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Typical length on Azithromycin and Ethambutol before negative culture

MAC & Bronchiectasis | Last Active: Jun 27, 2023 | Replies (9)
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@dulwich

I was on medication for about nine months before being culture negative for four months. Then I had several positive cultures and added Arikayce. Was permanently culture negative within another two months. That was with daily treatment from the start. So yes, sputum cultures can take a while to go negative and can also vary as they are random samplings of what is in your lungs
Also in my case, I never had any symptoms from the MAC and was definitely more fatigued with treatment
You shouldn’t be afraid of the Arikayce as it can work so well but if your lungs are already sensitive you might want to start less frequently and build up as tolerated
I started daily and had to stop after a couple of weeks and then build up the dose gradually once the hoarseness and cough improved but then was mostly fine

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Replies to "I was on medication for about nine months before being culture negative for four months. Then..."
formergardener | @formergardener | Jun 25, 2023

@dulwich, thank you for the helpful information. I guess it makes sense that different sputum samples at different times will have varying ants of bacteria present.

I read that Arikayce is approved only after 6 months of treatment with other meds have not resulted in negative cultures. Is there a reason why your doctors waited a few more months before adding it?

Also, were you on 3 meds or 2 during your initial treatment, and were you taking them daily or 3 times weekly? Did your doctor ever tell you why you experienced more fatigue when on the medications? Did they affect your blood counts? I have read from others who successfully completed treatment that their energy returned once they stopped the meds.

I have read that, besides the hoarseness and sore throat, that negative side effects from the nebulized Arikayce were less than other forms of the drug. Did you find this to be the case?

So, once you have a negative culture, I read that they want 12 months of negative before stopping meds. When you have a positive culture, does the count towards 12 months clear begin again?

So many questions. I really appreciate you sharing your experience.

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