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  • JeanDArc posted an update 2 months, 2 weeks ago

    Hi All

    I just wanted to ask, once you or your child/relative have started taking Orkambi, does the amount of chloride in sweat go down at some point and when approximately? Our 2-yo girl started Orkambi a month ago and the chloride hasn’t gone down yet so we are wondering when/if this may happen… Many thanks in advance and keep well and safe.…[Read more]

    • @jeandarc, hello! Here’s what I know about modulators, specifically Orkambi…

      I was in the clinical trial and was blinded to the results of my sweat chloride tests, but I do know they dropped over time. The Orkambi website states that in children ages 2-5: after taking Orkambi for 24 weeks, sweat chloride decreased 31.7 mmol/L on average…

      [Read more]

  • Many thanks Jenny and Julie, for your sharing your experiences, much appreciated!

    Wishing you all the best, strenght and happiness.

  • Our girl is now 2 years old and is going ot be prescribed ORKAMBI by doctors soon. I wonder if we have someone here with 2+ yo who has been prescribed ORK please – have things improved since and how? Have you been able to drop some of the usual proceedures pre-ORK medication like inhalations, Creon, sanitising everything constantly etc.? I would…[Read more]

  • HI All

    I am a Godmother of a 10 months old baby girl with CF living in Slovakia.CF was diagnosed a few weeks after the birth, we have been giving her Dekas Plus vitamins in liquid form, she’s had good results.once she is 2 years old, the doctors will start prescribing Orkambi I think. I recently learnt that there are better CF medicines than…[Read more]

  • JeanDArc became a registered member 1 year, 9 months ago

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