CFTR modulators
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Cystic fibrosis medication (CFTR modulators) can be used in pregnancy.
What are CFTR modulators?
CFTR modulators are medicines used to treat cystic fibrosis (CF). Examples include: deutivacaftor, elexacaftor, ivacaftor, lumacaftor, tezacaftor and vanzacaftor. Some CF medicines contain combinations of CFTR modulators. Brand names of these combination medicines include: Kaftrio®, Symkevi®, Orkambi®, Alyftrek®, and Kalydeco®.
Benefits
What are the benefits of using a CFTR modulator in pregnancy?
CFTR modulators treat CF by reducing the build-up of thick, sticky mucus in your body. This helps to control the problems caused by CF, including chest infections and damage to your lungs, pancreas and other organs.
Using CFTR modulators improves your lungs and makes sure that you can get the nutrients that you need from food. Good treatment of your CF reduces the chances of pregnancy complications such as preterm delivery and low birth weight in the baby.
Risks
What are the risks of using a CFTR modulator during pregnancy?
There is not much information on use of CFTR modulators in pregnancy. However, there is no indication that these medicines will harm your baby. They are very good treatments, and many people have seen a big improvement in their disease with CFTR modulator use.
Alternatives
Are there any alternatives to using a CFTR modulator in pregnancy?
Probably not. CFTR modulators are the most effective treatment for CF. Your specialist is likely to recommend that you continue CFTR treatment during pregnancy to keep both you and your baby as healthy as possible.
No treatment
What if I prefer not to use CFTR modulators in pregnancy?
It is vital that CF remains well-controlled while you are pregnant. If your doctor has prescribed a CFTR modulator, it is important to take it as recommended.
Are there any risks to my baby if the father uses a CFTR modulator?
There are no concerns that a CFTR modulator used by the father around the time of conception can harm your baby through effects on sperm.
Will I or my baby need extra monitoring during pregnancy or after delivery?
As part of routine antenatal care in the UK, you will be offered a very detailed scan at around 20 weeks of pregnancy to check the baby’s development. No extra monitoring is required due to use of a CFTR modulator. However, your baby’s growth will be more closely monitored in later pregnancy as CF can lead to the baby being smaller than average, and you will be cared for by an obstetrician during pregnancy due to your CF.
Who can I talk to if I have questions?
If you have any questions regarding the information in this leaflet, please discuss them with your health care provider. They can access more detailed medical and scientific information from www.uktis.org.