1. < MAC & Bronchiectasis

mucus menifests pattern?

Posted by @ling @wangling, 3 days ago

Hi everyone,
It seems to me that someday I produce much more mucus than normal, then the day after that, I produce much less mucus than normal. Does anyone have a similar experience?
My pulmonologist told me that when I have less mucus out, don't think that you are getting better. I think it is good to remember that. But the fact is someday I do produce much less mucus than normal, especially when I have much more the day before. How could that be possible, since our body continuously produces mucus? I think some environmental reason might cause producing more mucus than normal, but why less than normal I don't understand. When I have less mucus out, I get nervous about it. Your experience is much appreciated.
Ling

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jill6063 | @jill6063 | 1 day ago

Hi friends -

I just had an appointment with Dr. Daley last week and he said Brensocatib would reduce inflammation and exacerbations and reduce the decline of lung function. He said it decreased exacerbations by 20%, which he said is "huge in the medical field" because not all infections are bacterial (and there is nothing we can do about the viral infections). He also said that this improvement was shown over 52 weeks, and that perhaps the longer it goes out the more effective it will be.

I know of Brensocatib and Arikayce - are there are drugs in trial that may be coming our way??

Thanks for any info!

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cyndanna | @cyndanna | 1 day ago
In reply to @scoop "Sometimes we can have both neutrophilic and eosinophilic features. For example, my last sputum test showed..." + (show)
@scoop

Sometimes we can have both neutrophilic and eosinophilic features. For example, my last sputum test showed 4+ polys, which is a high level of neutrophils, suggesting neutrophilic inflammation. BUT, I also have an IgE over 600, suggesting eosinophilic inflammation. If we are willing to try brensocatib it seems like that's the only real way to see if it helps. Fingers crossed!

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Thank you, my eosinophils are typically high. This makes sense.

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lilianna | @lilianna | 1 day ago
In reply to @scoop "Sometimes we can have both neutrophilic and eosinophilic features. For example, my last sputum test showed..." + (show)
@scoop

Sometimes we can have both neutrophilic and eosinophilic features. For example, my last sputum test showed 4+ polys, which is a high level of neutrophils, suggesting neutrophilic inflammation. BUT, I also have an IgE over 600, suggesting eosinophilic inflammation. If we are willing to try brensocatib it seems like that's the only real way to see if it helps. Fingers crossed!

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Scoop good morning. I read Your post And thought how often are yoyr IgE and neutrophils checked. And who does it- a PC or a pulmonologist. Thank you

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1 reply
scoop | @scoop | 1 day ago
In reply to @lilianna "Scoop good morning. I read Your post And thought how often are yoyr IgE and neutrophils..." + (show)
@lilianna

Scoop good morning. I read Your post And thought how often are yoyr IgE and neutrophils checked. And who does it- a PC or a pulmonologist. Thank you

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Neutrophils are collected with a CBC and Differential ordered annually by PCP (or immunologist). IgE was ordered by pulmonary.

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1 reply
lilianna | @lilianna | 1 day ago
In reply to @scoop "Neutrophils are collected with a CBC and Differential ordered annually by PCP (or immunologist). IgE was..." + (show)
@scoop

Neutrophils are collected with a CBC and Differential ordered annually by PCP (or immunologist). IgE was ordered by pulmonary.

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Thank you

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namd | @namd | 22 hours ago

Hi, I am exactly the same. No 2 days are the same. I do airway clearance twice daily - morning and evening. I get very nervous about it all. I get lots of coughing fits during the day but sometimes it is a dry cough. Weather affects me - cold, damp weather is not good. Humidity is even worse! It is such a difficult situation to deal with and the fatigue is awful too! Good luck

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jenis3 | @jenis3 | 13 hours ago
In reply to @blm1007blm1007 "Has anyone wondered if what we eat one day and not the other day might have..." + (show)
@blm1007blm1007

Has anyone wondered if what we eat one day and not the other day might have caused greater mucus than another? I wonder?
I wonder if what we do physically also can change the mucus build up from one day to the next.?
As the doctors have said to us, they don't know for sure, completely, what causes BE and for each of us it may have been different events etc. that caused our BE???? So I wonder if they know, completely, why one day the mucus is worse than another.
What we do know for sure is how hard it is to do all we need to do to clear it and avoid further problems.!
Hope all are doing well today.
Barbara

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I definitely notice a difference in mucus depending on what I eat. I believe allergies (what you're allergic to) creates way more mucus. ive had food allergy testing in the past, and this definitely goes along with that

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2 replies
jenis3 | @jenis3 | 13 hours ago
In reply to @spider109 "Yes scoop let’s hope that is the case for all of us that have alot of..." + (show)
@spider109

Yes scoop let’s hope that is the case for all of us that have alot of secretions, I do understand airway clearance will still have to be done and understandably so to prevent infection primarily. Just FYI looking at my previous several blood draws and my latest sputum culture, Neutrophils always high!!! I know Dr. Daley from NJH I believe he has said 80% of BE patients have high neutrophil counts. 🤞🤞🤞

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what is that?

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bsi15 | @bsi15 | 11 hours ago
In reply to @jenis3 "I definitely notice a difference in mucus depending on what I eat. I believe allergies (what..." + (show)
@jenis3

I definitely notice a difference in mucus depending on what I eat. I believe allergies (what you're allergic to) creates way more mucus. ive had food allergy testing in the past, and this definitely goes along with that

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but what could be the mechanism ?
I may get more mucus from drinking, (I'm not sure)
so, that would be understandable since water is needed for
many things, including mucus-production.
But allergies ?
Could you demonstrate the effect on command ?
For a doctor or a study.

I suspect that mucus-production may also depend on the diaphragm,
how you lay at night.
It can be higher or lower, I don't really know, but I saw it on my CTs.

I can't control my diaphragm .. I read there is diaphragmic breating

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blm1007blm1007 | @blm1007blm1007 | 2 hours ago
In reply to @jenis3 "I definitely notice a difference in mucus depending on what I eat. I believe allergies (what..." + (show)
@jenis3

I definitely notice a difference in mucus depending on what I eat. I believe allergies (what you're allergic to) creates way more mucus. ive had food allergy testing in the past, and this definitely goes along with that

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Everything causes me to have mucus come up to my throat, even water. I had environmental testing and was told I did not need food testing per my answers to all the questions I answered.
Hope they were right. I might think about going back to have the food allergy test.
Barbara

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