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?
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Starting Symdeko
- Thread starter amlorr94
- Start date
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 didn’t 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. I’m one one person out of many in the studies but I had no complaints whatsoever on Symdeko and remain on it today.
For me, Orkambi made my breathing more debilitated and Symdeko didn't really have any tremendously significant benefits. But, there's a new drug that's supposed to be on the rise to add to either regimen that's supposed to significantly increase PFT's. Regardless, everyone's experience is different and what may work for some, won't work for everyone. To say the least, there's a lot of news trials and medications on the rise! So that's always good news!