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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)
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@heathert

@anniepie yes they always mention so many side effects for everything which is scary,makes me quite anxious. It must be difficult on your own, I feel for you. A medical alarm is a great idea, just to know you have support if you need it. These drs never really go into our situations or explain things much, not good, and of course we cannot get hold of them after 5pm,, Most people I know had very few (not bad) side effects, but pays to be careful. Are you going onto Arikayce when you get the alarm. Hugs Heather

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Replies to "@anniepie yes they always mention so many side effects for everything which is scary,makes me quite..."
anniepie | @anniepie | Mar 19, 2021

Thanks Heather @heathert, Yes I'm working up to it, when I've got the alarm.
Hugs from Annie

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anniepie | @anniepie | Apr 20, 2021

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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