symdeco
- Thread starter mstein
- Start date
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.
stephen
Super Moderator
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
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
Joyous Mom
New member
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?
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?