Nintedanib and Pirfenidone - antifibrotics for pulmonary fibrosis

What are antifibrotics?

Antifibrotic medications like nintedanib and pirfenidone can slow down the build-up of scar tissue or fibrosis in the lungs and can be used to treat pulmonary fibrosis. These treatments may reduce the rate that your lung fibrosis progresses but they don’t stop the lung scarring completely or get rid of any scar tissue that has already formed.

You can also find out about other treatments for hypersensitivity pneumonitis or autoimmune diseases, such as rheumatoid arthritis and systemic sclerosis.  

Nintedanib (Ofev®)

Nintedanib is an antifibrotic medication used to treat pulmonary fibrosis.  Your medical team will prescribe you nintedanib for as long as it’s helping you, unless you have significant side effects.

• Take nintedanib twice a day, ideally 12 hours apart, with or straight after food. Don’t chew or crush the capsule, but swallow it whole.
• Most people take 150mg of nintedanib twice a day. If your body can’t tolerate this dose, your medical team may put you on 100 mg twice a day if they think a reduced dose will help you.
• If you’re on nintedanib, your medical team will monitor you regularly to check it’s working and help you manage any side effects. You will also have regular blood tests to make sure your liver is healthy.
  

Need to know about nintedanib and side effects

• You cannot take nintedanib if you are allergic to soya or peanuts.
• The most common side effect is loose bowel motions or diarrhoea. You might also have nausea, vomiting, loss of appetite or abdominal pain.
• Occasionally, you may experience liver inflammation or bleeding such as nose bleeds.
• Sometimes there can be problems with nintedanib if you’re taking other medications. Make sure you discuss your medical history with your medical team -especially if you’re on blood thinning medications, you’ve had problems with your heart, you have allergies or you have any recent or planned surgeries.
• Some medicines can increase the risk of side effects. These include ibuprofen and other non-steroidal anti-inflammatory drugs, certain antibiotics and some immunosuppressant drugs.
• You can drink a small amount of alcohol with nintedanib (no more than the recommended number of units a week).
• Other manufacturers can market generic versions of pirfenidone. The generic versions will be the same as the branded medicine Esbriet® because they contain the same active ingredients. There are no generic alternatives to Esbriet® currently available in the UK.

Download nintedanib information booklet

Download or order nintedanib patient information (PDF)

Download or order nintedanib patient information in Urdu (PDF)

I struggled on one antifibrotic so was started on the other – and now I can say I don’t know I’m taking it.

Pirfenidone (Esbriet®)

Pirfenidone is an antifibrotic pulmonary fibrosis treatment. Your medical team will prescribe you pirfenidone for as long as it’s helping you, unless you have significant side effects.

• Take pirfenidone three times a day, with or straight after food.  Swallow the tablet whole and don’t chew or crush it.
• The full dose of pirfenidone is 801mg three times a day.  You will start on a lower dose and over a few weeks, you’ll work up to the full dose.  If you experience side effects, your medical team may reduce the dose.
• Your medical team will monitor you regularly and help you manage any side effects. You will also have blood tests to make sure your liver is healthy.
• Other manufacturers can market generic versions of pirfenidone. The generic versions will be the same as the branded medicine Esbriet® because they contain the same active ingredients.
  

Need to know about pirfenidone and side effects

• The most common side effect is photosensitivity (a skin reaction to daylight).  You should avoid the sun and cover up with long sleeves, gloves and a hat. You should also wear factor 50 sunscreen all year round for additional protection.
• You might have nausea, vomiting, loss of appetite or indigestion. Taking pirfenidone with food can help to reduce these side effects.
• You may also experience liver inflammation or fatigue.
• Sometimes there can be problems with pirfenidone if you’re taking other medications.  Make sure you discuss your medical history with your medical team -especially if you’re taking antibiotics, indigestion medication, CYP1A2 inhibitors or medicines for heart disease.
• Smoking reduces the effectiveness of pirfenidone.  You are advised not to smoke whilst taking pirfenidone.
• You are advised to avoid grapefruits and grapefruit juice.
• You can drink a small amount of alcohol with pirfenidone (no more than the recommended number of units a week).

Download pirfenidone information booklet

Download or order pirfenidone patient information (PDF)

Download or order pirfenidone patient information in Urdu (PDF)

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Privately purchasing antifibrotic medication

Some people face long waiting times to be diagnosed and prescribed antifibrotics by a specialist ILD team. This can be an anxious time, and some people consider purchasing antifibrotic treatments privately, before a formal diagnosis and treatment plan are agreed upon with an ILD team.

At APF, we do not recommend the private purchase of antifibrotic treatments. They can have serious side effects and require regular monitoring by an ILD specialist team. If you privately purchase antifibrotics, you won’t have access to regular specialist monitoring and care, and may be putting your health at further risk.

We recognise that being on a waiting list can be distressing. If you have questions or need someone to talk to, our support line team is here for you.

You can also contact your local Patient Advice Liaison Service (PALS). PALS can support you with questions or concerns related to your care and help you get the most from your NHS services.

Reducing wait times

We are determined to improve the time it takes to access antifibrotic medications. #OneVoiceILD is our movement to bring together people affected by pulmonary fibrosis, politicians and pulmonary fibrosis experts across the UK. #OneVoiceILD is working to improve pulmonary fibrosis care, including reducing the wait to start treatment. Get in touch with us at OVILD@actionpf.org to find out how you can support our work.

Other medications

You may also be offered other treatment – such as medications to help manage a cough or breathlessness, and over-the-counter medicines and advice to manage acid reflux.