What is nintedanib?
Nintedanib, also known as Ofev®, is an antifibrotic medication designed to try and slow the development of scarring (fibrosis) in the lungs. It doesn’t cure the condition or get rid of any scarring already in the lungs. Nintedanib won’t improve any symptoms you are experiencing but it may slow down the rate of further lung function decline.
What monitoring do I need to have while I am on nintedanib?
While you are on treatment with nintedanib you will need to have your liver function tests monitored regularly. You should contact your GP surgery to arrange an appointment to have the blood tests. 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.
You must have liver function blood tests monthly for the first 3 months you are on treatment and then every 3 months throughout the whole time you are on antifibrotic treatment.
How will I get my nintedanib?
Your nintedanib 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 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 it is in an unopened box.
If you want to stop or have stopped taking nintedanib for any reason it is important to let the Interstitial Lung Disease (ILD) team know. It can be safely stopped immediately, but we can advise and prevent further medication being delivered.
Is it safe to take nintedanib with other medications?
We will check nintedanib is safe to take with your regular mediations before you start taking it. If you are prescribed any new medications you should check with the prescriber they are safe to take with nintedanib.
You should not take nintedanib if you are allergic to peanuts or soya.
It is safe to have the pneumonia, COVID and annual flu vaccines with nintedanib.
How do I take my medication?
- The usual dose of nintedanib is 150mg twice a day.
- Nintedanib should be taken twice a day, as near to 12 hours apart as possible.
- Take the medication with, or straight after food and swallow the capsule whole (do not chew or crush).
What if I get side effects from my medication?
Nintedanib can cause some side effects although many of these can be managed with the help of your ILD specialist team.
You should read the information provided to you and be aware of the potential side effects of the medications.
Common side effects
Diarrhoea
If you are experiencing diarrhoea, please ensure you are taking your medications as prescribed with or after a meal, as this may help alleviate side effects.
You can take an anti-diarrhoea medication called loperamide that can be purchased over the counter from your community hharmacy or in most supermarkets.
You should take 2 loperamide tablets or capsules after the first episode of diarrhoea and 1 further tablet after each episode of diarrhoea up to a maximum of 8 in a day. You might need to take loperamide regularly to control the side effects.
If loperamide is controlling your symptoms, you can ask your GP to have this added to your repeat prescription.
If loperamide is not helping control your symptoms, please contact the ILD patient advice line on 0117 414 7762.
Sickness
If you are experiencing nausea or sickness ensure you are taking your medications as prescribed after food.
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.
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.
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 medication and contact your GP or 111 for advice more urgently if you experience these symptoms/ signs.
Please inform the ILD team as soon as you are able.
Does nintedanib affect pregnancy?
Do not take nintedanib if you are pregnant, planning a pregnancy or might get pregnant. We do not know enough about the risk to the unborn child.
Patients who are able to become pregnant should have a pregnancy test before starting treatment and should use highly effective birth control at the start of treatment, during treatment, and for at least 3 months after your last dose.
Oral contraception (the pill) may not work as well in those with diarrhoea or other problems that may reduce the drug absorption.
It is also not known whether nintedanib passes into breastmilk. We therefore advise that you do not breastfeed
whilst taking this medication.
Contact details
- If you need any further advice you can contact the ILD team on 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