Sunday, June 16, 2013

2 weeks of Kalydeco

I’ve been on Kalydeco for 2 weeks now. I was told to give it 2 weeks – 1 month to really judge if it’s making a difference or not. My verdict… Yes, Kalydeco has made a huge difference in my symptoms. I can’t yet give an answer if it is clinically helping me but symptomatically it has improved my life a lot. I never thought I’d be writing a post on all my mucus changes, but in the hopes of helping someone with my mutations or other similar mutations know what they could expect from Kalydeco here goes…

 The past two days my cough has lessened again and it’s become even less productive. I have one “normal person” cough in the morning, just one singular cough, and spit up a small amount of mucus. But that is compared to waking up and having a mild – moderate coughing session for about 5 minutes coughing up thick mucus that collected in my lungs over night.

The past two days while I’ve done my nebs & vest I have not coughed up anything. I try. I still huff and cough and spit but no mucus. Ok, maybe in total I’ll see a dime size amount of pale yellow mixed in with my saliva.

During the day I’ve become much more conscious when I cough. When I do, most of the time it’s this dry cough that irritates my throat. Maybe asthma, maybe allergies, maybe both. But it’s different than my CF cough. It's strange to cough in the car and not need to reach for the box of tissues or put the baby down to sleep and not have to repeat in my mind "don't cough, don't cough" as I sneek out of her room.

I still find I’m having issues with my sinuses. I’m not blowing my nose constantly like I was when I fist started and I’m still doing a nasal wash twice but I’m noticing the mucus I’m clearing from my sinuses is sometimes green. Green = infection as far as I know. I haven’t had any sinus pain or pressure and I haven’t had any major issues with my sinuses since my surgery debacle about 8 years ago. I don’t know if just clearing stuff that was sitting up there for years? I’m going to try to do my TOBI with a mask for the next month and keep up with the sinus rinses and see what happens.  

I should be having a clinic visit around the 6 weeks mark but I’ve thought about buying one of those inexpensive FEV1 meters just so I can see if there are any changes between now and then. I should have done it before I started but I didn’t think of it. I’m curious to know if anyone else has one and if they blow similar scores as they do at clinic.


  1. I'm so glad you are noticing a change since you and I both have a residual CF gene mutation. I know this pill will work on us. In fact, I knew that over a year ago.

    I love how you talked about reaching for something to spit the mucus in the car. I do that in my car. Welcome to my kleenex car. Great post Karen :)

  2. I'm having the same crap come outta my nose, too! Except I'm not on K, haha. My first thought was also "ah, crap, sinus infection," but there's been no pain for me either, which is so weird! Maybe we just have dramatic

  3. Great news Karen, it's exciting to hear about people improving with Kalydeco who don't have G551D.

    I use a small device called the pico1 to monitor my lung function, only cost $30 delivered from the UK, you might have more options in the US too.


  4. Great news Karen! I'm so encouraged. I can't wait for next week to start my 8weeks of Kalydeco.

  5. I'm on your same shoes. my mutation is 2789+5G->A