My question/concern has to do with the nebulization of Cayston. I've been taking Cayston for 18 months (every 3rd month, as I alternate with 2 other medications). For the last 18 months my doses have always lasted 2:30-2:45 minutes (well within the FDA guidelines). However, with this last 28-day supply, my nebulization time was reduced to 90 seconds, for no apparent reason. I haven't changed one thing that I'm doing. I've been working with Gilead, Cayston Access Program, Pari and CF Services in order to glean some reason as to why this drift in time has occurred, but no one seems to want to address my question (they will only say that I'm the first person to report the issue).
Next week my husband and I have a conference call with the director of medical affairs (Gilead), manager of operations (Gilead), manager of operations (Cayston Access Program) and a representative from Pari. I've already spoken with everyone on an individual basis, but we're going to come together as a group next week to continue this discussion; now in it's 5th week.
Is there anyone else experiencing a reduced nebulization time with Cayston. Thank you!
