I hear today that Orkambi has been given the go-ahead to be used on the NHS at a more reasonable cost than originally. Is there a chance that this drug could help those with Non-CF Bronchiectasis? That would be interesting to know.
Orkambi - suitability for Non-CF Bron... - Lung Conditions C...
Orkambi - suitability for Non-CF Bronchiectasis?
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Sorry but it only works for CF which has the lumacaftor and ivacaftor.
Here from the Orkambi website:
Sorry Claudine, I agree with 2greys. Unfortunately not all cf patients are suitable because they have to have a particular gene.
I wondered that Claudine. But I've known CF patients who didn't have Bronchiectasis. By I'm sure it would prevent CF patients from developing Bronch. I'm sure someone will know.
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It's very technical judging from 2greys' reply. We do have some similar symptoms to CF patients but obviously the cause and solution is not the same. I remember a GP commenting once that Bronchiectasis is rather an anti-social condition. I feel that very much and also this time of the year we are forced to be rather isolated.
If I had taken that nonsence fron a GP I would have had no life! I have lived a very full life since I was diagnosed at the age of 3. I am 69 now and I would be furious to be described as anti social. It’s all a matter of proper management. Medical and personal.
HiClaudine
This time year I feel really isolated! The weather really effects my lungs so much!! Mine get really tight. Also have trouble exhaling! Even thou I exercise doesn’t matter!! So darn frustrating!
Kristy
Claudine
I would be very interested to hear whether it can be useful for other uses and a wider audience now if the drug can be extended for others through the NHS prescription service
to treat other diseases/ailments?
IKeith