Kalydeco - what's different once you are on it?

4hats

New member
I have a question for those of you on Kalydeco. Since you have been taking it, what has changed in terms of your daily airway clearance therapies? Are you still doing them a couple of times daily or have you been able to reduce them? What else has changed in your day-to-day care of your cf as a result of kalydeco? Thanks for the insight.
 

Ratatosk

Administrator
Staff member
A friend of mine's daughter is on it -- I believe she's 8 years old. They continue to do the same amount of airway clearance. They've noticed she isn't as "salty", she doesn't get as overheated, she has grown -- height and weight and has more of an appetite. They're an active family -- lots of outdoor activities and they've noticed she's not as winded, has more energy.
 
S

stephen

Guest
I could be a “poster boy” for Kalydeco!

I started Kalydeco 5+ months ago. Changes began less than a day after starting it. Now it’s almost like I don’t have CF anymore, thank G-d!


  • No more cough after 60+ years.
  • No more bringing up green mucus - or any mucus.
  • Significantly improved FEV 1 - from 38% to around 50% (as of 2 months ago).
  • Able to do more before getting out of breath.
  • Improvements are visible in CT scan.
  • Eliminated and/or reduced use of drugs.
  • Reduced nebulizing.
  • Gained weight - which I’m not particularly happy with.

I’m extremely fortunate to have made it this long, and to be able to benefit from Kalydeco to the extent I have. Unfortunately in the past, very few with CF made it into their 70s. G-d willing, this is changing.

(Note: I never have had any noticeable digestive issues, and still do have some sinus congestion.)
 

CFParent2

New member
Nothing of u have d508

True but vertex has had early success combining Kalydeco with other drugs. My simple understanding, is that Kalydeco only helps those that have partially functioning cells. It corrects the cell function at the end of the the process. Other drugs are showing signs help with the process at earlier stages.

Great to hear about those who have tried Kalydeco. Hopefully those people are not still in a study and sworn to secrecy. Seems like we(outside the studies) are always kept in the dark and only hear filtered purely academic results. I understand that results can vary, but I think that hearing about others having success gives hope that something will come along for everyone.
 
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