Kalydeco and sinus problems

rosesixtyfive

New member
Does anyone know if Kalydeco will help improve sinus problems? Anyone have any experience with it? I have been reading that it will more than likely improve pancreatic function. What about sinus issues? rosesixtyfive, mother of Sam, 3 years old, ddf508
 

Aboveallislove

Super Moderator
Yes. Jenny who posts here can tell you about her daughter's great improvement. And another mom luckycfmom blog you can read about sinus issues going away so much so that her little one can now even smell stones! :). The way the med works it should work on all aspects of the body affected by cf but research hasn't really quantitifed all the improvements.
 

rosesixtyfive

New member
Thanks so much Aboveallislove. That was posted at 2:00 AM last night as I was worrying about random CF things. Jenny replies frequently to my posts and I just looked at luckycfmom's blog.
 

JENNYC

New member
Ok so Abby's main thing was her awful awful sinus'!! She was constant with sinus infection and sinus surgeries....it was never ending :( Since Kalydeco which we started in June of last year she has only had 1 sinus infection and no hospital stays or surgeries!! She had this I am so ashamed to say very irritating constant sniffle. For instance she would sniff 10-12 times in a row real fast and I was so close every time to saying Abby you gotta stop that....but I refrained because I knew she couldn't help it. Even blowing her nose didn't help. Within 3 days of starting Kaly the sniffle was magically gone!! And I mean GONE!! Now does she still get the sniffles from time to time...absolutely!! They are just not as bad and don't require antibiotics to clear them up. The cold fronts last year got us every time! The whole house would go down about once a week with the allergens the cold fronts were rolling in....but she did so much better!! There is so much hope now!! Hang in there mom, you are amazing and your posts show how much you care about your little one and staying on top of things!! Love our CF family!!! If you ever have any questions feel free to ask any time.
 

LittleLab4CF

Super Moderator
This is great news. I follow what people are saying about the effects and possible side effects of this fantastic drug. Something that tickled me was your remark about her sniffling. There are people, not CFers but with allergies and such that have no idea that they sound like a goose with a big fish in its cropp. Yes we can't help ourselves with some things but if I wasn't kept in line with my manners..... I had this great big guy working for me years back. He had huge hands and a tiny nose that was always in need of picking. And he was my customer service engineer!!! It was a lost cause. He had been with finger in nose for forty years before I got him and this old dog just couldn't break the habit.

LL
 
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