Hi Heather @heathert. I do remember what a number of the serious side effects were for Arikayce that were more prevalent than when using the big 3 alone. But I'm not sure it's a good idea to repeat them here -- some people could then be too afraid to take Arikayce.
I guess it's like cancer treatment really. Some cancer chemotherapy can have dangerous side effects and risks, but it is a decision you end up making if you are trying to get rid of a bad cancer. It is the same for Arikayce.... there are some life-threatening dangers that could happen to a few people, but I have decided to take it if I can because nothing else has worked for me so far.
Anyway, the follow up study for Aricayce was only about whether it stopped the NTM or not. Unfortunately they only followed up for 3 months after finishing Arikayce treatment, They found that around 40% had their NTM "cured" for 3 months after finishing meds.
Other studies -- after any kind of treatment -- have shown that around half of all NTM cases reoccur again, usually within 12 months of apparently being "cured". So I don't think 3 months is a long enough time for a follow up study after finishing Arikayce,
Arikayce may or may not help for as many as 40% of cases if you looked at 12 months after finishing meds.