The Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) hosted a webinar by Dr. Jennifer Taylor-Cousar on CFTR modulators and your Sexual Health back in January. Modulators and pregnancy and lactation was one of the topics. Check your personal messages for the link to the webinar. Lots of great information.
One of the key points was that there is evidence of risk of stopping modulators suddenly after being on them for a period of time. When stopping suddenly, lung function could deteriorate to a point that is worse than prior to starting modulator.
https://www.ncbi.nlm.nih.gov/pubmed/29079142
This was also seen in Phase 2 clinical trials of the triple combo when patients were taken off of study drug.
Data collected (I think there were 8 cases) revealed no evidence of harm to the infant that was exposed to Orkambi during pregnancy.
The CF Roundtable had a great story on one mother’s journey of her pregnancy while on Kaydeco:
https://www.cfroundtable.com/spring-2019
Here are a few other articles on topic from her blog:
http://blog.cindybaldwinbooks.com/2015/
Hope this helps! Good luck to you!
