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Saturday, July 10, 2010

First dose of Cayston

Well, I'm happy to report that I'm in the middle of my very first dose of Cayston.

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!


  1. Excellent post. I was on the study for two years. I was told that AZLI lasts about 12 hours at room temp and doses should be no closer than 6 hours. That was on the study so the information may have changed. How confident are you with the information that it lasts that long out of the fridge and doses can be four hours apart? Do you have a good source you can share. Thanks.

    I agree with you about the bottle tops. Wait until you break off the tab and have to open it with a screwdriver. That's a blast.

  2. They there - thanks for your comment.

    My source for room temp for Cayston as well as 4 hours in between is the FDA Approved Prescribing Information.

    Every drug that is FDA approved has Prescribing Information (PI) that is reviewed down to every period and every word. Every statement made on the PI must have proof.

    So this is the ultimate source for information about a drug - and in this case, the Cayston PI states that it can be left at room temp for 28 days after it is taken out of the fridge, and doses can be as close together as every 4 hours.

    Let me know if you have any more questions.