What is pirfenidone?
Pirfenidone, also known as Esbriet®, is an anti-fibrotic medication which has been shown to slow the progression of Idiopathic Pulmonary Fibrosis (IPF). It doesn’t cure the condition or reverse any existing scarring but it may slow down the rate of further lung function decline.
In the UK, pirfenidone is currently only approved for treating,IPF and not for other forms of pulmonary fibrosis.
Pirfenidone can be started if your lung function is within the criteria decided by NHS England (Forced Vital Capacity 50-80% predicted).
What monitoring do I need to have while I am on pirfenidone?
While you are on treatment with pirfenidone you must have your liver function monitored monthly for the first 6 months and then every 3 months for the whole time you are on treatment.
You should contact your GP surgery to arrange an appointment to have the blood tests taken. Your GP will not contact you to arrange this. If your GP cannot help you with this please contact your normal hospital to make arrangements.
It is very important you do not stop having blood tests. It is a good idea to mark these on your calendar as a reminder. If you do not have your liver function monitored we are unable to supply medication.
How will I get my pirfenidone?
Your pirfenidone will be delivered to your house by a company called Polar Speed. They will usually contact you within 3 weeks of your appointment at Southmead hospital to arrange dates for delivery. If you have any queries about your deliveries you can contact Polar Speed directly on 0800 783 3178.
It is a good idea to have 2 weeks extra supply of medication in case there are any issues with deliveries.
We would ask you not to build up any more than 1 month extra supply of medication. Once a medicine is delivered to your house it cannot be returned even if the box is unopened.
If you want to stop or have stopped taking pirfenidone for any reason, please discuss this with us. It can be safely stopped immediately, but we can advise and prevent further medication being delivered.
Is pirfenidone safe to take with other medications?
We will check pirfenidone is safe to take with your regular medications before you start taking it. If you are prescribed any new medications you should check with the prescriber they are safe to take with pirfenidone. It is safe to have the pneumonia, flu and COVID vaccinations whilst on pirfenidone.
How do I take my pirfenidone?
It is important that you take your pirfenidone at regular intervals with or after meals.
Week 1
One tablet (267mg) three times a day.
Week 2
Two tablets (534mg) three times a day.
From week 3 onwards
Three tablets (801mg) three times a day (full dose).
Pirfenidone is only effective for as long as you take it, so if you have a good response, we may recommend that you continue taking it for a long time.
We will usually advise that you stop pirfenidone if you are having difficult side effects or if your lung function continues to fall by 10% or more in one year despite taking the medication as prescribed.
What if I get side effects from my medication?
You should read the information provided to you and be aware of the potential side effects of the medication. We would advise that you contact the team in the event of persistent new symptoms.
Common side effects
Sun sensitivity
Pirfenidone can make your skin more sensitive to the sun. Therefore it is important that you wear a factor 50 sunscreen that blocks out UVA and UVB rays while you are taking pirfenidone.
It is a good idea to cover up and to try and avoid direct sunlight particularly during the hottest part of the day.
Some antibiotics such as doxycycline can make your skin more sensitive to sun you should avoid taking these alongside pirfenidone.
Weight loss and loss of appetite
Some people find that they lose weight or experience loss of appetite while on antifibrotic medication. It is a good idea to weigh yourself weekly to keep an eye on this. If you are finding it difficult to eat bigger meals eating smaller meals more often or adding in snacks between meals can be helpful.
If you are losing weight and are worried about this, please contact your specialist centre for advice.
Sickness
If you are experiencing nausea or sickness ensure you are taking your medications as prescribed after food. Splitting your doses through your meal may help.
Some people find ginger useful for managing nausea. This could be in the form of tea, capsules or even biscuits.
It is safe to take anti-sickness tablets with antifibrotics, please see your community pharmacist for advice.
Uncommon side effects
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Yellowing of skin or eyes
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Excessive itching
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Unexplained bruising or bleeding
Please stop taking your pirfenidone and contact your GP or 111 for advice more urgently if you experience these symptoms/signs. Please let the Interstitial Lung Disease (ILD) team know as soon as you are able.
Contact details
- If you need any further help or advice you can contact the ILD team on our patient telephone advice line: 0117 414 7762. This is an answering machine service; leave a message and someone will get back to you within 48 hours (except at the weekend/bank holidays).
- If you prefer to use email you can also contact the team on ILD@nbt.nhs.uk.
- If you feel suddenly unwell please contact your GP or access emergency care via 111, your local A&E or by dialling 999.
How to contact us
Interstitial Lung Disease (ILD) team
If you or the individual you are caring for need support reading this leaflet please ask a member of staff for advice.
If you’re an overseas visitor, you may need to pay for your treatment or you could face fraud or bribery charges, so please contact the overseas office: Tel: 0117 414 3764 Email: overseas.patients@nbt.nhs.uk