Welcome

This Information Centre is designed for people with PPF who have been prescribed OFEV® (nintedanib). This is a challenging time, and you’re bound to have questions and worries.

The information provided is not a substitute for any advice given to you by your medical team or information within the patient information leaflet in your medicine pack.

This section of ‘your PPF support space’ was developed to support you during your treatment, helping you to understand your disease, manage your symptoms, know what to expect during your treatment with OFEV®, and providing you with tools and resources to help you live as well as you can.

If you have any questions after reading this information, or any further concerns, always talk to your medical team – they’re here to help you.

The Information Centre is divided into sections to support you in navigating to the information you need:

Disease information

Around 70,000 people in the UK live with PF – so you’re not alone. In PF, lung tissue becomes thickened, stiff and permanently scarred. This scarring is called fibrosis.

You’ve been diagnosed with a progressive form of PF, which means this scarring has shown signs of getting worse. Your illness will be referred to in this website as ‘PPF’. You may also hear your doctor use the term ‘interstitial lung disease’ (ILD); this is used to describe a large group of diseases, including PF, that involve scarring of the lungs. For most people, the cause of PF is unknown; when no cause can be found, doctors use the term ‘idiopathic pulmonary fibrosis’ (IPF).

If you want to know more about PF, IPF, or how PPF can be managed with OFEV®, follow the links below to access relevant information booklets.

How to take OFEV®

Make sure you take your medicine just as you’ve been advised by your medical team. The usual dose of OFEV® is one 150 mg soft capsule taken twice a day, about 12 hours apart. 

Please find more detailed guidance for taking your medicine appropriately below:

Never reduce or stop your dose on your own without consulting your doctor.

Do not take OFEV®:

• If you are pregnant,
• If you are allergic to nintedanib, peanut or soya, or any of the other ingredients of this medicine listed in the PIL.

Talk to your doctor or pharmacist before taking Ofev if you have or have had:
liver problems, kidney problems, bleeding problems, taken blood-thinning medicines, taken pirfenidone, heart problems, recent surgery, high blood pressure, high blood pressure in the vessels of the lungs, aneurysm or artery dissections.

The side effects listed here are not intended to replace information with the patient information leaflet (PIL). Side effect frequency may vary depending on the condition that is being treated, please refer to the PIL for further information on side effect frequency.

Not every patient on OFEV® gets side effects, but some do. Below is a list of the potential side effects associated with OFEV®.

Side effect and symptom support

Your symptoms

Symptoms are different for each person, but here are some of the most common ones:

Please read the patient information leaflet provided in your medicine pack to find out about other side effects.

Changing what you eat and drink can help manage the gastrointestinal side effects of OFEV®. 

More details on how your diet can help manage side effects, as well as eating and drinking well to maintain a healthy body weight, can be found in your PPF support space’s Picnic Area and in the ‘Making every mouthful count’ nutrition guide.

Consultation planning

Your medical team

Throughout your treatment, your medical team will schedule regular appointments to see how you’re doing. Your medical team may include:

What to tell your medical team

Your team will need to know about any medical conditions you have and what medicines you have recently taken, might take or are taking.

Doctors and nurses who specialise in managing symptoms and living well with a chronic illness.

The more your healthcare teams know about you, the better they can tailor information to your needs. For example, it can be helpful to let your healthcare teams know:

	How much you understand your condition
	If you are aware of who can help you with your condition
	If you know what you can do to help yourself in your day-to-day life
	Whether you know how your condition is managed and what your options are
	How confident you are in making your own decisions about your healthcare
	If you know what to do should you have problems managing your health
	How much your condition makes you feel anxious

It’s easy to forget to mention something important during a medical appointment. You should always try and bring a carer, family member or friend to the appointment for support, but between your visits, it can be helpful to jot down any questions you have about your health or treatment. 

Living with your illness

While there are things with PPF you can’t control, you can do a lot to help yourself live as well as possible. Leading a healthy lifestyle and taking care of both your body and your mind can make a real difference to your day-to-day well-being.

Healthy eating

Try to eat a healthy balanced diet with regular mealtimes and plenty of fruit and vegetables – it will boost your physical health but also help you feel more positive mentally. A balanced diet will also help keep you at the right weight, which is important as you may feel more breathless if you’re overweight. If you have noticed a change in weight, either gaining or losing, it is important to tell your medical team straightaway.

Exercise and physical activity

Regular exercise is important, as it helps you maintain muscle strength and it can improve your sleep. Exercise can also reduce depression and anxiety, so it’s good for your mental well-being too. But, of course, exercising isn’t easy when you’re breathless, so start with small steps and set yourself exercise goals.

Mental health and well-being

Your illness can take a toll on you emotionally, but there are things you can do to keep a positive outlook, and if your mental health is good, you’ll be more confident and better able to deal with stress and uncertainty.

Travelling

PPF is a challenging and unpredictable disease. However, with due caution and common sense, it should not preclude your ability to travel. 

Follow these links for handy checklists and advice to help you plan for your holiday.