1. < MAC & Bronchiectasis

Remission: When do you consider yourself in remission from MAC?

Posted by thumperguy @thumperguy, May 23, 2022

Okay, so let’s say you’ve been appointed to proclaim from on high how many days, weeks, months or years of being symptom free must come and go before you may, without fear of making a fool of yourself, declare yourself to be “cured”

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crepass | @crepass | Jun 30, 2022
In reply to @thumperguy "At risk of losing my ticket to ride here I’ll report not nebulizing for months and..." + (show)
@thumperguy

At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?

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I too am curious about bronchiectasis/mac and the ability to one day not having to nebulize daily (tho I do have it down to once daily) and skipping a day once in a blue moon. Will follow your progress closely. Your wit has uplifted me many a day. Please stay on board!

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nana43 | @nana43 | Jul 1, 2022

Can anyone tell me what the thrice weekly dosage is for MAC normally? I think my doc has put me on an extremely high dose of ethambutol -400mg!
The other drugs seem to be in line with what I have read.

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2 replies
dlynn1210 | @dlynn1210 | Jul 1, 2022
In reply to @nana43 "Can anyone tell me what the thrice weekly dosage is for MAC normally? I think my..." + (show)
@nana43

Can anyone tell me what the thrice weekly dosage is for MAC normally? I think my doc has put me on an extremely high dose of ethambutol -400mg!
The other drugs seem to be in line with what I have read.

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That is what I have been on for almost two years (400 mg) so sounds within the normal dosage.

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1 reply
dlynn1210 | @dlynn1210 | Jul 1, 2022
In reply to @dlynn1210 "That is what I have been on for almost two years (400 mg) so sounds within..." + (show)
@dlynn1210

That is what I have been on for almost two years (400 mg) so sounds within the normal dosage.

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I’m also on Rifamin 300 mg and Azithromycin 250 mg.

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woot | @woot | Jul 1, 2022
In reply to @thumperguy "Sue, “the best you might be willing to say” is well stated and certainly adequate. It’s..." + (show)
@thumperguy

Sue, “the best you might be willing to say” is well stated and certainly adequate.
It’s been several years since a flare up with fever. Discovery of 7% saline was a watershed event in the management of Mac/Bronch. I’m about ready to “test the limit” to discover how “infrequently” I can nebulize before causing a febrile exacerbation. Don

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Don, you and I are the same age, similar time since last big flare up. What’s your motivation to test reducing nebulizing with saline?
Linda (woot)

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jeannie55 | @jeannie55 | Jul 2, 2022
In reply to @nana43 "Can anyone tell me what the thrice weekly dosage is for MAC normally? I think my..." + (show)
@nana43

Can anyone tell me what the thrice weekly dosage is for MAC normally? I think my doc has put me on an extremely high dose of ethambutol -400mg!
The other drugs seem to be in line with what I have read.

Jump to this post

Hi! I began the Big 3 about three weeks ago, taking the meds M, W, and F. I take 500mg Azithromycin, 600mg Rifampin, and 1200mg Ethambutol.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 2, 2022
In reply to @thumperguy "At risk of losing my ticket to ride here I’ll report not nebulizing for months and..." + (show)
@thumperguy

At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?

Jump to this post

Hey Don. My Mayo dr who has since retired once told me that he has only seen a handful of patients beat mac and that was only after being on antibiotics for 10 years. I have tested negative for Mac since 2014, and had been on monthly maintenance antibiotics for 9 yrs. I was taken off of the monthly rotating antibiotics in Dec of 2021, and now seven months later; I have MAI and aspergillus. The real deal is: although I tested negative for all of those years; the mac is still always with us, it is just at an undetectable level. My going off of the monthly meds was not a good idea, but it was my dr's idea, not mine. I am working on getting back on my prophylactic regimine. I wouldn't stop with the saline either, I got super lax with it, and I feel like that contributed to get this infection again. It is common for patients to get weary of their meds and nebulizing and take vacations from them. It is ok to do that, it just cannot be a very long vacation. Stay smart, and stay well. Hugs!

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1 reply
thumperguy | @thumperguy | Jul 3, 2022
In reply to @windwalker "Hey Don. My Mayo dr who has since retired once told me that he has only..." + (show)
@windwalker

Hey Don. My Mayo dr who has since retired once told me that he has only seen a handful of patients beat mac and that was only after being on antibiotics for 10 years. I have tested negative for Mac since 2014, and had been on monthly maintenance antibiotics for 9 yrs. I was taken off of the monthly rotating antibiotics in Dec of 2021, and now seven months later; I have MAI and aspergillus. The real deal is: although I tested negative for all of those years; the mac is still always with us, it is just at an undetectable level. My going off of the monthly meds was not a good idea, but it was my dr's idea, not mine. I am working on getting back on my prophylactic regimine. I wouldn't stop with the saline either, I got super lax with it, and I feel like that contributed to get this infection again. It is common for patients to get weary of their meds and nebulizing and take vacations from them. It is ok to do that, it just cannot be a very long vacation. Stay smart, and stay well. Hugs!

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Teri, I haven’t “Nebbed” for several months without return of symptoms. I’ll report results going forward. Don

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garry | @garry | Jul 4, 2022

Terry I wonder what med's u were on for all those years? Did he change them up ? The only one that seems to work for me with mac is azithromycin.Very hard on the stomach. Garry Canada

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lweirdo1 | @lweirdo1 | Jul 10, 2022

What's this 7% saline everybody is talking about? Can you fill me in?

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