Frequently Asked Questions (FAQs) about IPF

FREQUENTLY ASKED QUESTIONS (FAQS) ABOUT IDIOPATHIC PULMONARY FIBROSIS (IPF)

What is idiopathic pulmonary fibrosis (IPF)? What causes IPF? How common is IPF? Is there a cure for IPF? What happens when someone has IPF? How long do people live with IPF?

Not everyone wants to know this information right away after their diagnosis. If you do not feel ready yet, you might decide to come back and look at this section later.

IPF behaves differently in each person who has it, so survival from diagnosis is variable. Some people may only experience minor symptoms for years, while others may rapidly get worse. Before the availability of approved therapy, studies showed that the average survival time for IPF patients was three to five years. Today, people with IPF may be able to live for longer. There are a number of treatment options available, some which can help relieve symptoms and others that can slow the progress of the disease. For eligible patients, there is also the option of a lung transplant.

What treatment options are available for IPF?

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

A lung transplant is the only cure for IPF at the moment but risks are involved and not everybody is eligible. Importantly, you will need to be matched with a suitable donor, which can take a long time.

There are also medicines that have been developed to treat IPF. These IPF medicines, called antifibrotics, help to reduce inflammation and slow down the rate of scarring in the lungs. While not a cure, this may slow the progress of the disease, increasing the chances of longer survival. As with all medicines there can be side effects, but your doctor can usually help manage these.

Pulmonary (lung) rehabilitation, which combines exercise, breathing techniques and other support, helps people manage and live with IPF. 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.

Click here to find out more about treatment options for IPF

Is it important to start treatment quickly? How can I get the best care for IPF? What other steps can I take to help myself?

Taking good care of yourself can help you feel better, and give you the best chance to stay active so you can do the things you want to do.

If you smoke, it’s important to talk to your doctor about trying to stop. It can be difficult to stop smoking but with the right support, you can do it. Making this change will make a very positive difference to your wellbeing.

Eating a healthy diet is also key. If you don’t feel like eating much or if you’re losing weight, a dietitian can give you helpful advice on nutrition.

Regular exercise is good, too. Try setting some manageable goals so you stay motivated. You might be able to get professional advice on the best ways to exercise, through a programme of pulmonary rehabilitation.

How can family and friends support someone with IPF?

If you care about someone who has IPF, your support is very important to their wellbeing.

Learn as much as you can about the condition, and encourage your loved one to talk to their doctor about what can be done. There are IPF medicines that may help slow down the condition, and the sooner these can be started, the better. Your loved one may also be able to get support with exercise, breathing techniques, diet, and emotional issues. At an early stage of the condition, some people can manage aspects of everyday life on their own. At the other end of the spectrum, people with more severe symptoms may need help with almost all of their day-to-day activities. Whatever your loved one’s practical needs may be, right now just knowing that you care and are there to help will make a positive difference.

Don’t forget to look after yourself too. Keep in touch with friends and carry on with your hobbies and interests as much as you can. If it’s hard to get enough sleep, make this a priority and try to make practical arrangements that will help you do this. Getting help at home can give you a break. Support groups can be an important source of outside help and understanding. Everyone needs help and support now and again, so if you start to find it hard to cope, don’t be afraid or embarrassed to ask your doctor for help.

Click here for more information on living with and caring for someone with IPF

How can I help my loved one manage their symptoms?

Breathlessness is one of the main symptoms of IPF, and it can be distressing and frightening. But there are ways to cope with it.

Just slowing down can help: it may take longer to get things done, but taking things at a slower pace is sometimes the answer. If an activity is getting too difficult, think about different, easier ways to do it. A physiotherapist or occupational therapist can help with practical solutions.

Emotions can affect breathing too. Look for ways to calm down and relax, such as reading a book or listening to music.

Some people find that having a window open, or a fan blowing, can help with breathlessness.

There are also breathing techniques that can help you feel better. These can be learned as part of a pulmonary rehabilitation programme.

This website is for the general public

Frequently Asked Questions

Frequently
Asked
Questions