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Thread: Reduce Treatments with Symdeko?

  1. #1
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    Reduce Treatments with Symdeko?

    So for those of you who have been on Symdeko, Orkambi, or Kalydeco, have you been able to reduce any of your neb treatments? My 15yo son just started Symdeko in August. Thank you for any info!
    Mom to Luke, 16 years old
    Diagnosed with CF at age 5 - F508 2x
    Diagnosed with Crohn's disease at age 7
    My boy is special!

  2. #2
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    We did not. We continued to do the same number of vest and neb treatments each day. He still does albuterol/atrovent nebs, pulmozyme and tobi. Though there is discussion about stopping tobi depending upon cultures, which I was comfortable with and then prior to his starting symdeko, stopping orkambi he cultured a couple different bugs, one of which is sensitive to tobi. So we'll see next month.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  3. #3
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    Yes - I have significantly reduced treatments.

    When I started Kalydeco over four years ago, I was doing so well that I decided to try stopping everything else. My doctor said he had another patient that did the same thing but ended up returning to some of the treatments he had discontinued.

    After about 9 months I too resumed some of the treatments. I did not resume Pulmozyme or the Vest, and greatly reduced the use of Hypertonic Saline. Today I use Cayston, Advair, Hypertonic (about once a day), and Ventolin. I also use an Aerobika.

    Also, since March I'm using Symdeko. My CF center thought it might completely replace Kalydeco and were trying to switch most of their Kalydeco patients to it.
    76 Y/O with CF (D1152H and G542X) and Broncheiectesis.
    FEV1 Low 40s%.
    Started Kalydeco March 2014, Switched to Symdeko March 2018. Doing very well!

  4. #4
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    I have been on Symdeko since March, but have not reduced any of my treatments. However, I did notice that I do not have to really work very hard to cough stuff up during my vest/Aerobika any longer. Most mornings and evenings I'm pretty clear, so I end up putting the vest on, but there is no need to really do the coughing part because nothing is there. But I have continued to do all of my inhaled medications - albuterol, advair, pulmozyme, cayston, and colistin.
    37 w/CF
    DDF508
    Mom to 2 boys

  5. #5
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    Actually we have reduced some medications. DS' doctor retired about a year ago and we are now with a new CF clinic. DS was probably on more medications than the average person wcf because his primary doctor was an infectious disease specialist and VERY VERY proactive. I didn't really attribute it to his being on Orkambi, now symdeko, but based on blood test results they stopped Vitamin K, Actigal and supplemental Vitamin A. He still takes a CF multi-vitamin and additional Vitamin K. Recent appointment the removed a prophylactic antibiotic he'd been on since a toddler, which his previous doctor had him on. He still takes Azithromycin and Bactrim (due to steno maltophilia cultures that pop up from time to time). Another change was removing his atrovent neb. He still nebs albuterol, but they added Hypersal. They did mention reducing vest treatments from the 3 a day he does to two, but I'm not quite comfortable with that and unless there's a scheduling conflict after school, we don't have an issue with keeping that treatment as he's home anyway, playing video games with friends in his room.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  6. #6
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    Quote Originally Posted by Ratatosk View Post
    Actually we have reduced some medications. DS' doctor retired about a year ago and we are now with a new CF clinic. DS was probably on more medications than the average person wcf because his primary doctor was an infectious disease specialist and VERY VERY proactive. I didn't really attribute it to his being on Orkambi, now symdeko, but based on blood test results they stopped Vitamin K, Actigal and supplemental Vitamin A. He still takes a CF multi-vitamin and additional Vitamin K. Recent appointment the removed a prophylactic antibiotic he'd been on since a toddler, which his previous doctor had him on. He still takes Azithromycin and Bactrim (due to steno maltophilia cultures that pop up from time to time). Another change was removing his atrovent neb. He still nebs albuterol, but they added Hypersal. They did mention reducing vest treatments from the 3 a day he does to two, but I'm not quite comfortable with that and unless there's a scheduling conflict after school, we don't have an issue with keeping that treatment as he's home anyway, playing video games with friends in his room.
    So is your child on Pulmozyme or Tobi?
    Mom to Luke, 16 years old
    Diagnosed with CF at age 5 - F508 2x
    Diagnosed with Crohn's disease at age 7
    My boy is special!

  7. #7
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    He's on both. I kinda hoped they'd do away with the tobi, since he hasn't cultured pseudo for awhile, but in June he cultured a different but that was sensitive to it so.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

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