1. < MAC & Bronchiectasis

Anyone have cavitary MAC?

Posted by maureen2022 @maureen2022, May 23, 2022

Hi everyone,
I am 46 yo woman diagnosed with MAC. I have no bronchiectasis, but I have cavitation in one of the nodules. I started the meds 3 months ago and only mil side effects. I follow a good diet and lots of whole foods / probiotic & fermented food which helps. I was told I am a strange "bad luck" case since I have cavitation.

I was wondering if anyone else had cavitary disease and if it felt weird once the meds started. I never coughed or had a fever much but now I do cough a bit and feels like things are moving around. Any one else have cavitation and stories of how this felt as it was healing?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

suzyqueue | @suzyqueue | Sep 9, 2023
In reply to @mokie "Hi, Suzy Thanks for responding! I'm glad of your success. May I ask a follow up...." + (show)
@mokie

Hi, Suzy

Thanks for responding! I'm glad of your success. May I ask a follow up. How long since you completed the Arikayce treatment. I'm trying to find out if people get hearing loss following the treatment (down the road) as I read online some do. I am grateful for your insights and advice.

Mokie

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Hi Mokie. I'm still on it...3 times a week. Once I started getting the little bit of tinnitus, my doctors took me off for a couple weeks. Turns out Arikayce wasn't the cause

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mokie | @mokie | Sep 9, 2023

I am glad that it is working for you, and you're managing the regimen. Thanks so much for taking the time with a newbie. I am afraid of inhaling the stuff because of bronchiectasis, which makes the bronchioles not expand and contract as they should. My specialist ordered arikayce without discussing the procedure or anything about it. Another doctor strongly urged me to get the arikayce injections. Not sure always what the best course is. Arikayce reps are phoning me all the time.

Mokie

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2 replies
Rick | @rstel7272 | Sep 9, 2023
In reply to @mokie "Hi, Rick I am considering being treated with Arikayce because of cavitary NTM (I also have..." + (show)
@mokie

Hi, Rick

I am considering being treated with Arikayce because of cavitary NTM (I also have bronchiectasis). I am trying to figure out if the nebulized Arikayce really compromises one's hearing a lot, a medium amount or a little. I'm seeing all different things online. Can you speak to this issue?

Appreciatively,
Mokie

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Moxie, I had/have excellent hearing before, during and after the arikayce treatment. I did have very annoying tinnitus that went away after I stopped treatment

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Rick | @rstel7272 | Sep 9, 2023
In reply to @mokie "I am glad that it is working for you, and you're managing the regimen. Thanks so..." + (show)
@mokie

I am glad that it is working for you, and you're managing the regimen. Thanks so much for taking the time with a newbie. I am afraid of inhaling the stuff because of bronchiectasis, which makes the bronchioles not expand and contract as they should. My specialist ordered arikayce without discussing the procedure or anything about it. Another doctor strongly urged me to get the arikayce injections. Not sure always what the best course is. Arikayce reps are phoning me all the time.

Mokie

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I did Amikacin IV for 12 weeks long before Arikayce inhaled. Both are tough, if you could do the inhaled first it might be better if you can tolerate it. You can stop if the side effects are bad or they can alter the dosage/days

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1 reply
tconz | @tconz | Sep 10, 2023
In reply to @mokie "I am glad that it is working for you, and you're managing the regimen. Thanks so..." + (show)
@mokie

I am glad that it is working for you, and you're managing the regimen. Thanks so much for taking the time with a newbie. I am afraid of inhaling the stuff because of bronchiectasis, which makes the bronchioles not expand and contract as they should. My specialist ordered arikayce without discussing the procedure or anything about it. Another doctor strongly urged me to get the arikayce injections. Not sure always what the best course is. Arikayce reps are phoning me all the time.

Mokie

Jump to this post

I started the inhaled Amikacin in June and in the beginning it caused me to cough during the treatment. I mix it with Sodium Chloride (per doctors orders) so it isn't as harsh. After a week that all went away. I have Zero side effects and hope the Amakacin is helping close my cavity. I certainly had to give it a try.

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mokie | @mokie | Sep 12, 2023

Do you know what amount and percentage of Sodium Chloride? I was thinking of telling my doctor since I don't think he knows about that. It was so helpful hearing this!! Thank you!

Mokie

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mokie | @mokie | Sep 12, 2023
In reply to @rstel7272 "I did Amikacin IV for 12 weeks long before Arikayce inhaled. Both are tough, if you..." + (show)
@rstel7272

I did Amikacin IV for 12 weeks long before Arikayce inhaled. Both are tough, if you could do the inhaled first it might be better if you can tolerate it. You can stop if the side effects are bad or they can alter the dosage/days

Jump to this post

Hi, Rick

I really appreciate your helpful feedback. I have heard so many different things about Amikacin that learning what someone actually experienced is so valuable. Praying that you do better every day.

Mokie

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reneemc | @reneemc | Dec 9 12:48am
In reply to @suzyqueue "I've been on the Arikayce for 3 years. Started out every day for 1st 2 yrs...." + (show)
@suzyqueue

I've been on the Arikayce for 3 years. Started out every day for 1st 2 yrs. Now 3 times a week

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Are you testing negative now?

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reneemc | @reneemc | Dec 9 12:07pm

Maureen , I certainly identify with feeling things moving in your back and chest. Are you still experiencing this and are you still on the antibiotics?

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