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Thread: Switch From Kalydeco to Symdeko

  1. #11
    Senior Member
    Join Date
    Jan 2015
    Posts
    273
    I'm looking to switch from Orkambi to Symdeko at my next clinic appointment in May. Hoping for results like Stephen and Penny had.

    I've been on Orkambi for 2.5 years, and it has improved my lung function and significantly decreased the time it takes me to recover from colds/coughs and decreased my susceptibility to cold/flu in general. However, it cost me considerable exercise tolerance (tightness in chest and/or exercise induced asthma). Orkambi also has decreased my temperature tolerance, making winter cold and summer heat more fatiguing than in the past. I want to spend my life outside hiking, swimming, and running, can I get that from Symdeko?
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  2. #12
    Ethan, Symdeko has definitely helped with chest tightness for me, and I think it's helped with exercise tolerance as well. I switched from Orkambi about 2 months ago but also had a head start because I was on it last fall during a Vertex triple combo trial for a few months. My lungs are noticeably more open and I definitely think exercise has been easier.

  3. #13
    Senior Member
    Join Date
    Sep 2016
    Posts
    149
    Hey guys! Just wanted to update..I made the switch from Orkambi to Symdeko and I just completed my 6th day. I have to say I noticed I am getting up a lot more junk in a shorter period of time than I did on Orkambi. I feel like every time I cough I bring up more and more plugs than before, but despite all the coughing I've been doing my lungs feel great! I'm doing a PFT tomorrow and keeping my fingers crossed to see a little bit of improvement!

  4. #14
    Super Moderator
    Join Date
    Aug 2016
    Posts
    30
    I’ve been on Symdeko for about 6 weeks now. The marked improvement in my breathing, which I experienced during the first few days, has reminded constant.

    I seem to be experiencing some mild dizziness at times , which is listed as a possible side affect. Since I’m taveling in Israel, it’s a bit difficult to speak to my CF doctor and have her call me back. I did bring extra Kalydeco, so I could switch back to it, but I really don’t want to give up the breathing improvement.
    Last edited by stephen; 04-30-2018 at 01:50 AM.
    76 Y/O with CF (D1152H and G542X) and Broncheiectesis.
    FEV1 Low 40s%.
    Started Kalydeco March 2014, Switched to Symdeko March 2018 - and doing very well.

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