Hi Newbie,

I was diagnosed with MAC and bronchiectasis in 2012. I’ve stayed relatively well until I enlisted on Encore/Insmed trial in Sept 23. The trial lasted 1 year and consisted of lipo amakacyn, clarithromycin and ethambutol. My hearing and eyesight was checked during trial and although hearing in left ear appeared to diminish, it was hard to attribute this to the meds. I knew I might be ‘placebo’ instead of amakaycin BUT didn’t realise until my hospital admission this week that if you don’t do at least 3 drug regime, there is a huge risk of developing antibiotic resistance. My clinicians really want me to start amakaycin/azithromycin/ethambutol/rifampacin but I’ve refused, for now, because of the fact that, as pointed out by lung consultant, only having 2 of the antibiotics could render me antibiotic resistant!! I don’t want to take ethambutol or rifampicin!! I’m 69 and only went downhill (in spread of Mac disease) AFTER trial finished. I’m angry, to be honest, because NO ONE outlined to me the risk of antibiotic resistance (if I was a placebo patient rather than a patient who was actually given amakacin)! I’m furious as this enlightenment about minimum drug regime has, potentially, given me a DEATH sentence! I’ve loved my life. I’ve kept as fit as I could. However, since end of trial in Sept 2024, my MAC disease has rapidly progressed. I’ve got a wonderful partner and loving family and friends BUT the Encore trial of amakacin has SEVERELY jeopardised my health! They know it….. and now I know it! Insmed never even wanted to purchase a small fridge for me to help with storage of amakacin. They’re only interested in PROFIT! Please think carefully about any trial…… you won’t always know the truth until it’s too late. 😢