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Thread: Taking Kalydeco while pregnant

  1. #1
    Junior Member
    Join Date
    Sep 2019
    Posts
    1

    Taking Kalydeco while pregnant

    Hi, I was just wondering if anyone has taken Kalydeco throughout their whole pregnancy, I wasn't given concrete evidence that the drug isn't harmful to the baby. I understand there hasn't been many studies due to the drug being fairly new but would like to speak to anyone who has taken it while pregnant.

    Thanks

  2. #2
    Super Moderator
    Join Date
    Sep 2016
    Posts
    130
    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!
    Last edited by jricci; 09-22-2019 at 10:47 PM.

  3. #3
    Super Moderator
    Join Date
    Sep 2016
    Posts
    130
    I just sent the webinar link to your Private Messages. Let me know if you didn't receive it. I frequently have problems with private messages not being sent or received.

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