1. < MAC & Bronchiectasis

How does bronchiectasis progress?

Posted by @ling @wangling, Mar 31, 2023

Hi all,
As I am reading, that bronchiectasis is a chronic and progressive disease.
How does it progress based on your experience? I seem to remember that some people are able to keep the condition stable. Does cough make the condition worse?Your experience is greatly appreciated.
Thanks!
Ling

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tbg | @tbg | Apr 20, 2023
In reply to @irenea8 "I have two nebulizers and two battery operated back up options if the electricity were to..." + (show)
@irenea8

I have two nebulizers and two battery operated back up options if the electricity were to go out. In my case I could not miss a day. If you can afford it have at least one back up option!

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What battery backup nebulizer would you recommend? Thank you.

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1 reply
irenea8 | @irenea8 | Apr 20, 2023
In reply to @tbg "What battery backup nebulizer would you recommend? Thank you." + (show)
@tbg

What battery backup nebulizer would you recommend? Thank you.

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The Pari Trek bought with rechargeable battery back up is a good one. Not cheap. The other one i have is a hand held by Omron. It is a mesh nebulizer that runs on regular batteries. Mesh is usually not recommended with saline but they say this one works with saline. I have not tried it yet so cannot say. Today we have an electrician coming and our electricity will be off most of the day so i grateful to have the back ups!

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jave | @jave | Apr 20, 2023

What are "the big three" everyone keeps talking about?

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kwi | @kwi | Apr 20, 2023
In reply to @jave "What are "the big three" everyone keeps talking about?" + (show)
@jave

What are "the big three" everyone keeps talking about?

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The big three refers to the regimen of 3 antibiotics given to treat NTM/MAC, usually Ethambutol, Azithromycin, Rifampin. They time period is not short. Treatment goes on for many months and even years.

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diane47 | @diane47 | Apr 20, 2023

Yes, exercise is so important. It is difficult for me to get truly aerobic exercise -- I just can't seem to walk fast enough! But I swim for 20 minutes 3 times a week and try to walk for about 25 minutes on the other days. After 20 to 25 minutes I'm just too tired to do more. But even this little bit of exercise is probably helpful. I appreciate your encouraging email.

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Arlo | @equanimous | Apr 21, 2023
In reply to @gej53 "Hello! I have bronchiectasis without MAC at this time. My pulmonologist started me on a nebulizer..." + (show)
@gej53

Hello! I have bronchiectasis without MAC at this time. My pulmonologist started me on a nebulizer right away. He then advanced me to a Hillrom volara nebulizer and a percussion vest. Since using these I have more production of sputum. Have been following with pulmonology for 3 years now and have had a stable CT since my twice daily nebulizing. Is your doctor a pulmonologist? The nebulizing has been so beneficial to me and I believe has helped to keep my lungs healthy. The side effects of the big 3 seemed pretty harsh. Would weigh that carefully. Is an infectious disease doctor wanting to prescribe those? There people on this forum {especially the mentors} who can give you great insight to the treatment. It"s hard to advise not knowing the severity of how you are feeling but wish you the best of luck.

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What did your dr prescribe for the nebulizer?

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gej53 | @gej53 | Apr 21, 2023

I have been through a couple with prescriptions. Am presently using the Hillrom Volara system which provides a 10 minute session that alternates with a pulsating inhale and regular inhale. When I travel I have a Pari travel nebulizer which I really like and think it works really well. You can plug it into your car and also to an electrical outlet when traveling. I use 7% saline after joining this site to keep MAC at bay.

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scoop | @scoop | Apr 21, 2023

@gej53 Would it be possible to say more about the Hillrom Volara system? How helpful has it been for you?

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jave | @jave | Apr 22, 2023
In reply to @kwi "The big three refers to the regimen of 3 antibiotics given to treat NTM/MAC, usually Ethambutol,..." + (show)
@kwi

The big three refers to the regimen of 3 antibiotics given to treat NTM/MAC, usually Ethambutol, Azithromycin, Rifampin. They time period is not short. Treatment goes on for many months and even years.

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Thank you.
I've heard the side effects of 18 months of azithromycin is kidney failure. Do you know about the other two?

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2 replies
kwi | @kwi | Apr 22, 2023
In reply to @jave "Thank you. I've heard the side effects of 18 months of azithromycin is kidney failure. Do..." + (show)
@jave

Thank you.
I've heard the side effects of 18 months of azithromycin is kidney failure. Do you know about the other two?

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I do not know about kidney failure with azithromycin, but it can affect the heart rhythm in some people. Ethambutol can potentially cause vision loss so it’s important to be checked often by an ophthalmologist while on it. I don’t know what else Rifampin other than it can make tears, sweat, and urine orange. The treatment with these three drugs have made a difference with those with MAC, others with no or few symptoms have opted not to take them.

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