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@anniepie

Hi Heather, Irene and Jennifer (@heathert @irene5 @jr2366) I need to ask a question or two about Arikayce, please.

Q. 1: I have been taking inhaled Arikayce for a few days now. Did you have more shortness of breath or difficulty breathing in the first week? (If so, did it go away or settle down after a few weeks? I have needed to use my Ventolin Asthma puffer much more often during the day and night since I started the Arikayce.

Q.2: Also, when you boil the aerosol head parts in a pot after each use, how do you get the parts out of the boiling water so they can dry on clean towel? How do you do this without re-contaminating the aerosol parts? It's a dumb question, I know.
I carefully drain the boiled water off and use surgical gloves. Is that okay?

Thanks so much for all your help. I hope everything is going okay for you.
Hugs from Annie

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Replies to "Hi Heather, Irene and Jennifer (@heathert @irene5 @jr2366) I need to ask a question or two..."

Annie when you take the equipment out of the distilled boiling water use a slotted spoon and transfer each piece to the base mat the company sent. You don’t have to have them sit exactly on each picture of the part. After transferring all the pieces cover all with the gray towel they sent. Once a week wash both the mat and the towel on gentle with a couple of drops of seventh generation soap that was recommended. I hang to dry on a towel rack. When you do the five minute thing prior to boiling use a couple of drops for the washing part. I know you didn’t ask that, but you can’t use regular dish soap and the water for boiling has to be distilled. Use your inhaler prior to using the Arikayce. See if that makes a difference. If the breathing difficulties continue ask your doctor. I found after a couple of weeks of use that calmed down. Hugs. Irene

@anniepie No I diddnt get any shortness of breath or difficulty breathing on Arikayce, hopefully the ventolin is working well for you.
I do not boil my aerosol heads, instead I use a sterilizer so they are not too hot and not in the boiling water, I put them onto a paper towel after to dry. It is very difficult to keep them sterile I feel, my dr said if she put a plate down on a table,M AC would be on it in no time. Maby put them in a open snaplock bag to dry, still not fullproof but ok.

Annie I have a question for you, did you get your Arikayce in Australia and was it subsidized by the govt, or did you get it from overseas, I need some as the big 3 is not working and last time when I was on the trial Arikayce worked for me, I did not want to go off it.
Take care Heather