1. < MAC & Bronchiectasis

NAC does it work?

Posted by spider109 @spider109, Feb 10 2:14pm

Now I’ve read a lot of people on this forum saying they use NAC to help thin the mucus for us who have Bronchiectasis. I would like to know how long using it before people started seeing a difference in the thinning of the mucus. Now again I know the old cliche everyone is different, and I realize some members also regularly take mucinex. So how can you tell it’s JUST the NAC that’s helping to thin it? There must be a rough idea of the length of time taking it before you see a difference. I have a Pulmonologist in Vermont that I see when I’m up North and also one at Mayo Jax, when I’m in Florida, and both will only say that”It’s generally considered safe to use” I think a lot of providers are timid of recommending it because it’s NOT FDA approved, and just that reason alone is why alot of providers won’t recommend different treatments. Anyway a rough estimate of using before seeing a difference would be appreciated. Again just your experience with it. Thank-you we all take enough pills now as it is, no sense taking another one if it’s not working.

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bayarea58 | @bayarea58 | Feb 11 1:56pm
In reply to @blm1007blm1007 ""@"bayarea58 "@"jill6063 I wonder if the two of you will be in Denver at the same..." + (show)
@blm1007blm1007

"@"bayarea58 "@"jill6063
I wonder if the two of you will be in Denver at the same time.
Any information you would feel comfortable sharing, once you are back in home territory, that would apply to most of us BE patients would be helpful and most appreciated.

The one thing that my lead doctor at NJH said to me that is somewhat interesting, he didn't believe it would be harmful if I didn't nebulize for a period of time, say a week while on a trip. Wonder if that is what other lead doctors at NJH are comfortable with, with BE patients. Overall, in reality, I could do most all other techniques for airway clearance if I didn't take the compressor and cups for nebulizing.

I realize it also is possibly one's own degree of illness, comfort level, philosophy and belief that must also come into play about the nebulizing while away from home on a week long trip....of course that's with the assurances you will make it home to the "sidekicks" , the nebulizer cup and compressor. Well, I guess I just answered that one as I wrote this. Need to take it 'just in case.'
Any feedback on this doctors statement to me from anyone?
Barbara

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@blm1007blm1007 I go to NJH first week of June, I believe @jill6063 goes late April. I will definitely share about my experience when I get back. If I recall correctly you have mild BE, which may make the difference with regard to a doctor’s comfort level in terms of taking a week off of AC for travel, etc. For those with more extensive BE, or who have frequent exacerbations, I could see a doctor/respiratory therapist making a different recommendation. But AC is a big topic for me to bring to NJH, as my resources here are rudimentary in that regard and not well informed re BE/NTM. Frankly, if it weren’t for this group, I would not be doing AC. So, I am really looking forward to working with a respiratory therapist who can help me improve and refine my AC practices.

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bayarea58 | @bayarea58 | Feb 11 2:05pm
In reply to @jill6063 "For me, adding NAC to my management plan had an immediate and dramatic effect. I was..." + (show)
@jill6063

For me, adding NAC to my management plan had an immediate and dramatic effect. I was unable to produce sputum, but that changed drastically once I started taking NAC. Interestingly, I recently cut down to one dose per day in the morning because I read in this forum that it was causing sleeplessness for some, so I thought maybe that was the culprit for my own nocturna tossing and turning. (I am sleeping better as a result.) I again noticed the change - this time to less production - so much so that I am thinking about adding the second dose back with plans to take it earlier in the afternoon. It’s a question on my list for when I go to National Jewish Health in April!

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@jill6063 are you doing oral or inhaled? I too am unable to produce sputum but it is definitely there, unbudgingly, on my CT so I asked about how I can improve the mucus impaction. My doctor raised NAC, I asked about oral but he preferred inhaled.

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bayarea58 | @bayarea58 | Feb 11 2:23pm
In reply to @lilianna "Bayarea58, can you share what inhaled version prescription your doctor gave you. I was given nacetylcysteine..." + (show)
@lilianna

Bayarea58, can you share what inhaled version prescription your doctor gave you. I was given nacetylcysteine nebulizer 6 ml but I cannot use it- I cough bad during and after the inhalation.

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@lilianna I decided yesterday to fill the prescription and try it, but it comes by mail so I don’t have the actual bottle. The prescription reads “ACETYLCYST 20 % SOL FRES”. The instructions say to mix 3ml with albuterol solution to nebulize. My incomplete understanding is that acetylcysteine comes in different percentages which I assume (but do not know) correlates with different strengths and it is to be mixed with albuterol to neb as it can cause bronchospams. If you are interested, I would suggest you discuss the following with your doctor: 1) % of your prescription, is there a lower percentage that may be more tolerable for you; 2) dosage (I note mine is half of yours); 3) and if you are not nebbing mixed with albuterol, would that help. Again, I have yet to use so I have no personal feedback (yet) but will share once I do.

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bayarea58 | @bayarea58 | Feb 11 2:30pm
In reply to @wangling "Have you tried to nebulize albuterol or levalbuterol solutions? I have mucus plugs on my scans...." + (show)
@wangling

Have you tried to nebulize albuterol or levalbuterol solutions? I have mucus plugs on my scans. I feel the nebbing levalbuterol seems to work better to get mucus out.
Ling

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@wangling yes, I have done periods where I used albuterol (inhaler) before AC and periods where I did not use Albuterol before AC, and have not noticed a difference in terms of productiveness.

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lilianna | @lilianna | Feb 11 7:01pm
In reply to @bayarea58 "@lilianna I decided yesterday to fill the prescription and try it, but it comes by mail..." + (show)
@bayarea58

@lilianna I decided yesterday to fill the prescription and try it, but it comes by mail so I don’t have the actual bottle. The prescription reads “ACETYLCYST 20 % SOL FRES”. The instructions say to mix 3ml with albuterol solution to nebulize. My incomplete understanding is that acetylcysteine comes in different percentages which I assume (but do not know) correlates with different strengths and it is to be mixed with albuterol to neb as it can cause bronchospams. If you are interested, I would suggest you discuss the following with your doctor: 1) % of your prescription, is there a lower percentage that may be more tolerable for you; 2) dosage (I note mine is half of yours); 3) and if you are not nebbing mixed with albuterol, would that help. Again, I have yet to use so I have no personal feedback (yet) but will share once I do.

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Please do. And I will email dr Granchelli- ask her about the % and about using it with levalbuterol. Thank you

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jill6063 | @jill6063 | Feb 11 7:15pm
In reply to @bayarea58 "@jill6063 are you doing oral or inhaled? I too am unable to produce sputum but it..." + (show)
@bayarea58

@jill6063 are you doing oral or inhaled? I too am unable to produce sputum but it is definitely there, unbudgingly, on my CT so I asked about how I can improve the mucus impaction. My doctor raised NAC, I asked about oral but he preferred inhaled.

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My NAC is oral. I didn’t even know there was an option for inhaled!

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paxmundi | @paxmundi | Feb 11 11:41pm
In reply to @cayenne "I use oral NAC 750 mg, every 4-5 days. It doesn’t sound like much but does..." + (show)
@cayenne

I use oral NAC 750 mg, every 4-5 days. It doesn’t sound like much but does thin the mucus within a day or so. In my case, taking it more often can provoke mild hemoptysis. I haven’t tried inhaled

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Thank you for alerting me to the potential hemoptysis as 8 am very hemoptysis-prone. One of the reasons I have stayed away from 7% saline. My hmo doesn’t offer the 3%. But someone here offered an alternative that I am ready to try this week!

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jill6063 | @jill6063 | Feb 12 6:09am

Hi Barbara -
My doctor said I should think of nebulizing like flossing teeth. It doesn’t hurt to miss once in a while, but you don’t want to go long periods without doing it. That makes sense to me. In my mind, the “gunk” can’t take hold if we’re getting it “juicy” (to use McShane’s word) and moving it out with great frequency, but if we miss for a while, it can get gummier and stickier and harder to remove (like plaque on our teeth). My doc only said the part about it being like teeth-flossing, the rest is just my gut sense and understanding based on what he said!

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Beejenigma | @beejenigma | Feb 12 12:54pm
In reply to @oaktree "I've used both the inhaled and oral tablet versions. Can't say that I noticed much of..." + (show)
@oaktree

I've used both the inhaled and oral tablet versions. Can't say that I noticed much of a difference between either version and with or without it.

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I have not noticed anything either!

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mmahlik | @mmahlik | Feb 15 9:58am
In reply to @wangling "Have you tried to nebulize albuterol or levalbuterol solutions? I have mucus plugs on my scans...." + (show)
@wangling

Have you tried to nebulize albuterol or levalbuterol solutions? I have mucus plugs on my scans. I feel the nebbing levalbuterol seems to work better to get mucus out.
Ling

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I started with albuterol nebulizer but had too many side effects. They switched me to levalbuterol and side effects were much better but I think it’s a little less effective. Now I’m on a levalbuterol inhaler instead of nebulizer and it’s going well and takes less time.

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