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Starting Arikayce - nervous

MAC & Bronchiectasis | Last Active: May 7 9:56am | Replies (97)

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Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know what would happen if you stop the antibiotics all together and eat right and exercise? Do you think it can stay under control?

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Replies to "Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know..."

What are the results of your most recent sputum cultures and CT scans? Do you do any nebs or use a flutter device to keep your lungs clear? Have you talked to your pulmonologist or infectious disease doc? Everyone has a different experience with MAC and bronchiectasis.
In my case, even though the antibiotics (daily) have not eradicated the infection, I persist because the most recent CT shows still-growing pockets of infection and the cultures keep growing the bug. I don't ever want to feel as sick as I was when I started treatment in June 2018. We will be revisiting the issue after my next CT in December, considering cutting back to 3x/wk for 6-9 months if the scan looks better and my cultures are clean.
Other people here will have different stories for you. You will need to base your decision on your health, whether you still have actve MAC, other conditions you have - I recommend you talk with your doc before you make any changes.

@beatitnow, Hi Amy! I haven't heard from you in awhile. How are you doing? Did you start on the Arikayce? If so, how is that working out for you? Or did you decide to forego meds altogether? I hope you are doing ok!

I was on for 3 years, got stable and stopped the big 3. 6 months later some symptoms reappeared but after extensive testing, turned out to be aspergillus. Been treated for that for 2 years and counting