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Profile picture for irenea8 @irenea8

Wow to 1997. You did not mention Bronchiectasis but assume you have it! Wow to your age and weight and yet your exercise routine. I can only manage 20 minutes on a flat treadmill and I am 75 and weigh 99. Did you just do the IV Ceftazadine one time and have improvement that lasted? Often we hear that Pseudo only really improves after using inhaled Toby. But many people do not tolerate it so you are very fortunate indeed and your improvement is wonderful. I also have colonized Pseudomonas but mine is chronic infection. I also cough up what you describe at around 4 plus ounces a day. I tried the Toby inhaled but only managed to use 5 times (literally meaning 2.5 days). For me it decreased urine output so I stopped. It can in rare cases damage your kidneys. I also lost my voice totally but could have lived with that. If you keep using it eventually you could develop resistance. Some Drs. will rotate it with Cayston to prevent the resistance. But Cayston is usually approved only for CF patients. If your Dr goes to bat it might get approved. Otherwise it is prohibitively expensive. There is also Colistin inhalation as an alternative. But not sure what coverage that requires. The nice thing about Toby is that part B medicare covers it! Anyway I hear of some people using it for years and not developing resistance yet.

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Replies to "Wow to 1997. You did not mention Bronchiectasis but assume you have it! Wow to your..."

@irenea8
Thank you for commenting, Irene. Yes, the bronchiectasis has been evident all these years, although in the early years the focus was on MAC. I’m not sure when I first heard the term bronchiectasis.
After the Levaquin quit having any effect I just upped my activity and increased efforts to clear the junk out of the lungs. I finally agreed to Ceftazadine in summer 2023. I saw great improvement, but not as impressive or lasting as I’m getting with Tobra. Ceftaz. is every 8 hours for 3 weeks…. Requiring an IV line with all the associated hassle (and I can’t swim with an IV). Repeated the Ceftaz summer ‘24 and in May and Oct ‘25. I spend winters in clean, dry air in southern AZ, hiking in the desert, summers in humidity in Minneapolis. And a pulmonologist in each place, an infectious Disease doc in MN. It’s complicated!
I’m hoping I can continue to tolerate the Tobra, and forge ahead with my use-it-or-lose it approach. I’m not planning to live to 90, but want to stay active til close to the end.