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Posts (50)

Tue, Oct 22 3:17pm · Starting Arikayce - nervous in MAC & Bronchiectasis

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?

Tue, Oct 22 3:13pm · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

Tue, Sep 3 3:00pm · Starting Arikayce - nervous in MAC & Bronchiectasis

To everyone: What do you all know about the effectiveness rate of Arikayce? I thought in the video it mentioned 30% conversion rate. However, my doctor told me 60%. Has anyone heard any updated information, or what understanding do you all have about the effectiveness rate? Thanks for your help.

Tue, Sep 3 2:52pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@angiejohnson…1). So, do you expect to be on Arikayce your whole life? I am 48. I've been on big 3 for a little over 2.5 years. I am hoping Arikayce is going to help me get rid of this. 2). Are you still taking the other two regimens from the Big 3 besides Rifampin? Thank you for your help.

Tue, Sep 3 8:31am · Starting Arikayce - nervous in MAC & Bronchiectasis

Thank you @rits for your detailed update. It sounds like you are doing well killing your bacteria…you must be SO happy!! Keep us posted. 🙂

Tue, Sep 3 8:22am · Starting Arikayce - nervous in MAC & Bronchiectasis

@angiejohnson Hi. I was wondering two things: 1). Have you lost your voice the whole time, or has it come back? 2). Has the Arikayce not worked yet to kill your bacteria? Is your doctor hopeful that it will. I was told in 3 months the infection could be gone…I don't know if this is overly hopeful. Thanks for your help if would reply back. And, I hope your infection goes away soon if it hasn't already!

Fri, Aug 23 5:52pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@heathert, did you have any side effects from being on the Big 3 for 3 years? Thanks!

Fri, Aug 23 2:59pm · Starting Arikayce - nervous in MAC & Bronchiectasis

To everyone…I have been on the Big 3 for a little over 2.5 years. Have any of you experienced any side effects to your body? I now have Hashimoto's Thyroid, tons of food sensitivities, and I have been experiencing some vibrations in my legs while sleeping. I am only 48 years old. I am curious what you all have experienced with the meds. Thank you!