be referred to a transplant unit.

Clinical trials

These are research studies that test new treatments. They’re important for PF as there aren’t many treatment options. If you join a trial, you might get access to a new treatment early. But there’s no guarantee it will work. It can also mean you have more check-ups with your healthcare team. Learn more at the PF Australasian Clinical Trials (PACT) network website.

Palliative care

Many people think that palliative care is just for the end stage of your life. However, that’s not correct. It’s more about managing symptoms and helping you live well, which can be important at any stage of life. People who start palliative care early often have better symptom management. It’s normal for people with PF to start palliative care early on, alongside other treatments.

Other things you can do

There are lots of things you can do to take better care of yourself, including:

• Quitting smoking
• Eating a healthy diet
• Staying active
• Keeping your vaccinations up to date
• Treating any chest infections
• Getting emotional support

Looking after your mental health is also important. Dealing with a diagnosis like PF can be tough. With a lot of information to learn and big decisions to make, it’s normal to feel anxious or depressed. Just remember that you’re not alone, and support is available. Talk to your doctor about how you’re feeling.