1. < MAC & Bronchiectasis

Anyone in the Encore Arikayce study?

Posted by lvnl @lvnl, Jul 16 9:59pm

Hello, I've posted a couple q's here & appreciate all the info!
I am now confirmed (2 Sputum samples) w/MAC. My pulmonologist, Dr Addrizzo-Harris at the NYU Medical Center bronchiectasis/NTM program, has given me the option of enrolling in the Encore Arikayce study. She is principal investigator. It's a multi-center study, is anyone else enrolled? Can you share experience? The protocols are pretty demanding but you definitely get closely monitored!
I am very inclined to do it on the 50% chance I can get Arikayce right away as it is shaping up to be much more effective at treating NTM. I am aware of the possible side effects and I've read some of the stories here ranging from bad side effects to none. In both arms of the study, whether I get Arikayce or placebo, they also treat with zithromycin (AZI) and Ethambutol (ETH). No rifampicin. They are testing replacing rifampicin with Arikayce and there is also some evidence that the 2 antibiotics instead of 3 are also effective (if I were to end up a placebo subject).
Very curious to get any comments or advice! Thank you all in advance!

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thorne | @thorne | Jul 27 2:06pm

I did three times a week at the beginning when my voice was hoarse but as I adjusted and my voice returned, I transitioned to daily. I did slowly eat some manuka honey after each treatment but I don't know if it helped. I also have a stable cavity and that did not improve but did not get worse.

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helen1000 | @helen1000 | Jul 27 6:19pm

FYI- THORNE- humidifier seems to be an effective way, keeping vocal folds hydrated, helping with the vibration of the vocal folds and therefore reducing roughness and hoarseness.
https://theconversation.com/how-to-actually-fix-a-lost-voice-according-to-science-hint-lemon-and-honey-doesnt-work-158230t

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lvnl | @lvnl | Jul 27 8:14pm

My doctors advised to stop using a humidifier because they all, every kind, harbor bacteria and aerosolize it, so you breathe it in. The only kind of "humidifier" they think is acceptable is pans of water on the radiators (which must be cleaned & refilled every day). And that only works in the winter.

Everyone has to make their own decisions about how to stay as healthy as possible, maintain our protocols and have a life at the same time! I am finding it really challenging!!

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2 replies
helen1000 | @helen1000 | Jul 27 8:51pm

Just find this today. Any idea whether it is helpful?

Take NAC to prevent drug -induced hearing loss.
https://pubmed.ncbi.nlm.nih.gov/25073872/

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helen1000 | @helen1000 | Jul 28 6:44am
In reply to @lvnl "My doctors advised to stop using a humidifier because they all, every kind, harbor bacteria and..." + (show)
@lvnl

My doctors advised to stop using a humidifier because they all, every kind, harbor bacteria and aerosolize it, so you breathe it in. The only kind of "humidifier" they think is acceptable is pans of water on the radiators (which must be cleaned & refilled every day). And that only works in the winter.

Everyone has to make their own decisions about how to stay as healthy as possible, maintain our protocols and have a life at the same time! I am finding it really challenging!!

Jump to this post

Yes LVNL, I totally agree with you. 🙂 That is a very good point. But maybe we can use saline 0.9%, same as airway clearance. That helps with upper airway spasm and reduce the irritation to vocal cord, of course in my opinion, I am not a medical provider, just use my research skills to analyze it.

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mariegrace | @mariegrace | Jul 28 12:17pm
In reply to @helen1000 "Great to hear thay it did great on you. I was with the NTM team of..." + (show)
@helen1000

Great to hear thay it did great on you. I was with the NTM team of Dr Addrizzo in NYU too. I am starting amikacin inhalation today. Are you on three times a week schedule? Is there any way we can prevent loss of voice or harshness? I heard rinsing with water or using honey to smooth throat. I am so happy for you for your conversion. I also have cavity but it has been stable for 2 years. Heard many positive stores about arikayce for cavity. I am positive on it!

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Hi
When I met with ID on monday, he suggested Arikayce 3x a week with ethambutol+azithromycin MWF.
If Arikayce is used alone, its every day for 6- 12 months.
Good luck!

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mariegrace | @mariegrace | Jul 28 12:22pm
In reply to @lvnl "My doctors advised to stop using a humidifier because they all, every kind, harbor bacteria and..." + (show)
@lvnl

My doctors advised to stop using a humidifier because they all, every kind, harbor bacteria and aerosolize it, so you breathe it in. The only kind of "humidifier" they think is acceptable is pans of water on the radiators (which must be cleaned & refilled every day). And that only works in the winter.

Everyone has to make their own decisions about how to stay as healthy as possible, maintain our protocols and have a life at the same time! I am finding it really challenging!!

Jump to this post

We use a humidifier in bedroom in the winter and have Blueair air purifyers in bedroom and living room.

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jassa | @jassa | Jul 28 2:03pm

I'm interested to know more about this study. I am currently on Arikayce. Is this a new Arikayce product? Are they testing people with MAC? Or, is the purpose of the study to see if 2 antibiotics work with the Arikayce vs. 3 antibiotics?

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1 reply
helen1000 | @helen1000 | Jul 28 3:55pm

Guys did you feel anything in your ears? I started amikaicin inhalation yesterday and already felt ears heated up and a little bit headache. Is it a sign of hearing loss? Will we likely lose only high pitched sound or there are other damage? Thx for any input.

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