Alyftrek side effects (17 days in)
Hey all, sharing this for the next person who frantically googles 'alyftrek side effects reddit' ha ha.
Just want to say that I took Orkambi, Symdecko, and then Trikafta. With Orkambi, my legs had a rash for one day. That was the only reaction I had to any of the modulators.
Switching to Alyftrek was more challenging--for the first week I felt WIRED yet exhausted, my right ear blocked up, and I felt so stupid in my head. My, uh, digestion hasn't been great. And I experienced some interesting changes to my libido (those were not bad though *clears throat*). The wiredness was bad, I couldn't concentrate enough to work for over a week. No changes to my breathing, sinuses, blood sugar (I'm pre-CFRD), anything else.
I'm happy to say that:
--I switched to taking Alyftrek at night so I could sleep through the wired/stupid. I take trazadone so I knew that would cover it so to speak. This worked.
--Wired/stupid is now completely gone.
--Digestion is still unpleasant, but pancreatic sufficiency has been my biggest challenge, so I expect this will take some time.
--I saw my amazing ENT about my ears. He said I had middle ear effusion and gave me some prednisone and okayed me doing the valsalva maneuver. It took a few days but it's almost completely cleared.
Important: if you're like me, and you're switching to Alyftrek because it's supposed to make you less anxious...at first you might feel more anxious. Push through as best you can, because I AM noticing less anxiety and that's been great. Sometimes I even feel a sense of wellbeing!
In full transparency I also take daily fetzima, adderall (for sleepiness only), trazadone, lamotrigine, and lorazepam as needed. I have abilify for when I take prednisone, because prednisone makes me hypomanic and I almost become catatonic when I take it. And yes even with all that I still felt hella anxious so I wanted to see if Alyftrek could help with it. So far it seems like a yes.
When my ENT was checking my ears he looked at my sinuses and I was astonished to see them EMPTY. They used to be full of green lozenge-looking things and now they are just empty hallways. What an incredible time to be alive. (We will never abandon the 10% however)