Airway clearance techniques

Brian 93 Your statement..."I still cough almost all the time. I'm at the point where I can't even socialize." You are not alone. I am always needing to clear my throat of what I have to assume is mucus (a clear gel like substance and bubbly most times). Sometimes the mucus plugs come up with it. Mucus plugs that apparently can be the breeding grounds for MAC.... meaning the mucus that had been sitting in the bronchi tube "pockets" of the bronchia tube(s) and needs to be cleared out with the various techniques of air way clearance. These plugs have shown up on a C Scan. I also feel I can't be social due to always having to clear out what continuously comes up to my throat and is horribly annoying ......and it being worse after eating or having healthy liquids (water/soup etc.)
It appears that most of what has to be done, from my little bit of time with having this diagnosis of BE, is what we ourselves have to do for ourselves. It appears, and maybe someone can tell me if I am wrong, the pulmonologist or infectious disease doctors only have tests, (PFT, C Scan etc. etc.) some tool recommendations (nebulizing/PEP/Vest) and the antibiotics/medications to help us with MAC/MAI.
Also, I do have a small, hopefully still small, hiatal hernia per Endoscope test. The hiatal hernia also can cause all the symptoms of acid reflux. I do all the diet management suggestions, sleep with a wedge, and no eating 2 and 1/2 to 3 hours before bed. I am not on PPI due to not wanting the side affects and the understanding it really isn't a drug that cures it and it can eventually make the acid reflux worse...a retired NJH Dr. of gastroenterology also came off of it because of that. So, do you know if you have GERD, GORD. or LPR? All cause acid reflux. Not fun having what we have to deal with and not knowing for sure all that is truly wrong...why, why,why...what is causing this????? The big question.
Barbara

Brian, I got mine through a script. It's Azelastine HCL 0.1% 137 mcg per spray. I see it's available on Amazon, "Astepro" brand. Probably other brands too

Thank you.

Do you have asthma, allergies or chronic sinusitis? Those could be a source for the cough.
I had 2 types of coughs before a CT showed lung changes suggestive of MAC and I was sent to a pulmonologist then ENT’s. One cough was horrid and episodic. Like you, I cancelled trips and events because of coughing. That cough seemed to be due to post nasal drip and Azelastine helped tremendously, though it didn’t fully clear the post nasal drainage. I did saline sinus irrigations with the NeilMed bottle (now their Squeezie) until I could get into a frontal sinus specialist months later. He added a steroid to the rinse solution and that helped until a trip last week when my allergies flared. Mayo had also changed the Azelastine to a triple spray with Mometazone, Ipratropium, and diphenhydramine. The Ipratropium really helps and I use it alone midafternoon.

I also had a very little persistent cough, prob related to my asthma, that remained until the cultures done during a bronchoscopy at Mayo were negative for MAC and they then started me on a steroid inhaler. That little cough stopped within 48 hours. Such a relief!

I responded to a couple people with persistent coughs in the Lung Matters group about the meds with steroids that gave me relief from my coughs. My replies were deleted very quickly because steroids aren’t part of their protocol. I’m a retired RN and am quite familiar with the risks of steroids, but my bronchiectasis may be due to the excessive sinus drainage and docs felt it v important to get the post nasal drip under control. Frontal sinus infections also carry high risks and the ENT doc specializing the those, my pulmonologist and I think the benefits of the steroids, for me, currently outweigh the risks. That would likely change if I develop MAC or other pulmonary infections.

I write this (again) because I think Lung Matters has some good info on equipment, cleaning equipment, etc, but I believe it falls short on recognition that people’s needs may vary.

Thank you so much for your reply and sharing your experiences.

Brian, I have been using Azelastine HCL for many years, prescribed by my allergist. It’s an antihistamine rather than a steroid like Flonase. The sinus rinse has been very effective for me. I use a squeeze bottle, not the neti pot. No problem with water in the sinuses, and every doctor I asked recommends it.

Thank you for the suggestion.

A friend uses a steroid inhaler because she says she sounds like a frog in the morning. It is good for inflammation.
However, I think she mentioned every 6 weeks she has to get treated for thrush.

I too use a steroid inhaler twice a day, and have for a long time. There are ways to avoid thrush such as using a spacer to better send the medication directly to the airway, and thoroughly rinsing your mouth after each use - some even suggest brushing your teeth.
Sue

My friend is an MD so she should know to use a spacer!!
Thanks
MG