Water at freshwater lake

Thank's for asking, Sounder. The training went great but I was short of breath and I had lots of gunk to cough up after each treatment.
I was doing it in the afternoon and by bedtime I was ok – until the fifth treatment which was on Saturday. I couldn't get my breathing to settle down and couldn"t stop coughing up gunk. Sunday, I realized I was having an exacerbation of my chronic bronchitis or bronchiectasis or both.
My breathing was so bad that I could barely make it to the kitchen and I stopped Arikayce as well as my airway clearance treatments. I sent a note to my doctor and she called me. She told me to hold off on the Arikayce and to concentrate on getting my breathing back to what is normal for me. Then, we would decide what to do. Maybe Arikayce 3
per week or maybe something else. Ten says later, I'm just about back to where
I was and I plan to send s note to the doctor tomorrow. I have an appointment for another ctscan and with her on 8/14. She may want me to wait to see her before
trying it again.

I am tremendously disappointed!

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Rits. Sorry to hear you are having some setbacks. I got a call from the specialty pharmacist tonite and he explained all the irritation side effects to me, which sound like what you experienced. He also talked about what he called “pulse therapy”. That is a certain time on and an equal time off. Like 2 weeks on and then 2 weeks off. My doc had talked about this to me as well. I will be beginning my Arikayce treatment the 1st week of September, since my family is coming out from California to visit me ‘til the end of August. Let me know how it goes after you see your doc. I am currently coughing up blood tinged mucus. But I do not cough uncontrollably or frequently. Just maybe 4 or 5 episodes a day. Especially right after getting up in the morning. The pharmacist also suggested that I get a baseline kidney and hearing function test before beginning Arikayce treatments I’ll keep you posted as things progress. Good luck and my prayers are with you that you are able to find a way for treatment to work.

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I'm glad the money came through and hope you have no issues with the treatment and it works for you. Enjoy your fun with family! Rita

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I'm glad the money came through and hope you have no issues with the treatment and it works for you. Enjoy your fun with family! Rita

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

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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!

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