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Information
Nintedanib and Pirfenidone - antifibrotics for pulmonary fibrosis
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Your pulmonary fibrosis treatment will depend on your condition. Although there is no cure for pulmonary fibrosis at present, recent studies suggest that antifibrotic medications can reduce the rate of scarring.
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What are antifibrotics?
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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.
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Download nintedanib information booklet
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Download pirfenidone information booklet
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I struggled on one antifibrotic so was started on the other – and now I can say I don’t know I’m taking it
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Privately purchasing antifibrotic medication
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Private purchase
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.
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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.
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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.
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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.
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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.
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Other medications
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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.
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Our website and resources provide general information only. We cannot provide medical advice, treatment or prescriptions, nor can we assess/decide what services or clinicians you should be referred to. Support with these matters will need to be provided by your existing healthcare professional teams.
APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on our website or in our resources.
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