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kathyhg (@kathyhg)

Water at freshwater lake

MAC & Bronchiectasis | Last Active: Oct 8, 2019 | Replies (48)

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@sandykayhud

I started the Arikayce July 23. The training from the nurse and support from the pharmacy was great. I took it for 7 days. During that time I too coughed up the gunk after treatment and coughed more than I had before treatment. The third day i began with hoarseness and then completely lost my voice. My pulmonary dr wanted me to try to continue but after 7 days he decided I needed to stop. I have been off the Arikayce now for 4 days. Not coughing as much but still have no voice at all. As I understand it about half of the people in the trials had the voice problem so I was not surprised. Just hoping it is temporary. I do not think at this point thqt my Dr will put me back on it. He is trying to get me an appointment with a MAC specialist. I do feel that if I could have continued the treatment it would have helped. Just need to decide if I can live without talking….HA

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Replies to "I started the Arikayce July 23. The training from the nurse and support from the pharmacy..."

Sandykayhud. Thanks for sharing your experience. Does your doc think that you can try again or has he taken you off for good?

@sandykayhud Hi. Have you asked your dr about substituting the Arikayce with Colistin or Tobramycin?

I just started arikayce last week. My trainer recommended swallows of water a few times during the treatment. Also one of her patients uses throat coat and has found it to be a help as far as preventing raspy throat.

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