Mac question: Arikayce Inhaler Antibiotic

I think most of us have bronchiectasis - it has been 3 years since my diagnosis, and I had it MAC for at least 3 years before that, so I assume I have had both at least 6 years or more. Here is the GOOD news - with regular airway clearance & daily exercise, my bronchiectasis has not progressed and my lung capacity has actually improved in the past 3 years. There is still MAC in my sputum, but not evidence of active infection.
Sue

That’s awesome to hear good for you

@sueinmn, Sue, I have to agree wholeheartedly....It's been almost five years since my diagnosis and I have had no progression with daily exercise, nebulizing 7% saline solution and airway clearance. I haven't had a sputum test in awhile but I don't think I have an active infection either because I feel great (except for some inflammation that's always there). Nan

I like hearing these good news posts ! Makes me realize its not all gloomy, thanks ladies for the pick me up

Thank you Sueinmn and everyone else. I have Bronchiectasis and MAC . My Dr has me on a nebulizer and two solutions. Budesonide .5 and Sodium chloride 3%. And I use aerobika. I do the the nebulizers 2 times a day. I get up in the morning and take a brisk one hr walk. Then I do an hr of yoga. The yoga releases mucus. I need to gain weight so mostly a vegetarian, I have added fish to my diet. Im into my second month of this routine and it seems to work. You have inspired me to keep going

i TOOK THIS DRUG FOR ABOUT 6 DAYS AND HAD AN ALLERGIC REACTION.....BE CAREFUL YOU ARE NOT HAVING A REACTION ALSO....IT SOUNDS TO ME THAT YOU ARE HAVING SERIOUS ISSUES TAKING THIS. MY DOCTOR TOLD ME SHOULD I HAVE QUESTIONS CONTACT THE PEOPLE THAT ARE LISTED ON THE INFORMATION SHEETS AND THE NAME GIVEN FROM THE LADY WHO TAUGHT YOU HOW TO TAKE THIS. ALTHOUGH PHARMACISTS ARE EXCELLENT RESOURCES, THEIR KNOWLEDGE WITH ARIKAYCE IS LIMITED. IT IS IMPORTANT TO USE THE CORRECT RESOURCES. I WENT TO THE UNIVERSITY OF TEXAS TYLER WHICH HAS A GREAT RESEARCH PROGRAM ON THIS TOPIC. i HOPE THIS MAKES SENSE BECAUSE MY BRAIN IS NOT WOKING SO GREAT THESE DAYS.

Hauoli, good for you, doing all this great exercise (brisk walking and yoga) which really does help expand your lungs, and thus helps your breathing!

I know it's difficult for many people to get in exercise daily, but I'd recommend people start slowly with a 30 minute walk each day. Finding the 'right' yoga class can be a challenge, since there is really little uniformity in yoga practices/teachers. I also recommend that if you can find a class that fits your needs and you feel 75% comfortable with, give it a sustained try (not just one or twice). Took me quite awhile to get with a yoga class/instructor that meets my needs and I look forward to going to. And many of us in the class do end up laughing at our yoga inadequacies!

I admire you trying different things to help with your lungs, as well as your perseverance!

I had trouble with Arikayce, also. Was on it for 3 days, had terrible ringing in my ears and diarrhea (the lasted for 2 months afterwards!). Was so hopefully that this was THE cure.

I do take yoga classes and the breathing exercises do help. I do agree that you need to try different teachers until you find the one that you feel comfortable with and meets your needs. I love walking when the weather is nice, though I do get winded.

Can you please tell me what are the Big 3?
Thank you!

@pandora the big 3 are three antibiotics, Azithromycin, rifampicin, and ethambutol, which are used to knock back types of MAC . take care Heather