tag:blogger.com,1999:blog-2848916293298934342.post8960667531700087293..comments2023-10-26T07:33:46.550-04:00Comments on 66 roses: And we're off CaystonErin Moorehttp://www.blogger.com/profile/08027766394549526193noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-2848916293298934342.post-60565492578586591882013-10-07T16:09:49.485-04:002013-10-07T16:09:49.485-04:00I do not have CF. I'm a 70 yr old woman with ...I do not have CF. I'm a 70 yr old woman with severe bronchiectasis. My pulmonologist specializes in adult-CF and that's been a blessing for me as most pulmonologists appear to only know COPD in former smokers.<br /><br />I was put on Cayston in late June. My doctor did this as I'm down to one oral antibiotic for pseudomonas infections and we don't want to use it too often. Amazingly, he manages to get my insurance to pay for Cayston!<br /><br />The first week, I thought it was really helping me. I felt better and my pulmonary function increased. Then I got a very bad case of thrush. I've had it in my mouth when on both antibiotics and prednisone before, but this was in my throat and esophagus. I was put on an oral anti-fungal. A few days later, my pulmonary function went down the tubes. I was also having bronchospasms, not when using the Cayston, but at other random times, especially at bedtime. My SATs dropped and dropped and dropped. I was on vacation for 21 or the 28 days I was on Cayston. When I finished my course, I felt great.<br /><br />Saw my doctor when I got home and he was thrilled at how my lungs sounded. I told him I was concerned that the Cayston made my SAT's drop and he thought it was something else. I started my 2nd round of Cayston the next day, and within 3 days, I couldn't breath. I hung in as I was hoping that my body would become accustomed to the meds, but often my SAT's were in the low 80's - one can barely function at that level.<br /><br />I finished the course and a week later saw my doctor. I told him I felt like the old joke, "the operation was a success but the patient died"! Clearly, the Cayston clears out my lungs and clears the infection, but the side effect of not being able to breath is a bit profound for a drug one is to take the rest of ones life.<br /><br />We decided to try a lower dose. I'm not taking it only twice daily (AM and PM which is easier anyway), and each time I take it, I use an insulin syringe to draw in 1/3 the regular dose in the bottle with saline added. I then put that in the nebulizer and throw out the rest (kills me to throw out such an expensive med!). <br /><br />The side effects are less than before, but they're there, in particular, the bronchospasm. My SATs were in the mid-90's when I was off the Cayston; now they're in the upper 80's, so I have lost function.<br /><br />Has anyone else experienced this? I will admit I'm the poster child for adverse reactions to drugs, but I had such hopes for this one and my health was deteriorating significantly. I'm an otherwise totally healthy woman in good shape (pulmonary rehab 3 times weekly).<br /><br />I'm terrified to try Tobi as hearing loss would be a death sentence for me - it would totally change my life for the worse. I've done IV antibiotics before and they really didn't help. Should I just tell them to open the grave? srbhttps://www.blogger.com/profile/02856563845261571825noreply@blogger.com