1. < MAC & Bronchiectasis

Mac question: Arikayce Inhaler Antibiotic

Posted by jr2366 (Jennifer) @jr2366, Dec 26, 2020

hi all I have a question does anyone know if the medication from arikayce made them sort of feeling little bit more congested and do you think in a few months from being on this inhaler antibiotic pain in the lung will get better in time. i'm only on it for about 9 days now. getting frustrated already I feel like crying I have no voice and not sure if it will come back. I feel like I'm holding back from going to see family sometimes because I can't even speak with hardly no voice. I'm going to call the pharmacist today about those lozenges called strepfen to see if its safe to try them. has anyone found there voice was much better from trying them? I definitely need my voice I'm getting so frustrated thanks to anyone who can help thank you so much.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 4, 2021
In reply to @jr2366 "how long were you on the arikayce Heather must be great to not have to do..." + (show)
@jr2366

how long were you on the arikayce Heather must be great to not have to do anymore what now i was just wondering do you also have the bronchiectasis? i do lucky me.

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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

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2 replies
jr2366 (Jennifer) | @jr2366 | Mar 4, 2021
In reply to @sueinmn "I think most of us have bronchiectasis - it has been 3 years since my diagnosis,..." + (show)
@sueinmn

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

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That’s awesome to hear good for you

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nannette | @nannette | Mar 4, 2021
In reply to @sueinmn "I think most of us have bronchiectasis - it has been 3 years since my diagnosis,..." + (show)
@sueinmn

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

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@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

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rvan | @rvan | Mar 4, 2021

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

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hauoli | @halford | Mar 4, 2021

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

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1 reply
degree | @degree | Mar 30, 2021

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.

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Paula_MAC-2007 | @Paula_MAC2007 | Mar 30, 2021
In reply to @halford "Thank you Sueinmn and everyone else. I have Bronchiectasis and MAC . My Dr has me..." + (show)
@halford

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

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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!

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1 reply
goatlady | @goatlady | Mar 30, 2021
In reply to @Paula_MAC2007 "Hauoli, good for you, doing all this great exercise (brisk walking and yoga) which really does..." + (show)
@Paula_MAC2007

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!

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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.

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pandora24 | @pandora24 | Apr 27, 2021
In reply to @judyjo "HI, Has anyone been on Arikayce? I'm 3 months in plus on the big 3. I..." + (show)
@judyjo

HI,
Has anyone been on Arikayce? I'm 3 months in plus on the big 3. I have hoarseness that persists and one negative sputum. Did your hoarseness subside? How long were you on Arikayce and did it work long term? Thank you.

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

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heathert | @heathert | Apr 27, 2021

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

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