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Aug 26, 2019 · In shock after MAC diagnosis in MAC & Bronchiectasis

Sorry to take so long in replying. I taught kindergarten for several years. Then I owned and managed a Christian bookstore for 20+ years. I feel like I may have come in contact with my MAC through our hot tub that we used for several years.

Aug 8, 2019 · Water at freshwater lake in MAC & Bronchiectasis

just an update:After 12 days I am getting my voice back!! Dr still does not want me to restart at this point.

Aug 7, 2019 · Water at freshwater lake in MAC & Bronchiectasis

Exactly what is throat coat tea? No familiar with it.

Aug 6, 2019 · Water at freshwater lake in MAC & Bronchiectasis

Marilyn, mine started with the hoarseness. My dr wanted to continue so I did. I lost my voice and After 11 days I am just beginning to be able to squeak a little. Probably a good idea for you to it a rest for a day or so to see if your hoarseness goes away. Good luck!

Aug 5, 2019 · Water at freshwater lake in MAC & Bronchiectasis

I did talk to the Kroger Pharmacy (that is where my Arikayce came from) when I first lost my voice. They did not offer much advice and really said they had rather talk to my pulmonary dr if he wanted to call. Basically they just gave me the same thing that was listed as the side effects in the materials they sent me. I do not know if my dr talked to them. He just said to stop the Arikayce. Today he is putting me on prednisone and diflucan to see if that will help with the voice. Still waiting to try to get in with MAC specialist in Birmingham. Lord is teaching me patience and I am not a real good learner..HA

Aug 4, 2019 · Water at freshwater lake in MAC & Bronchiectasis

Thanks for the encouraging reply. My pulmonary dr has taken me off Arikayce at this point. My voice has been completely gone now for 10 days so he has no plans to put me back on at this point. He says to give it time so I am trying to patiently wait to see what it does. I am not able to speak and can only barely whisper. He is also trying to get me into a MAC specialist at Birmingham Ala. Maybe he has more answers.

Aug 2, 2019 · Water at freshwater lake in MAC & Bronchiectasis

At this point I am just waiting to try and get voice back. It has been completely gone for over a week. My pulmonary dr is trying to get me in at UAB with dr that specializes in MAC so will probably not start anything till I see him. Have you had anyone who tried the Arkayce and lost their voice who did not get it back? Getting sorta concerned. My husband may enjoy the peace and quiet but even he is getting ready for some noise from me!

Aug 1, 2019 · Water at freshwater lake in MAC & Bronchiectasis

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