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Diagnosed with pseudomonas aeruginosa infection in my lungs
MAC & Bronchiectasis | Last Active: Jun 27 9:33pm | Replies (85)Comment receiving replies
Hello Irene, Cayston is currently approved for Cystic Fibrosis patients, and classified as a specialty drug. There were clinical trials using Cayston in patients with bronchiectasis, but I think they were inconclusive as to whether the results were good enough to justify the side effects. So as of now, it would probably be managed by doctors and insurance as an "off label use" for those who standard treatments did not help.
Here is a report of one trial that reports the type and frequency of side effects. A list of the abbreviations is at the end of the article so you can figure out what it all means. Sorry I couldn't find a report in layman's language that we could all understand more easily!
cayston-use-in-bronchiectasis-not-related-to-cystic-fibrosis-ncfb-.pdf
Has a doctor suggested you try Cayston? Maybe you will be the first in this group and can share your experience with us!
Sue
Replies to "Hello Irene, Cayston is currently approved for Cystic Fibrosis patients, and classified as a specialty drug...."
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Thank you Sue, Yes i know it is not approved for NCFB. But i wondered if anyone with Pseudomonas (NCFB) had tried it and what was their experience. Probably no one will report trying it since it is so expensive (hugely expensive) and Medicare probably will not approve it for NCFB. My Dr said 50% of the time they will approve it. I currently do not have part D anyway so i would have to pay out of pocket. It would be a big gamble. I tried Toby but had to stop it after just 5 doses.