@jr2366 Yes Jennifer- welcome! Gina is correct. Many of us are now on Arikayce. And welcome! I will start by saying you will glean lots of information and insight into this disease from the people on Mayo Connect. I actually have a question for you. Did your doctor say why he went straight to Arikayce? It is my understanding that Arikayce is used for retractable MAC which is MAC that hasn’t responded to other treatment, is worsening, and/or the patient can’t continue on all of the previous meds. Arikayce is also $133,000 a year - around $ 11,000 per month! I had to apply for assistance with that huge piece. And there is paperwork back and forth in order to be approved for the phase 3 clinical trial that Arikayce is now in. Many people on this site have MAC but symptoms don’t warrant treatment. What symptoms do you have? Do you have a pulmonologist and an ID doctor? Did you get a second opinion? How were you diagnosed? Did you get training from a nurse on the use of Arikayce? It is quite a process and the nebulizer etc all have to be washed in special soap and sterilized afterwords. I’m just realizing I have lots of questions for you. I guess Jennifer I am just surprised that you are on Arikayce and no other MAC meds. If you google Arikayce it will tell you all that info. The only difference is that now you only need to be successful with two of the three other meds. Wishing you all the best, but please do your due diligence about this disease, and make sure you have doctors who are on top of your situation. Ask how many patients with MAC they have treated. Good luck! irene5

Jump to this post