Pirfenidone

What is pirfenidone?

Pirfenidone, also known as Esbriet®, is an anti-fibrotic medication that has been shown to slow the progression of Idiopathic Pulmonary Fibrosis (IPF). It does not cure the condition or reverse any existing scarring, but it may slow down the rate of lung function decline by about 50%. 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 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. You must not stop having blood tests, and it is good practice to mark tests on a 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 2 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 7833178. It is a good idea to have at least 2 weeks’ extra supply of medication at all times, we would ask you not to build up any more than 1 month’s extra supply of medication. Once a medicine is delivered to your house it cannot be returned. If you want to stop taking pirfenidone for any reason, please discuss this with us. It can be safely stopped immediately, but we can advise and prevent further medication from 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 pneumonia, flu and COVID vaccinations whilst on pirfenidone.

How do I take my pirfenidone?

You must 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
  • 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 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 you must 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 sunlight, so you should avoid taking these alongside pirfenidone.

Sickness

If you are experiencing sickness ensure you are taking your medications as prescribed after food. Splitting your doses through your meal may help.

It is safe to take anti-sickness tablets with antifibrotics, please see your community pharmacist for advice.

Weight Loss

Some people find that they lose weight while on antifibrotic medication. It is a good idea to weigh yourself weekly to keep an eye on this.

If you are losing weight and are worried about this, please contact your specialist centre for advice.

Diarrhoea

If you are experiencing diarrhoea ensure you are taking your medications as prescribed with or after a meal. Splitting your doses through a meal may help.

You can take an anti-diarrhoea medication called loperamide that can be purchased over the counter from your community pharmacy or in most supermarkets.

If you need to use this regularly your GP can add it to your repeat prescription.

Uncommon side effects

  • Yellowing of skin or eyes
  • Excessive itching
  • Unexplained bruising or bleeding

Please contact the ILD service for advice more urgently if you experience these symptoms/signs.

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 at 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.

Stop taking your medication straight away and contact your specialist centre.

© North Bristol NHS Trust. This edition published May 2022. Review due May 2024. NBT003473

Pirfenidone