MAC: Just how well do nebs work, anyway?

Posted by Sue, Volunteer Mentor @sueinmn, Jul 8, 2021

Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"

Let me tell you a little story about my past few weeks…
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, … I looked at my trusty green machine and realized it was lonely – I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!

Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.

GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.

Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news – it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that…)

Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.

What has your experience been?
Sue

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

@sueinmn – Have you ever heard if hypertonic saline helps with pseudomonas?

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Hmm, not something I had ever researched, so I took a look on line – look what I found:
Hypertonic saline (6 – 10%) was effective at inhibiting growth of pseudomonas in Cystic Fibrosis patients: https://pubmed.ncbi.nlm.nih.gov/24587256/
And 7% saline, in combination with inhaled gentamicin it was 3X more effective than normal saline (.9%): https://www.nature.com/articles/s41598-020-61413-4

So the short answer is yes, it helps – the final answer is not yet determined, but if I were looking at pseudomonas treatment today, I would probably show these to my doctor and try to find a way to incorporate in treatment. When I had pseudomonas, I had to go through multiple courses of oral levaquin (which scared me) an in haled Tobramycin (which stole my voice.) This looks like it might be an alternative to consider.

Are you fighting pseudomonas right now?

Sue

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@sueinmn

Hmm, not something I had ever researched, so I took a look on line – look what I found:
Hypertonic saline (6 – 10%) was effective at inhibiting growth of pseudomonas in Cystic Fibrosis patients: https://pubmed.ncbi.nlm.nih.gov/24587256/
And 7% saline, in combination with inhaled gentamicin it was 3X more effective than normal saline (.9%): https://www.nature.com/articles/s41598-020-61413-4

So the short answer is yes, it helps – the final answer is not yet determined, but if I were looking at pseudomonas treatment today, I would probably show these to my doctor and try to find a way to incorporate in treatment. When I had pseudomonas, I had to go through multiple courses of oral levaquin (which scared me) an in haled Tobramycin (which stole my voice.) This looks like it might be an alternative to consider.

Are you fighting pseudomonas right now?

Sue

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Yes, I had a bad case right before COVID started and was put on 10 days of cipro which helped and did not appear in cultures again til last week. So ID md has put me back on same for 10 days. 4 days in, feeling better. The 3%saline nebs, done faithfully throughout This past year and a half didn’t touch it. June exacerbation was probably all about the pseudomonas, but too tired to think straight. Learning as I go.

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@crepass

Yes, I had a bad case right before COVID started and was put on 10 days of cipro which helped and did not appear in cultures again til last week. So ID md has put me back on same for 10 days. 4 days in, feeling better. The 3%saline nebs, done faithfully throughout This past year and a half didn’t touch it. June exacerbation was probably all about the pseudomonas, but too tired to think straight. Learning as I go.

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That's the way of it with bronchiectasis – just when you think you have one thing beat, up pops another.
Hope you're beginning to feel better. Cipro neve touched my pseudomonas, levaquin might have done a little. It took 2 rounds of tobramycin to knock it out in 2018.
Sue

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Thanks for sharing Sue, I’m catching up on back posts. It helps a lot for my self-education.

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Sue, for some time I’ve realized that my bronchiecstasis/MAC is less severe than what you and several others on the Forum contend with . For example, I don’t experience my lungs as “hurting.” I’ve never taken the “big three.” I just cough more than most people, and I bring up a good deal of mucus. Adding 7% saline to the regimen effectively ended periodic feverish flare-ups.

Along with a few others, you form the “backbone of the Forum. I don’t think it’s hyperbolic to say your contributions are a treasure. To wit: your response to Crepass above. Don

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@thumperguy

Sue, for some time I’ve realized that my bronchiecstasis/MAC is less severe than what you and several others on the Forum contend with . For example, I don’t experience my lungs as “hurting.” I’ve never taken the “big three.” I just cough more than most people, and I bring up a good deal of mucus. Adding 7% saline to the regimen effectively ended periodic feverish flare-ups.

Along with a few others, you form the “backbone of the Forum. I don’t think it’s hyperbolic to say your contributions are a treasure. To wit: your response to Crepass above. Don

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Actually Don, my case is called moderate. It just acts up a bit more because it shares my lungs with asthma and allergies. My daughters insist the "hurt" is sore chest muscles from coughing, but in my opinion when it hurts to take a deep breath, I'm allowed to blame my lungs.

I really think 7% saline has been a game changer for several of us.

Have a good weekend.
Sue

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The nebs work but the ability of the bronchodilator to penetrate deeply is lessened when the airways are physically blocked with mucous. Bronchodilators relax the muscles on the outside of the airway and the steroids decrease inflammation inside the airways. That is why you started feeling so much better when you took the steroids. Once the swelling inside the airways is less mucous can be expelled easier.

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Sue, you have just written my own recent experience. I got lax with the nebbing of 7% saline and took a break from doing it. Bad idea! I developed a cough because I had contracted aspergillus infection, lower O2 levels, they would drop scary low when I walked, and had zero energy. I went back on my tobramycin 3 week ago and nebbing my saline religiously. Cough is gone, oxygen levels back up, energy levels climbing. I have learned my lesson to not let my guard down again.

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@sueinmn

That's the way of it with bronchiectasis – just when you think you have one thing beat, up pops another.
Hope you're beginning to feel better. Cipro neve touched my pseudomonas, levaquin might have done a little. It took 2 rounds of tobramycin to knock it out in 2018.
Sue

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Toby is what knocked out my pseudomonas also. Good stuff if you can tolerate it.

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@windwalker

Sue, you have just written my own recent experience. I got lax with the nebbing of 7% saline and took a break from doing it. Bad idea! I developed a cough because I had contracted aspergillus infection, lower O2 levels, they would drop scary low when I walked, and had zero energy. I went back on my tobramycin 3 week ago and nebbing my saline religiously. Cough is gone, oxygen levels back up, energy levels climbing. I have learned my lesson to not let my guard down again.

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Seems no matter how long we're working at this, we do forget and get lazy…now to keep me clear until the pulmonologist can see me in August she is asking me to neb the 7% saline 3 times a day! Talk about feeling a-salt-ed.
Sue

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@crepass

Yes, I had a bad case right before COVID started and was put on 10 days of cipro which helped and did not appear in cultures again til last week. So ID md has put me back on same for 10 days. 4 days in, feeling better. The 3%saline nebs, done faithfully throughout This past year and a half didn’t touch it. June exacerbation was probably all about the pseudomonas, but too tired to think straight. Learning as I go.

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Hello @crepass. A short round of antibiotics for those with bronchiectatsis is usually not a good solution. If that is your condition, it is ongoing and usually progressive. Because of this, opportunistic organisms will always be a threat. My dr at Mayo had me on the cipro for 10 days every other month indefinitely. The organisms we catch are tough and short rounds of antibiotics don't cut it. I tested negative for mac after one year on that regimen. I have not had not tested positive for mac since 2014. I did, however catch pseudomonas in 2016, and it was knocked out in a month after nebbing tobramycin. I was kept on that med for three more yrs. because these 'bugs' we catch can appear to be gone, but in fact were only knocked down to an undetectable level. Then, they rear back.

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