Mac lung disease and the big three

Good day...I'm so sorry to hear that you are having such a terrible time with the Big Three antibiotics. I have been diagnosed with MAC for the second time and started the Antibiotics and they sapped all of my energy. I couldn't even function and was sleeping all the time and had ZERO energy. We are monitoring nodules for 3 months to see what happens. Talk to your doctor about alternative antibiotics. Thinking of you.

I was completely unable to tolerate the big 3. I was bedridden for over a week then had to stop taking them completely. I went to NJH but after consults with Dr Daley and Dr Eddy, I can only nebulize. I cannot tolerate Arycayce either.

I too am off of the Big 3 (second time) and feel better than I have in months. However, that's not to say they aren't, in some way, in my future once again unless I decide to let "nature take its course" without them. Most people tolerate the meds pretty well but some of us are unable to do so.

My last meds prescribed in March were the Azithro and Etham without the Rifampin, separated, initially, by 1 week. Three days into the Azith by itself caused me to have severe phantosmia and disguesia (smelling and tasting completely out of whack). I will be meeting with my ID doctor shortly after a CT scan and other testing, and I'm not sure what treatment will be determined at that time. I use the Aerobika alone at the advice of my ID doctor. Just know you are not alone. I hope you feel better soon.

Thank you so much for your responses. I was feeling so alone and so badly. I will be here for anyone who needs comfort and some encouraging words. Let's take it "One day at a time".
Katie ☺️

Sorry to hear . I just started may 20. Just getting use to the meds now . It as been trying to higher my blood pressure , I've been on blood pressure meds for over 5 yrs. Did the meds get worse for you ?

I started the big 3 a little over a month ago and handling the meds well but the phlegm and cough has gotten much worse. Anybody else ??

Yes, the same story with me. Cough and mucus has progressively worsened, despite the antibiotics. Basically it's daylong, and overnight too. Besides nebulizing saline and albuterol and using an Aerobika, my pulmonologist suggested I add a cough assist machine for additional airway clearance. Will report back if there are obvious benefits. Good luck.

My pulmonologist gave me nothing to help clear my airway. Wheezing pretty good at times. Guess I have to push him to give me something to help. I do workout which helps move the phlegm up.,,