Treatment Guidance Please...Bronchiectasis/Asthma/Reflux

Posted by narelled23 @narelled23, Jun 11 7:14pm

I am feeling confused and would welcome your informed input. Diagnosed with Bronchiectasis and more recently with NTM – MAC and now a decrease in lung function by 25% compared to last test 6 years ago.

Although also diagnosed with asthma in 2009 I had never felt the treatment of it (puffers/inhalers and most commonly Symbicort) made any real difference to the issues bothering me - initially my cough. So generally I have been referred to as uncompliant with regard to treatment for it.

Over the last 18 months I have been following a protocol proposed by the Lung Matters (Facebook group) which specifies daily nebulising with salbutimol followed by 7% hypertonic saline (with no steroids or other puffers inhalers).
My recent NTM lung infection diagnosis may have only been picked up since I have been taking more sputum samples during this protocol. I have also recently found that the salbutimol aggravates my GERD/reflux problems and so I have been nebulising with the saline only.

My recent lung function test apparently shows that I have had a drop of 25% in lung function since the previous test 6 years ago. The physio I saw at this recent RPH specialist appointment has recommended I do gentle huff coughing instead of the nebulising (which I feel is not going to be sufficient). The registrar I saw at this specialist appt once again was pushing Symbicort and/or fluticasone and told me that my bronchiectasis was mild and shouldn't be causing the issues I am experiencing (presumably referring to the at least 7oz cup of fluid from my lungs each nebulising). She seems to think it is asthma/post nasal drip.

I am wondering if I should go back on a trial of Symbicort or something similar to see if it makes a difference.

I am worried that my lung function is decreasing so dramatically and also about the volume of mucus I clear each day (since I have not been able to find anyone else who regularly produces so much).

Clinical history:
2008 no HRCT evidence of emphysema/no convincing HRCT evidence of bronchiestases. Mild bronchial wall thickening mostly basal segments. No small airways disease, non calcified pulmonary nodules < 5mm

2009 Tested POSITIVE to histamine provocation for asthma, peak flow variations between 20 - 25% of peak flow, small airways obstruction and increased relative gas transfer, allergic to house dust Mite and cat, cold air and rapid air flow (talking/laughing/exertion), post nasal drainage, Lung nodules < 5mm, THOMPSON

2011 Small component of eosinophilic/inflammation/involvement of eosinophils, inflammation still occurring, but more likely through different mechanism. Low levels nitric oxide.
PETA GRAYSON

2013 CT - mild general peribronchial wall thickening both fields, mild changes of cylindrical bronchiestases mainly lower lobes. Minor areas of scarring no consolidation, minor areas compressive atelectasis, no endobronchial lesion, small nodules - previous granulomatous disease?
a little calcium in aortic artery, prominent oesophagus related to hiatus hernia?
CHRIS DENZ

2017 lung function shows mild airways limitation; chronic cough thought to be result of undertreated asthma, reflux, and post nasal drip.
BENTLEY RESPIRATORY

2023 CT mild interim generalised bilateral central peribronchial wall thickening both fields, and in lower lobes with interim increase in dilated bronchial wall thickening. Scarring noted, was only faint in 2013. Nodules unchanged. No pleural effusions/thickening.

2024 Told 25% decrease in lung function compared to 6 years ago.

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

@sueinmn

@narelled23 Perhaps I am missing something in the diagnostic history above, but I do not see the NTM diagnosis?
Your history reads much like mine - long-term difficult to treat asthma with bronchiectasis. Even after antibiotic treatment, I never felt well until we got the asthma controlled about 2 years ago. It was a concerted effort by the Pulmonologist and me to find the right combination of medication (Symbicort twice a day, Singulair once a day), 7% saline, airway clearance, exercise and deep breathing cycles. That ultimately meant reducing my use of 7% saline nebs to 2-3 times per week, using the Aerobika for airway clearance once a day, and huff coughing or deep-breathing cycles for the other session.
As for the volume of mucus you are experiencing, perhaps it is an irritation response to vigorous airway clearance? I have learned that if I try to clear "every last bit" of mucus from my lungs I produce more and more - to the point where I constantly feel like I am drowning. And unless I am fighting an exacerbation (illness) I do not need 7% saline daily to help clear my lungs. Perhaps there is something to the recommendation from the respiratory therapist?
I understand that the Lung Matters protocol is very specific, but as with every other form of treatment, it is not "the only way" because each one of us is living with a different version of lung disease and our own unique body. In my case, the less rigorous regimen has kept me healthy for over 2 years and counting. Unless I have a respiratory virus, I only have about and ounce of mucus per day - yet my lungs sound clear with a stethoscope.

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Sue, just to clarify...I am barely aware of having asthma ... they had to give me an asthma provocation test to be sure I actually did have asthma at all... and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. So how us asthma a problem for me other than being diagnosed with it. Frustrating!

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@narelled23

Sue, just to clarify...I am barely aware of having asthma ... they had to give me an asthma provocation test to be sure I actually did have asthma at all... and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. So how us asthma a problem for me other than being diagnosed with it. Frustrating!

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You sound like me (years ago) "and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. "
Yup, I had asthma, but I was very active and a runner, so I had well-developed lung capacity that "masked" the asthma except under certain conditions - swimming, high heat & humidity combined, dry very cold air, or whenever I got a cold. My lung capacity was always fine when checked in the doctor's office, until one day when I was tested during a bout of bronchitis.

Hence for many years, probably from early teens to my 40's, the asthma was never treated. After it was diagnosed, I used my albuterol as little as possible because it set off a racing heart and tremors, feelings I detested. I always had allergies, as a child I had significant exposure to asbestos particles, and in my teens and 20's to lots of paper dust. During adolescence and early adulthood, every cold or "bug" turned into an ear or sinus infection, bronchitis or pneumonia.
Again, my conditioning as a runner allowed my to mostly ignore the asthma - until I couldn't. (By the way, the same conditioning allowed me to mostly ignore my increasing hip and back pain - until I couldn't, leading to new hips in my early 50's, but that is another story.) According to my original old-school pulmonologist that was the "perfect storm" that led to developing Bronchiectasis, MAC & Pseudomonas.

I am so glad we always took our daughters' asthma more seriously than my own - perhaps they will be spared the issues I now face.
Sue
PS Looking forward to meeting my newest pulmonologist next month - the "old guard" in our clinic have all retired. I will get a fresh set of eyes looking at my overall lung situation.

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@sueinmn

You sound like me (years ago) "and apart from the occasional temp/exercise induced cough I am unaware of it. I generally don't wheeze. "
Yup, I had asthma, but I was very active and a runner, so I had well-developed lung capacity that "masked" the asthma except under certain conditions - swimming, high heat & humidity combined, dry very cold air, or whenever I got a cold. My lung capacity was always fine when checked in the doctor's office, until one day when I was tested during a bout of bronchitis.

Hence for many years, probably from early teens to my 40's, the asthma was never treated. After it was diagnosed, I used my albuterol as little as possible because it set off a racing heart and tremors, feelings I detested. I always had allergies, as a child I had significant exposure to asbestos particles, and in my teens and 20's to lots of paper dust. During adolescence and early adulthood, every cold or "bug" turned into an ear or sinus infection, bronchitis or pneumonia.
Again, my conditioning as a runner allowed my to mostly ignore the asthma - until I couldn't. (By the way, the same conditioning allowed me to mostly ignore my increasing hip and back pain - until I couldn't, leading to new hips in my early 50's, but that is another story.) According to my original old-school pulmonologist that was the "perfect storm" that led to developing Bronchiectasis, MAC & Pseudomonas.

I am so glad we always took our daughters' asthma more seriously than my own - perhaps they will be spared the issues I now face.
Sue
PS Looking forward to meeting my newest pulmonologist next month - the "old guard" in our clinic have all retired. I will get a fresh set of eyes looking at my overall lung situation.

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Thank you, Sue...there certainly are some similarities.

So despite not being aware of the asthma originally you found great relief when it became well treated?

You sound very fit and motivated.

I wish you well with the "new guard". 😊

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