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

Posted by thumperguy @thumperguy, May 23 5:38pm

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”

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

Um, I would be afraid to make that pronouncement, Karma being what it is.
Bronchiectasis is, as far as I know, permanent lung damage that makes us forever susceptible to infections by NTM, pseudomonas and other bugs.

So the best I might be willing to say is I don't have an infection right now, have been asymptomatic for over 2 years, and my bronchiectasis is under control.

Are you good with that? What is your "good" interval now?
Sue

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@sueinmn

Um, I would be afraid to make that pronouncement, Karma being what it is.
Bronchiectasis is, as far as I know, permanent lung damage that makes us forever susceptible to infections by NTM, pseudomonas and other bugs.

So the best I might be willing to say is I don't have an infection right now, have been asymptomatic for over 2 years, and my bronchiectasis is under control.

Are you good with that? What is your "good" interval now?
Sue

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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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@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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Hope you keep us updated on how this goes!

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@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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I was so happy to find this forum and think the advice of 7% saline has kept me stable. I am to nebulize twice daily and get tempted to decrease to once and see how it goes. However, if the current practice is working well, and there are times when only once a day can be done, sticking with a regimen that works seems the course to go…..

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@gej53

I was so happy to find this forum and think the advice of 7% saline has kept me stable. I am to nebulize twice daily and get tempted to decrease to once and see how it goes. However, if the current practice is working well, and there are times when only once a day can be done, sticking with a regimen that works seems the course to go…..

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After a year with no exacerbation, I stepped back to once a day nebs. That seemed just fine, so I tried less often. My lungs seem happy with about 4 times a week, but daily airway clearance. Unless pollen is bad….
We'll see what the doc has to say come July. 😉

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@gej53

I was so happy to find this forum and think the advice of 7% saline has kept me stable. I am to nebulize twice daily and get tempted to decrease to once and see how it goes. However, if the current practice is working well, and there are times when only once a day can be done, sticking with a regimen that works seems the course to go…..

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Yes, I'm afraid I'm at the point that unless circumstance occur where it is not possible to neb twice a day, it is in my best interest to keep it up. Having that old pseudomonus come back is worth the effort. I believe my pseudomonus is colonized and I'm just keeping it suppressed. I know all our situations are different but we share what works for us individually.

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@thumperguy @sueinmn Don, I have to agree with Sue in that I'm not sure I want to make a pronouncement being with what karma is! But I love your positivity and I will say I've been about three to four years with no issues and no progression but I'm always knocking on wood. And I owe it to the 7% saline and exercise. But I might try going down to four times a week like Sue. I usually take one day off from nabbing but might do more days off. Nan

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@sueinmn

Um, I would be afraid to make that pronouncement, Karma being what it is.
Bronchiectasis is, as far as I know, permanent lung damage that makes us forever susceptible to infections by NTM, pseudomonas and other bugs.

So the best I might be willing to say is I don't have an infection right now, have been asymptomatic for over 2 years, and my bronchiectasis is under control.

Are you good with that? What is your "good" interval now?
Sue

Jump to this post

What are the symptoms of pseudomonas? It seems to be discussed quite a bit on this forum. My pulmonologist prescribed 3% saline not the 7% everyonecseems to use. How would I know if I have a pseudomonas? M hgv most recent sputum culture was negative for MAC. Thank you

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I thought some would jump on this question. I'm not sure we're all the same but for me it darker sputum, feeling chilled without fever, fatigue and some loss of appetite. You need a sputum check for pseudomonas. You should hear results in just a few days. Hope this helps.

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Karma bit me! Four days after I posted my message, I was hit by an exacerbation driven by pollen, allergies, working outdoors (stupidly) unmasked and asthma.

Six days later, after countless nebs including several at 4 am, addition of budosenide (steroid) nebs, hours of coughing to the point of sore ribs, and closing myself into the double HEPA-filtered house, I am beginning to feel I have turned the corner.

Apparently 7% saline and good airway clearance have kept me healthy enough to be able to avoid another course of oral steroids and antibiotics. But they are in the cupboard if I need them! This is why we never say "cured."
Sue

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@sueinmn

Karma bit me! Four days after I posted my message, I was hit by an exacerbation driven by pollen, allergies, working outdoors (stupidly) unmasked and asthma.

Six days later, after countless nebs including several at 4 am, addition of budosenide (steroid) nebs, hours of coughing to the point of sore ribs, and closing myself into the double HEPA-filtered house, I am beginning to feel I have turned the corner.

Apparently 7% saline and good airway clearance have kept me healthy enough to be able to avoid another course of oral steroids and antibiotics. But they are in the cupboard if I need them! This is why we never say "cured."
Sue

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Sue, sorry to hear about your episode and I'm glad you recovered so quickly. I wonder if you now think it was a mistake to only neb once a day and recently cutting it down to 4 days a week instead of daily?

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@rits

Sue, sorry to hear about your episode and I'm glad you recovered so quickly. I wonder if you now think it was a mistake to only neb once a day and recently cutting it down to 4 days a week instead of daily?

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Believe me, I have been thinking about that. Probably my mistake was not increasing adding levalbuterol right away when the pollen started, since I know tree pollen is my biggest asthma trigger. I had already upped to daily saline, knowing it was coming… I definitely will go to daily with levabuterol for the summer, at this point I will taper from twice a day to once when and if I feel it is wise. Fortunately I have a wonderful handheld nebulizer that I can use wherever I happen to be…
Sue

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