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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extracare808 | @extracare808 | Sep 21, 2021
In reply to @janeta "Interesting that you ask that ... I've seen both written in different parts of my chart...." + (show)
@janeta

Interesting that you ask that ... I've seen both written in different parts of my chart. The pulm doc always says MAI; my ID doc says MAC; my last sputum said MAC. I'm sure I saw MAI on an early sputum. I presumed they were essentially the same.

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Hi Janeta,

Regarding use of term 'MAI' vs 'MAC', National Jewish Health video link below to Dr. Daley's explanation of the terminology and the various species. Starts at minute 15:40. Basically, 'MAI' is an old term used when they were only aware of 2 species. Since they've discovered that there are actually 12 different species, it has been renamed 'MAC'. I'm guessing that older doctors still use the old term, especially since few of them have much experience in actually treating the condition, let alone keeping up to date with the research.

REPLY
marlin | @marlin | Nov 3, 2021

Hello All,

I have Mac diagnosed 2.5 years ago went on big 3 for 2 years. Recent follow up ct showed new nodules culture positive for Mac awaiting antibiotic susceptibilities now. Treated locally by pulmonologist who is sending me to new local ID specialist. May also get second opinion from National Jewish as well which my local doc is happy to send me to if I want. I hoping I don't have any antibiotic resistant strains and can start on big 3 again as well as Arikayce the inhaled amikacin. Question... for those that are on Arikayce did you your Dr. put you on IV antibiotics first or start you directly on the inhaled version? It seems that the inhaled form has better lung penetration and less likely to cause systemic side effects like renal failure and hearing issues so would prefer to go that route. I don't have bronchiectasis just long term asthma treated with Flovent that I think made me susceptible to Mac. I'm off the Flovent now but was just on a reduced dose my first round of the big three. Thanks

REPLY
3 replies
Nancy C | @nac1 | Nov 5, 2021
In reply to @marlin "Hello All, I have Mac diagnosed 2.5 years ago went on big 3 for 2 years...." + (show)
@marlin

Hello All,

I have Mac diagnosed 2.5 years ago went on big 3 for 2 years. Recent follow up ct showed new nodules culture positive for Mac awaiting antibiotic susceptibilities now. Treated locally by pulmonologist who is sending me to new local ID specialist. May also get second opinion from National Jewish as well which my local doc is happy to send me to if I want. I hoping I don't have any antibiotic resistant strains and can start on big 3 again as well as Arikayce the inhaled amikacin. Question... for those that are on Arikayce did you your Dr. put you on IV antibiotics first or start you directly on the inhaled version? It seems that the inhaled form has better lung penetration and less likely to cause systemic side effects like renal failure and hearing issues so would prefer to go that route. I don't have bronchiectasis just long term asthma treated with Flovent that I think made me susceptible to Mac. I'm off the Flovent now but was just on a reduced dose my first round of the big three. Thanks

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Somewhere I read that Arikayce costs $11,000 year! Is that true?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 5, 2021
In reply to @marlin "Hello All, I have Mac diagnosed 2.5 years ago went on big 3 for 2 years...." + (show)
@marlin

Hello All,

I have Mac diagnosed 2.5 years ago went on big 3 for 2 years. Recent follow up ct showed new nodules culture positive for Mac awaiting antibiotic susceptibilities now. Treated locally by pulmonologist who is sending me to new local ID specialist. May also get second opinion from National Jewish as well which my local doc is happy to send me to if I want. I hoping I don't have any antibiotic resistant strains and can start on big 3 again as well as Arikayce the inhaled amikacin. Question... for those that are on Arikayce did you your Dr. put you on IV antibiotics first or start you directly on the inhaled version? It seems that the inhaled form has better lung penetration and less likely to cause systemic side effects like renal failure and hearing issues so would prefer to go that route. I don't have bronchiectasis just long term asthma treated with Flovent that I think made me susceptible to Mac. I'm off the Flovent now but was just on a reduced dose my first round of the big three. Thanks

Jump to this post

Hi @marlin and @nac1, you'll notice that I moved your questions about Arikayce to this existing discussion. I did this so you can read through past relevant post and to connect with other members like @irene5 @sounder27 @diane36 @jr2366 @yaggi01 @judyhodgern who have used Arikayce and may be able to share experiences and answer questions re:
1) did you start on IV antibiotics first or start directly on the inhaled version?
2) cost of Arikayce.

You may also be interested in this related discussion:
- Arikayce in combination with antibiotics for MAC treatment https://connect.mayoclinic.org/discussion/arikayce-in-combination-with-antibiotics-for-mac-treatment

@marlin, when are you starting treatment?

REPLY
1 reply
irene5 Irene Estes | @irene5 | Nov 5, 2021
In reply to @nac1 "Somewhere I read that Arikayce costs $11,000 year! Is that true?" + (show)
@nac1

Somewhere I read that Arikayce costs $11,000 year! Is that true?

Jump to this post

Arikayce is approximately $133,000 a year, but they have a program that will cover the 11,000$ per month based on your income and other insurance. Thankfully, I don’t pay anything. I could not do the Arikayce plus the Big 3 if I had to spend megabucks. Once they called and said, “That will be $10,800 or some similar amount for the month.” I just about choked to death! I told them I couldn’t do it then. They connected me with the company that helps financially, and then I was good to go. I have been on the Arikayce since 6/8/2020. irene5

REPLY
1 reply
irene5 Irene Estes | @irene5 | Nov 5, 2021
In reply to @marlin "Hello All, I have Mac diagnosed 2.5 years ago went on big 3 for 2 years...." + (show)
@marlin

Hello All,

I have Mac diagnosed 2.5 years ago went on big 3 for 2 years. Recent follow up ct showed new nodules culture positive for Mac awaiting antibiotic susceptibilities now. Treated locally by pulmonologist who is sending me to new local ID specialist. May also get second opinion from National Jewish as well which my local doc is happy to send me to if I want. I hoping I don't have any antibiotic resistant strains and can start on big 3 again as well as Arikayce the inhaled amikacin. Question... for those that are on Arikayce did you your Dr. put you on IV antibiotics first or start you directly on the inhaled version? It seems that the inhaled form has better lung penetration and less likely to cause systemic side effects like renal failure and hearing issues so would prefer to go that route. I don't have bronchiectasis just long term asthma treated with Flovent that I think made me susceptible to Mac. I'm off the Flovent now but was just on a reduced dose my first round of the big three. Thanks

Jump to this post

Yes, you are correct about Arikayce with better lung penetration and fewer systemic side effects. I have never been placed on IV antibiotics. irene5

REPLY
rits | @rits | Nov 6, 2021
In reply to @irene5 "Arikayce is approximately $133,000 a year, but they have a program that will cover the 11,000$..." + (show)
@irene5

Arikayce is approximately $133,000 a year, but they have a program that will cover the 11,000$ per month based on your income and other insurance. Thankfully, I don’t pay anything. I could not do the Arikayce plus the Big 3 if I had to spend megabucks. Once they called and said, “That will be $10,800 or some similar amount for the month.” I just about choked to death! I told them I couldn’t do it then. They connected me with the company that helps financially, and then I was good to go. I have been on the Arikayce since 6/8/2020. irene5

Jump to this post

I am so sorry that you have been on it so long. I hope it works soon.

REPLY
1 reply
marlin | @marlin | Nov 6, 2021
In reply to @colleenyoung "Hi @marlin and @nac1, you'll notice that I moved your questions about Arikayce to this existing..." + (show)
@colleenyoung

Hi @marlin and @nac1, you'll notice that I moved your questions about Arikayce to this existing discussion. I did this so you can read through past relevant post and to connect with other members like @irene5 @sounder27 @diane36 @jr2366 @yaggi01 @judyhodgern who have used Arikayce and may be able to share experiences and answer questions re:
1) did you start on IV antibiotics first or start directly on the inhaled version?
2) cost of Arikayce.

You may also be interested in this related discussion:
- Arikayce in combination with antibiotics for MAC treatment https://connect.mayoclinic.org/discussion/arikayce-in-combination-with-antibiotics-for-mac-treatment

@marlin, when are you starting treatment?

Jump to this post

Thanks for info. Waiting for susceptibilities to come back and visit with ID doc so will know more in next few weeks. Does anyone know if insurance typically covers arikayce. I have bc/bs typically good coverage after deductible met.

REPLY
irene5 Irene Estes | @irene5 | Nov 6, 2021
In reply to @rits "I am so sorry that you have been on it so long. I hope it works..." + (show)
@rits

I am so sorry that you have been on it so long. I hope it works soon.

Jump to this post

Thank you @rits .Admittedly it has not been a walk in the park, but I’ll take it any day over the alternative. I have a huge caring family, a persistent faith in the good God, and two awesome and young knucklehead GSD’s who tug at my heartstrings and my skinny arms and literally make me get up off the couch. 🙂 irene

REPLY
Barb | @1065408 | Mar 2, 2022

Hi Everyone. Considering nebulizing Arikayce only for MAC infection. Has anyone done this, and how successful was it? Unable to do parts of Big 3 due to drug interactions for other conditions, allergies and drug sensitivities. Diagnosed MAC in 2017, never treated, was livable. At this point plummeting oxygen levels and shortness of breath leave no choice. Your input is really appreciated. Barb

REPLY
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