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I have been on “the big 3” antibiotics since 2014 for MAC and Bronchiectasis. I am still producing positive cultures. I have not chosen to take Arakayce so far. Mayo and my local pulmonologist have recommended it - but the side effects concern me. I was recently taken off rifampin due to continual low white count. I have been hospitalized in the past for Hemoptysis and been treated for pseudomonas several times - the last time was two weeks of Cefepime infusion.
I am 75 and good health otherwise. I use nebulized Levalbuterol and 7% saline as well as SmartVest occasionally.
I honestly don’t want to be dealing with a 15 month commitment to the Arakayce treatment and side effects that I don’t have now. My pulmonologist said: you need to do this sooner rather than later.
He just put me on a new inhaler called Stiolto Respima for relief of tightness in my chest and pain and burning in my lungs. Your comments are welcome. Thank you and Be Blessed.
Replies to "I have been on “the big 3” antibiotics since 2014 for MAC and Bronchiectasis. I am..."
@lampstone what side effects are you expecting from Arikayce? You have been a Connect member for a long time and must have knowledge of how effective it is. I had minimal obvious side effects, and was on it forever. I coughed some when I used it. It is time consuming is all. It is an effective MAC buster!:) At our age I consider all options . I was my doctor’s guinea pig as it was fairly new when she filled out all the paperwork for the clinical study. My ID doctor was pretty firm about my prognosis . Sounds like your doctor is encouraging you as well. Give it a try. What’s the worst thing that can happen? You have some side effects you don’t like. What’s the best thing? MAC will be gone. Think about it. Irene5
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Many people tolerate Arikayce well, others do not. If it does not work out you can always stop.
I was only able to last a daily treatment for 4 1/2 months and Dr took me off it. This was several years ago. Now they might try MWF, I wish I had that option available, I think I would have been OK. I was disappointed in Insmed support at the time since my Dr had not prescribed this before and Insmed referred all issues back to my Dr. Hopefully your Dr has experience with Arikayce in the past.