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kathyhg (@kathyhg)

Water at freshwater lake

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

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@rits

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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Replies to "Thank's for asking, Sounder. The training went great but I was short of breath and I..."

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.

Rits. I had my first dose of Arikayce today. Nurse came and all went well. It seems I will be taking it every day unless I have a reaction. Were you able to go back on the Arikayce again after your breathing problems? I am hoping all goes well, but time will tell. I’ll keep you posted. I will take in the morning and then go to work right after.

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