Results 1 to 3 of 3

Thread: Starting Symdeko

  1. #1
    Junior Member
    Join Date
    Jun 2018
    Posts
    2

    Lightbulb Starting Symdeko

    I made the decision this week to start Symdeko. I was avoiding it because of my Orkambi experience. I had severe panic attacks, gain 20lbs all in my torso, had my ankles swell up, had issues with my cycles, and was overall a stranger in my own body. Has anybody had a similarly poor experience on orkambi but a positive experience on symdeko?

  2. #2
    Junior Member
    Join Date
    Aug 2018
    Posts
    1
    Quote Originally Posted by amlorr94 View Post
    I made the decision this week to start Symdeko. I was avoiding it because of my Orkambi experience. I had severe panic attacks, gain 20lbs all in my torso, had my ankles swell up, had issues with my cycles, and was overall a stranger in my own body. Has anybody had a similarly poor experience on orkambi but a positive experience on symdeko?
    I was in both studies and can tell you that although I didnít have near the amplification or side effects, I did have an elevated blood pressure on Orkambi along elevated liver enzymes and CPK numbers that were came close to ending my study.

    Still, the positive effects outweighs the negative effects. However, I was also in the Symdeko study and had almost zero side effects. Iím one one person out of many in the studies but I had no complaints whatsoever on Symdeko and remain on it today.

  3. #3
    Super Moderator
    Join Date
    Apr 2006
    Posts
    20,866
    DS just switched from Orkambi to Symdeko this weekend. He'd been on Orkambi for three years and experienced phenomenal growth. So for he just seems to have a stuffy nose, though not sure if that's a side effect or our weather.
    Parent to a child wcf double delta f508

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •