So I was on a cycle of 28 days Cayston, 28 days Colistin every other month. Well last month, I started Colistin and instantly felt tight and irritated in my lungs. I decided to hold out a week to see if it improved. I noticed the symptoms were much worse immediately following inhaling Colistin and started to ease up as the day went on. I also noticed that if I skipped a dose the symptoms weren't as bad. So I went to the clinic and my CF doc took me off Colistin permanently.
My little lungs can be so annoying sometimes! They are so sensitive! I wish they would understand that these inhaled meds are HELPING them, but they always freak out and get inflamed. I am now permanently off Tobi and Colistin which means I now only have a month of Cayston and then a month of NO inhaled meds. This really freaks me out.
I just completed my first month without inhaled meds...I seem okay. I do feel like I started them in the nick of time because I can feel my energy level dropping slightly. My Doc said that I could potentially stay on Cayston every month, but he wanted to see how I do every other month first. I really hope that Cayston does not start bothering my lungs because I would be out options until the inhaled Cipro becomes approved.
I wonder if there is a way to desensitize your lungs when it comes to inhaled meds like there is for IVs. Hmm anyone ever heard of this?