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New MAC treatment options??

MAC & Bronchiectasis | Last Active: May 5 1:29pm | Replies (19)

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Profile picture for Sue, Volunteer Mentor @sueinmn

I was on antibiotics for over 18 months, switching from 3x week to daily at 1 year to daily. Arikayce was not an option back then. At 18 months my CT was better but I was sick, depressed and still losing weight- underrated 100 lbs - but still MAC positive. With my 3 docs I decided to stop antibiotics and rely on 7% saline and airway clearance to try to heal.
A year later my CT scan had improved a little and 2 of 3 cultures were negative for MAC. I was regaining energy and weight and felt like I was getting my life back.
In the 4 years since then I have gotten my asthma under control, had minimal exacerbation, and my BE is stable.
Now, since December, we are trialing no nebs, just airway clearance except if I feel I need extra help. Today I did a half vial of saline and managed to cough up extra mucus. I will continue this until tree pollen season is over.
Every one is different, and I have made these adjustments with the help of my pulmonologist.

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Replies to "I was on antibiotics for over 18 months, switching from 3x week to daily at 1..."

@sueinmn
Hello Sue, I hope you're still doing well and enjoying another beautiful Spring.
I was diagnosed with MAC in January of the current year with a co-diagnosis of Bronchiectasis after having been treated for pneumonia over the course of the previous 6 months. I've been on the Etibi, Rofact and Azithromycin regimen for 3 months and many days feel as though I'm getting weaker.
My question is: Is it a helpful to nebulize at the same time as taking these meds? I'm not confident how helpful my doctors (GP, Infec Disease, and Pulm) will be if I ask them.
Many thanks
Susan C.