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@flib

My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone in some recent trials. Does anyone have information about nebulizing this drug? I have not been able to do the big three so it has been more than 10 years since I got MAC and just this year I am finally overwhelmed by it
Down to 88 lbs, lots of coughing and lots of fatigue. Let me know whatever you know about this drug. Greatly appreciated. Flib

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Replies to "My pulmonary doctor wants me to try this. Seems it can kill MAC bacteria as shone..."

@flib Amikacin is an injected antibiotic. It is now in a liposomal inhaled form called Arikayce for retractable MAC ( those who have not responded well to at least 6 months of the Big 3. It is combined with two of the Big3. In other words, you have to be able to tolerate at least two of the Big3. It is in the clinical trial phase 3 and should be covered by insurance. If not there is a help for that with a program they tell you about, and you apply for it. There is a training session on how to use the Lamira nebulizer and the monthly medication vials come via Fed Ex in a refrigerated cooler which is picked up the next day. You will have an Arikayce support team which you can contact regarding symptoms etc.. You are never alone in the journey. I believe you will be on it daily for a year. It takes me about 45 minutes start to finish as everything has to be cleaned and sterilized afterwards so you are ready for the next day. I hope that answers your question. The short form is Amikacin is the same as Arikayce only one is injected and the other inhaled and gets right into your lungs giving those bacteria a good death blow! irene5

Hi @flib, you'll notice that I moved your message to this recent and very informative discussion about amikacin. In addition to the information @irene5 provided, you can click VIEW & REPLY and scroll through the experiences shared by other members like @heathert @gaylewroc @suzyqueue @angiejohnson and more.

@flib, Hi there. It sounds like you are in dire need of something different for treatment. I would give the Arikayce a try. I am very worried about you. Sending you hugs.