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Thread: symdeco

  1. #1
    Junior Member
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    symdeco

    Is anyone taking symdeko for their CF I just started it and I am so congested and cant get my phlegm up. Any body have these side effects. This is my 3rd week

  2. #2
    Super Moderator
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    Were you on Orkambi before? Probably just "the purge", your body adjusting and trying to get all that junk up. Have you tried increasing vest/cpt and nebulizer treatments, drinking lots of water...?
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
    Senior Member
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    I started out on Orkambi first then switched to Symdeko. If you're just started your first CF corrector med, you're going to go through a purging period. It's tough, but worth it. Like Ratatosk said increase airway clearance and drink a lot of water (I add crystal light to mine and it makes getting in a lot of water so much easier.) Keep your doctors updated with how you feel. Sometimes they might need to throw you on IV meds to help get you through the purge period.

  4. #4
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    mstein,

    I switched to Symdeko this past March, after taking Kalydeco for four years. When I started the Kalydeco, I too brought up loads of "crap". The volume of phlegm was MUCH more than usual, and it was mush thinner. For me, this lasted less than a week. That was more than four years ago. My cough hasn't returned since, except for three periods when I couldn't take the Symdeko or Kalydeco.

    As others have said, hopefully your present congestion is just a result of the Symdeko thinning out the crap that has built up in your lungs.

    Good luck
    77 Y/O with CF (D1152H and G542X) and Broncheiectesis.
    FEV1 Low 40s%.
    Started Kalydeco March 2014, Switched to Symdeko March 2018. Doing very well!

  5. #5
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    Apr 2015
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    I was never on Orkambi8 I haven't tried increasing it I do it twice a day But I will drink lots of water. My CF doc thinks I have a bad nasal drip dripping down the throat so Im goin to an ENT doc and see what happens meanwhile Im off symdeco right now

  6. #6
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    Apr 2015
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    My cf doc thinks its coming from my sinuses I have a terrible nasal trip So Im going to an ENT

  7. #7
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    Dec 2018
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    Symdeko

    My daughter experienced a strange feeling of "anxiety" and "mental spiraling" when she took Orkambi (we think it might have been the Ivacaftor component). The CF team allowed her to stop the medication at the time, and those issues went away entirely. That was two or three years ago.
    About 9 months ago, she began taking Symdeko. She was fine until about two months ago, when she experienced a "Prednisone-induced psychosis" that sent her to the hospital for 47 days. I'm wondering if the Ivacaftor component of Symdeko might have played a role? Has anyone else heard of or experienced reactions like this to Symdeko OR Prednisone?

  8. #8
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    Apr 2015
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    Its coming from my sinuses and the phlegm is accumulating in the back of my throat and I cant get the phlegm up and I cant stop coughing. I can breathe fin e from my lungs. Im going to a ent right now Im off symdeco

  9. #9
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    My daughter has asthma not Cf and she was put on prednisone and she had such a psychotic reaction that she had to be hospitalized. I feel for you and your daughter

  10. #10
    Super Moderator
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    Ds mostly has digestive and sinus issues, so his purge involved that. Have you tried sinus rinses? He does them when he gets colds.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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