About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (48)

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!

Fri, Aug 23 2:56pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@rits, how is your Amakicin going so far? How long have you been on it? Has your MAC/MAI cleared? Did you have side effects? I am going to be starting soon also. Thank you!

Fri, Aug 23 2:54pm · Starting Arikayce - nervous in MAC & Bronchiectasis

@hydrang3a, how long do you expect be using the Arikayce? Did yours clear, but you are waiting the year after the first negative sputum sample? If yours cleared, how long did it take? Thanks for your help. I am going to be starting the process soon.