Here is what I see as the good, the bad, and the ugly:
The Good
- Unique class of nebulized antibiotic for the CF population
- FDA approved (although I don't have much issue with my Colistin not being FDA approved for nebbing - we CFer's do things off label all the time... actually since my FEV1 is greater than 75% my use of Cayston is off label....)
- Used through the eFlow (you all know what a fan I have been of the eFlow... been using it since 2006)
- Pretty quick nebulzation time
The Bad
- Tastes a bit like TOBI - I haven't been on TOBI since about 2004 and I don't miss the taste. Oh well - not that big of a deal
- Stuff has to be refrigerated (but technically the PI says once the meds have been removed from the fridge, meds can remain at room temp for 28 days)
- Stuff has to be mixed (Just one extra step I'll have to do in my car during my mid-day dose.... more on that later)
The Ugly
- I nearly sliced my finger open trying to get the metal flap and metal ring off the cayston vial. WOW FDA and GILEAD - you thought this was safe?! Good grief
- 3x a day dose.... WOW. Yes, 4 hours apart is OK. Sure, I get that. But wow - for those of us who work (and even those who don't), this is a very difficult routine to get in to. I have put reminders in my iPhone and work Blackberry to doubly remind me mid-day to do my Cayston. Or else I'll forget. BLEH
Given this is my 1st dose, I might have more to add to the Good and the Bad, depending upon how the med makes me feel :) I"ll keep you posted.
Overall, I'm super happy that the CF Community has another option to treat PA!