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View Full Version : Kalydeco & low lung function.



chezza
03-21-2012, 07:33 PM
Hi I am fromthe uk and as yet we do not have this wonder drug, my lung function varies from 25% to 30% depending on weather it is my Cayston month on.
My doctor can not tell me if people with low lunction like mine will be offered Kalydeco or if it will just be offered to well cfs.
I have been following all your stories regarding this drug with interest and I am pleased that you have had good responses to the drug. Any info appreciated.
Thanks
:-)

chezza
03-21-2012, 07:33 PM
Hi I am fromthe uk and as yet we do not have this wonder drug, my lung function varies from 25% to 30% depending on weather it is my Cayston month on.
My doctor can not tell me if people with low lunction like mine will be offered Kalydeco or if it will just be offered to well cfs.
I have been following all your stories regarding this drug with interest and I am pleased that you have had good responses to the drug. Any info appreciated.
Thanks
:-)

LouLou
03-23-2012, 01:38 AM
I have never heard of any FEV1 restrictions with Kalydeco and consider myself well informed on the medication. Good luck!

LouLou
03-23-2012, 01:38 AM
I have never heard of any FEV1 restrictions with Kalydeco and consider myself well informed on the medication. Good luck!

CFcarebear
03-28-2012, 01:23 AM
My husband started it at the beginning of February with an FEV1 of 29%. Good luck!

CFcarebear
03-28-2012, 01:23 AM
My husband started it at the beginning of February with an FEV1 of 29%. Good luck!

chezza
03-28-2012, 07:24 PM
Thank youLauren & Emilyfor your valued replies, I wish our NHS system would hurry up & pass this drug for us to use. So fustrating when you know how much it has been helping other people.
Emily, how has you husband been on the drug, hopefully he is improving daily.
So wish we had taken the plunge and relocated from the uk to florida when we visited orlando for the first time 20 or so years ago on vacation, I would have been on the drug now (and have a much bigger wardrobe with all the clothes shopping I would have done) and saved thousands of poundson the manyvacations we have had to orlando and other parts of america.
Thanks again ladies.
:-)

chezza
03-28-2012, 07:24 PM
Thank youLauren & Emilyfor your valued replies, I wish our NHS system would hurry up & pass this drug for us to use. So fustrating when you know how much it has been helping other people.
Emily, how has you husband been on the drug, hopefully he is improving daily.
So wish we had taken the plunge and relocated from the uk to florida when we visited orlando for the first time 20 or so years ago on vacation, I would have been on the drug now (and have a much bigger wardrobe with all the clothes shopping I would have done) and saved thousands of poundson the manyvacations we have had to orlando and other parts of america.
Thanks again ladies.
:-)