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← Return to New MAC treatment options??
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MAC & Bronchiectasis | Last Active: 5 days ago | Replies (9)
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Just curious Sue. Did you mean you were only on the BIG 3 antibiotics for 6 months after MAC was cleared? I have been on the treatment for 3 months now, plus Arikayce. I started out with no side effects but in the last 4 weeks have been having almost daily , terrible headaches, some migraines which are debilitating to me. While I have had a history of occasional migraines, nothing like this. Has anyone had chronic bad headaches while on the antibiotics?
Replies to "Just curious Sue. Did you mean you were only on the BIG 3 antibiotics for 6..."
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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.