Should I take Big 3 + inhaled ARIKAYCE

It sounds like you should do the treatment before your lung damage gets worse
If you are otherwise young and healthy you are likely to do fine with the medication
If you get side effects they can usually be managed and there is a wealth of information and experience on this forum
Adding Arikayce at the start might shorten your overall treatment time-
I know it’s scary before you start the medication but it sounds necessary
Best of luck!

PS medications worked for me and no moreMAC for over two years

Thanks for your feedback - really appreciate it. I am so happy for you that the medication works on you. I would recommend you to do the airway clearance continuously to prevent MAC to come back.

What is your case pls ? How many medication you took? Did you use Arikayce ? Arikayce may cause over 10 percent people deaf and it is possibly permanent.

Thanks again for your valuable points! I will definitely think about it.

I changed my diet with more protein and vegetables esp avocado and gained about 5 lbs in the past three months ( BMI is 19.3 now - I was underweight in my whole life) though I have MAC progressing. That gives me the hope that I can improve my immunity system by excellent
nutrition and a healthy weight, not antibiotics.

Not sure whether I am correct.

You need to do it all
Diet, exercise, airway clearance all help but if your MAC is progressing meds are needed
I took big 3 then added clofazimine but did not finally get rid of it until Arikayce added, which cleared up the last of the infection in six weeks. Still faithful with my airway clearance
Re hearing loss if it’s a problem in 10% remember 90% are ok
Get a good baseline hearing test and a vision test too

Yes Diet, exercise and airway clearance, big three too! 🙂 Thanks a lot for your reminder.

How long did you take the medication? Did you experience all the vomit, diarrhea and weight loss? Can you share your experience with med? Do you also have cavity? Cavity is much harder to be cured by antibiotics than nodule type. That is why I don't have enough confidence in med. They usually don't give Arikayce at the beginning due to side effects. Maybe my disease have both nodule and cavity so my doctor wants to try everything possible to get rid of the cavity.

I am thinking about gaining another 20 lbs then start the med. I also take some supplement like NAC and glutthion, which are usually not detected enough in MAC patients.

Thanks a lot.

Had one cavity
Weight stable throughout and main side effect was loose bowels but not really diarrhea from azithromycin
I discovered at the end of treatment that taking a tablespoon of unmodified potato starch ( in yogurt) a few times per week helped- supposedly feeds good bacteria but I just found it binding!

Wow, you tolerate it really well! Is your cavity closed up at the end of treatment? How large was it?

Many people eat digestive enzyme and probiotics. But I like your organic way. 🙂

Take it from me, you do not want long term cavitation. Scar tissue could form and then it's permanent or surgery time. Start the antibiotics as your Dr has ordered. Arikayce will be the toughest but they can work with the dosage or stop it earlier than planned. And always do your ACTs

MAC may be hard to treat but the antibiotics and the inhaled Arikayce are key in keeping it at bay. I had a 10 cm cavity and the treatment combination shrunk it to 4 cm. I'd be more concerned about NOT doing any of the treatments.