Log In or Register to Join The Conversation!
  • 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

Copyright © 2017-2021 All rights reserved.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?


Create Account