@jeandarc
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JeanDArc started the topic Hello dear friends, in the forum Friends and Family of people with Cystic Fibrosis 8 months, 1 week ago
Hello dear friends,
our 3yo girl has been taking Orkambi for 12 months. Her doctor has increased her doses of Creon and Solmucol – do you have similar experiences please, as we were under the impresion the doses of other medicine should have been reduced not increased ..? Many thanks for any advice and experiences.
A.
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JeanDArc posted an update 1 year, 7 months 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]
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JeanDArc replied to the topic Godmother of 10months old baby with CF in the forum Introductions 1 year, 9 months ago
Many thanks Jenny and Julie, for your sharing your experiences, much appreciated!
Wishing you all the best, strenght and happiness.
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JeanDArc replied to the topic Godmother of 10months old baby with CF in the forum Introductions 1 year, 9 months ago
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]
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JeanDArc started the topic Godmother of 10months old baby with CF in the forum Introductions 3 years, 2 months ago
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]
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JeanDArc became a registered member 3 years, 2 months ago
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Hi JeanDArc! I’m one of the forum moderators, Tré. How are you today? We’re encouraging new members to go introduce themselves in the Introductions topic, if you don’t mind!
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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]