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”

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

@lweirdo1

Thanks much. I'm just trying to figure if this is the same as this Albuterol that they have me using. Same thing?

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My lung specialist at Cedars just told me that using 7% Saline was like inhaling Fire!
Now I'm scared.

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@lweirdo1

My lung specialist at Cedars just told me that using 7% Saline was like inhaling Fire!
Now I'm scared.

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It all depends on the person. I have never had any trouble inhaling 7% saline. The first time, I coughed a bit while inhaling, but that was the extent. It doesn't feel uncomfortable.

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@lweirdo1

My lung specialist at Cedars just told me that using 7% Saline was like inhaling Fire!
Now I'm scared.

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So did they explain why? Or prescribe it? I have hyper-reactive airways, and it doesn't give me any problem.
Funny story though. We went on a short trip and I left my nebulizer home. Last neb was Friday morning. Sunday afternoon I got a coughing spell. The mucus that came up still tasted salty! So it sits in there and bathes the tissues...
You might want to refer them to the following link from National Jewish Health, which lists 7%saline as part of the airway health routine.
https://www.nationaljewish.org/NJH/media/ProEd/NTM%20Provider%202019/McShane-Bronchiectasis-NEW.pdf
Sue

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@lweirdo1

My lung specialist at Cedars just told me that using 7% Saline was like inhaling Fire!
Now I'm scared.

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Some of us cannot tolerate 7% or even 3%. I was started on 7% when I was first diagnosed with bronchiectasis in 2011. I used it twice a day for years without any problem. But eventually I could not use it. I would inhale nebulized 7% and immediately start coughing. After 5-10 minutes the coughing would finally slow and I would try inhaling the 7% again but the coughing would start again. I had to stop using it.

When I changed pulmonologists in 2018, my new doctor prescribed 3%. Although I coughed a lot I was able to use it for a year or two but then the bad coughing started right after the first inhale and continued just like the 7% and I stopped.
Last year, Dr McShane who has treated my bronchiectasis. MAC and other organisms, sent me an article about the efficacy of .9% in moving sputum out and I have been able to use it.

I believe that I have trouble with saline because I have a lot of inflammation. I have chronic bronchitis in addition to bronchiectasis and my lungs are very fragile and absolutely do not want any salt on them.

We are all different and you may be ok with 7%. If not maybe you can use 3%. But if your lungs will not tolerate either of these, then .9% will help get the sputum out although it will not kill any bacteria.

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@rits

Some of us cannot tolerate 7% or even 3%. I was started on 7% when I was first diagnosed with bronchiectasis in 2011. I used it twice a day for years without any problem. But eventually I could not use it. I would inhale nebulized 7% and immediately start coughing. After 5-10 minutes the coughing would finally slow and I would try inhaling the 7% again but the coughing would start again. I had to stop using it.

When I changed pulmonologists in 2018, my new doctor prescribed 3%. Although I coughed a lot I was able to use it for a year or two but then the bad coughing started right after the first inhale and continued just like the 7% and I stopped.
Last year, Dr McShane who has treated my bronchiectasis. MAC and other organisms, sent me an article about the efficacy of .9% in moving sputum out and I have been able to use it.

I believe that I have trouble with saline because I have a lot of inflammation. I have chronic bronchitis in addition to bronchiectasis and my lungs are very fragile and absolutely do not want any salt on them.

We are all different and you may be ok with 7%. If not maybe you can use 3%. But if your lungs will not tolerate either of these, then .9% will help get the sputum out although it will not kill any bacteria.

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Thanks much - that gives me other ideas to consider!

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@sueinmn

So did they explain why? Or prescribe it? I have hyper-reactive airways, and it doesn't give me any problem.
Funny story though. We went on a short trip and I left my nebulizer home. Last neb was Friday morning. Sunday afternoon I got a coughing spell. The mucus that came up still tasted salty! So it sits in there and bathes the tissues...
You might want to refer them to the following link from National Jewish Health, which lists 7%saline as part of the airway health routine.
https://www.nationaljewish.org/NJH/media/ProEd/NTM%20Provider%202019/McShane-Bronchiectasis-NEW.pdf
Sue

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Thanks much. I have to try something to try and fight this off. The meds are not really doing it!

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Aside from being stunningly handsome, I’ve been symptom- free for months. Haven’t “nebbed” for weeks. No meds.
Two Pulmo’s have me in their records as positive for both Bronch and Mac.

My wife worries at my cavalier attitude toward self-care. I‘ll likely resume a daily neb session soon to insure domestic tranquility.

My history sorta compels me to suspect that I probably have a relatively benign infection. Let’s laugh at the Devil! Giggles, Don (Thumperguy)

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@thumperguy

Aside from being stunningly handsome, I’ve been symptom- free for months. Haven’t “nebbed” for weeks. No meds.
Two Pulmo’s have me in their records as positive for both Bronch and Mac.

My wife worries at my cavalier attitude toward self-care. I‘ll likely resume a daily neb session soon to insure domestic tranquility.

My history sorta compels me to suspect that I probably have a relatively benign infection. Let’s laugh at the Devil! Giggles, Don (Thumperguy)

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I'm joining the club!
Pulmo visit today, best CT and spirometry results ever!
New diagnosis -current tightness and shortness of breath are the result of asthma, not my Bronchiectasis.
Medications changed to try to open and soothe airways. Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily.
New routine: Symbicort, Mucinex tandNAC twices a day, singulair and Ellipta Incruse once a day. Neb ONLY for severe attack or exacerbation...
Also, according to pulmo, likely to try alternatives if MAC positive in future, based on current guidelines and my prior reactions.
Doc and respiratory therapists were as happy as me - my numbers are best in 5 years.
Sue

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Wow, “best numbers in five years! Keep kicking it girl. Don

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@sueinmn

I'm joining the club!
Pulmo visit today, best CT and spirometry results ever!
New diagnosis -current tightness and shortness of breath are the result of asthma, not my Bronchiectasis.
Medications changed to try to open and soothe airways. Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily.
New routine: Symbicort, Mucinex tandNAC twices a day, singulair and Ellipta Incruse once a day. Neb ONLY for severe attack or exacerbation...
Also, according to pulmo, likely to try alternatives if MAC positive in future, based on current guidelines and my prior reactions.
Doc and respiratory therapists were as happy as me - my numbers are best in 5 years.
Sue

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Hi Sue. You must be feeling like your riding a cloud. So happy for you.
I wonder what you meant with the sentence, "Stop all news, including 7% saline, unless an exacerbation. Continue airway clearance daily." What airway clearance in particular? I thought that is what nebbing was for. Faye

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