I thought it would be fun to log my initial experiences on the drug, so here we go :)
Baseline: CF-wise, my baseline usually consists of a cough from 10:00 AM until around lunchtime. And my nose is usually at least partially stuffed up. On top of that, I have good days and bad days, which I think are triggered by allergies. On the bad days, I have night sweats and wheezing in the middle of the night, and then I wake up feeling tight and wheezy. And I feel tired and gunky all day - clearing my throat, coughing, and congested. Sometimes I also feel achey, and sometimes I have a sinus head ache.
Day 1 - This particular morning I woke up feeling good after a good night, so it was a sign that I was going to have a good day. The FedEx man showed up at 8:30 AM, and I immediately took my first pill with a scoop of peanut butter (you need to take fat with the medication). Then I headed to the gym.
I did start coughing up some gunk about an hour after my first pill, but that is normal for me at that time of the day. The rest of the day I felt good. I took my second pill with dinner, and again I had a little bit of a cough an hour after I took the pill.
Day 2 - I ended up having night sweats and a bit of wheezing in the middle of the night, and I woke up feeling tight and wheezy. I had my normal mid-morning cough, and I was tired enough to need a nap in the afternoon, (but Grace also woke me up in the middle of the night, so that was at least part of it). My nose was half stuffed-up most of the day. My stomach had little pains off and on.
Day 3 - More night sweats and a tight feelings in my chest. I immediately did an albuterol treatment when I woke up, and I notice it didn't help with the tight feeling right away, like it usually would. But, when I did my hypertonic saline 90 minutes later, (and an hour after taking Kalydeco), I noticed that the hypertonic saline was less irritating than it usually is. I still had my mid-morning cough.
I would say, overall, I haven't yet noticed Kalydeco having an affect, but it's hasn't even been 72 hours, so no big surprise. I am so excited to see how this goes!
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