Treatment Guidance Please...Bronchiectasis/Asthma/Reflux
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.
@narelled23 Thanks for letting me know. I posted 2 links, and they have somehow run together so they don't work. I will ask a moderator to fix this. Here are the links I tried to post.
https://www.mayoclinic.org/diseases-conditions/hiatal-hernia/symptoms-causes/syc-20373379
and this story from the Mayo News Network
https://newsnetwork.mayoclinic.org/discussion/tuesday-q-a-gerd-a-more-severe-form-of-acid-reflux/
I have also done allergy shots which help and then you don't need anti-histamines. I just don't like getting a shot, so I can take an anti-histamine, but I should be doing the injections. I know some anti-histamines can cause drowsiness and dry mouth. You can always look up a specific drug to see what side effects it may have. If you use the word "ototoxic" in your search, you can find out if it causes damage to hearing.
@blm1007blm1007 I think this is a great question to ask your specialist. Everything in medicine is related to other body parts. It's a question of what is the best choice for you given the different medical issues that you have. Would that be easier clearance of mucous from your lungs? Your physician can evaluate the risk. It may be important or not. From my personal experience, if I don't get my lungs clear, it turns into a lung infection so easily, and I don't want get scarring in my lungs from infections. I probably have some due to asthma, etc, but with lungs it is cumulative and doesn't repair itself.
You may be interested in this discussion about Lung clearance in the MAC group. I had forgotten, but I have seen it mentioned here that NAC (N-acetyl cysteine) thins mucous. I have taken that and it does work. That is a natural supplement. It is a precursor to glutathion which is master antioxidant in the body. NAC gets converted to gluathione. This would be something you might want to ask your specialist.
MAC & Bronchiectasis - "Mucociliary Escalator: What is your airway clearance routine?"
https://connect.mayoclinic.org/discussion/mucociliary-escalator/
Jennifer.....thanks, yes as you said "Everything in medicine is related to other body parts." It is so true.
I finally picked up NAC. Overall I feel my mucus had/has been clearing with all I do. I will know more in October with the upcoming CScan if I am doing a good job or not clearning out the mucus/mucus plugs. All indications, up to this point, ae that there is no need to start the antibiotics for MAI or MAC etc. So far as yet, I haven't had an exacerbation with the typical symptoms, symptoms that indicate an exacerbation.
My biggest frustration and life changing chronic problem is the need to constantly clear the throat of the substance that comes up on its own and clings to the back of my throat..... causing me to constantly suck it up further to get it out. An all day health chore.
Per doctors and the tests..... no post nasal drip, no acid reflux......from what I understand are things that are typical of causing this. BUT, infections also can cause it. So, the question is, is it the BE causing it, the hiatal hernia causing it or another type of problem that hasn't been understood.
Oh well, a puzzle to be solved and hopefully it can be solved and further corrected. That would be nice/great!
Thanks,
Barbara
Hi Jennifer
Thank you for the links.
I did do allergy shots some years ago...probably at least 15 years...and it did help to a degree, however I still have symptoms, mainly streaming eyes, running nose. Eye problems could also be partly blepharitis. We persevere.