So this last round of Cayston was such a crazy experience. I started it a little early as I was sick and on antibiotics and during the duration of one week I coughed out 5, yes 5 very large and old nasty plugs in 7 days! I even had a fever for a bit before coughing 2 of them out. It was like clockwork. Got a little fever, did my treatments, coughed a plug, fever disappeared. I know the antibiotics must have helped bring up the plugs, but I really wasn't that sick. I got a cold and lost my voice, slept all day, and was back at work the next day. After 27 years (13 knowing about my CF) I have come to learn that no cold of mine disappears without giving my lungs a visit so I immediately go on orals. So even though I was on orals I was still shocked that I pulled so many plugs when I don't feel like my lungs ever got too bad.
With that being said my Cayston run is over and I am nervous about stopping. I can't use Colistin or Tobi so I really only have Cayston to keep my bacteria at bay. My doctor mentioned staying on Cayston all the time when I started to show problems with Colistin, but we haven't discussed it further. Seeing how many plugs (not just this month although this month wins, but all months when I start Cayston) I am really considering going on it full time. I am not too worried about resistance because if I don't take care of my lungs now I won't live long enough to become resistant to any meds anyway. At this point, I am not resistant to any meds (one perk of late diagnosis) and figure with the upcoming inhaled Levequin and Cipro I will have several options in the future. Has anyone else ever been on the same med every month or heard of someone doing this? I am going to talk to my doc about it Monday and will let you now what he says. For now I miss my cayston :(
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