Two bits of good news!! (and nebulizing with saline)

Posted by rits @rits, May 21 12:13pm

Hi Everyone. I had a telemedicine appointment last Friday with the wonderful (I LOVE her) Dr. McShane who is practicing in Tyler, Texas. I have really good news to share. First is mine alone. I am off antibiotics following successful treatment for 14 months with Azithromycin and ethambutol and 4 months on Arikayce. Yay!

The second wonderful news is a shocker and applies to everyone who does airway clearance. Not too long ago, I pontificated here in response to a post by Thumper that nebulizing with .9% saline is a waste of time because it is normal saline and would not do anything. I said that we need to use 7% if we can and 3 % if 7 is too harsh. Well, Dr McShane told me that .9% is just as good and she sent me a copy of a study which proves it. I have attached the study here. It is from Australia and compares airway clearance for patients using 6% to those using .9% for one year. There was no difference!!! Both worked equally well as far as preventing exacerbations, effect on bacteria, etc.

Of course if you are doing well on 7% or 3%, this probably doesn’t matter to you. But for me, it is earth shattering. I started on .9% last night and it is much more comfortablefor me. You can read the study for yourself. Last week, I was despondent believing that, although I would be stopping the antibiotics, I would have to suffer the effects of hyperytonic saline 2x a day for the rest of my life. I had horrible shortness of breath and struggled to function for at least an hour after each clearance treatment. No more! This is such good news!

I hope everyone has a fantastic day!

Rita

Shared files

Hypertonic Saline versus normal saline in Bronchiectasis (Hypertonic-Saline-versus-normal-saline-in-Bronchiectasis.pdf)

Hi all, I noticed that the study did not look for MAC or NTM in their patients, only other types of bacteria ("At baseline 60% of the participants in the IS group and 55% in the HTS group had a positive sputum culture for Pseudomonas, Haemophilus, Aspergillus, Staphylococcus aureus or Streptococcus with no significant difference in isolates between groups.") We don't know whether any of the participants had MAC. For those of us with MAC, as well as bronchiectasis, the study @windwalker (Terri) and @alleycatkate (Kate) posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/) suggests that 7% would be necessary to keep MAC under control.

Liked by alleycatkate

REPLY

Hi again, I hadn't read @windwalker Terri's comments on MAC when I posted the comment above. I completely agree with her comments!

REPLY
@lorifilipek

Hi all, I noticed that the study did not look for MAC or NTM in their patients, only other types of bacteria ("At baseline 60% of the participants in the IS group and 55% in the HTS group had a positive sputum culture for Pseudomonas, Haemophilus, Aspergillus, Staphylococcus aureus or Streptococcus with no significant difference in isolates between groups.") We don't know whether any of the participants had MAC. For those of us with MAC, as well as bronchiectasis, the study @windwalker (Terri) and @alleycatkate (Kate) posted (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/) suggests that 7% would be necessary to keep MAC under control.

Jump to this post

Thanks for your reply. The study is only meaningful for those of us who cannot tolerate 7% or, in my case, 3% as well. It tells m, and anyone else with inflamed, delicate airways that using .9% is not a waste of time.

Liked by lorifilipek

REPLY
@rits

Thanks for your reply. The study is only meaningful for those of us who cannot tolerate 7% or, in my case, 3% as well. It tells m, and anyone else with inflamed, delicate airways that using .9% is not a waste of time.

Jump to this post

@rits Thanks for posting the study. It's greatly appreciated! Yes, it's important to see that using .9% is not a waste of time for airway clearance for those who can't tolerate 3 or 7%. (When I posted my comment, I was just worried that those who had MAC and could tolerate 7% might think 0.9% would control the MAC.)

Liked by rits

REPLY
@kathyhg

Another note in support of 7% saline in my nebulizer – I was on the Big 3 for 6 months before I had side effects (tinnitus and hearing loss). I was referred by my GP to a MAC specialist as my respirologist, who had an abundance of confidence but little knowledge of MAC, would not refer me.

The specialist took me off the Big 3 and started me on 7% saline with Aerobika and chest pummeling (my gracious husband was taught to do this). My bacteria count went from 3+ (out of 4) when I stopped the Big 3 to 1 in 4 months and I will do a forced sputum test next time I go in.

Anyway, my point is that the saline has enabled me to stay off medications for 9 months and my overall health has improved so hopefully I can maintain this. Perhaps things would have gone better for me on the medications if I had done both at the same time.

I wouldn’t advocate stopping medications but I completely support the use of saline and other measures to support good health with them (or without, if that works).

I am so thankful to members of this forum for all the helpful information that I’ve received, including learning to do our own research and to be strong advocates for ourselves.

Jump to this post

Hello, folks ! Ok…. I have been reading these posts and educating myself as I go along. Question. Does anyone out there who has MAC and bronchiectasis NOT use saline nebulizing as part of their treatment? I ask because this part of therapy has never been mentioned to me and from what I'm reading, nebulizing seems to be an important addition to plan wellness. Am I missing something?? Also I have been on the BIG3 since Jan 2019. Knock on wood so far I'm tolerating it well. However, I did start to experience some tinnitus ( ringing and whooshing in my left ear). When I mentioned this to my ID doctor's nurse and she "checked with the doctor", I was told " Dr. said that it couldn't be the meds, it must be something else." Yet, I've read over and over MAC patients on these antibiotics do most likely at some time develop tinnitus. I really like this doctor but I'm getting "concerned" that she may not be that learned in MAC/Bonchiectasis. I'd appreciate y'alls input. Thank you !

REPLY

@toni1132 I will comment on the tinnitus first. Go with your gut. Without bring disrespectful towards any physician, what you said about that doctor is probably accurate. Some doctors are way more knowledgeable than others about MAC and Bronchiectasis. As far as nebulizing saline I have found that the majority of the members on this site do very beneficial daily airway clearance in one form or another. Another extremely important thing I have learned is that we need to advocate for ourselves with this disease. irene5

Liked by lorifilipek

REPLY
@toni1132

Hello, folks ! Ok…. I have been reading these posts and educating myself as I go along. Question. Does anyone out there who has MAC and bronchiectasis NOT use saline nebulizing as part of their treatment? I ask because this part of therapy has never been mentioned to me and from what I'm reading, nebulizing seems to be an important addition to plan wellness. Am I missing something?? Also I have been on the BIG3 since Jan 2019. Knock on wood so far I'm tolerating it well. However, I did start to experience some tinnitus ( ringing and whooshing in my left ear). When I mentioned this to my ID doctor's nurse and she "checked with the doctor", I was told " Dr. said that it couldn't be the meds, it must be something else." Yet, I've read over and over MAC patients on these antibiotics do most likely at some time develop tinnitus. I really like this doctor but I'm getting "concerned" that she may not be that learned in MAC/Bonchiectasis. I'd appreciate y'alls input. Thank you !

Jump to this post

Hi Toni1132. In 2017 I was diagnosed with bronchiectasis and MAC avium strain. Once recovered from the “initial” sickness (took 3 months), I met with infectious disease specialist to determine treatment. my system does not tolerate meds well and because I was able to function without feeling poorly, I determined to not start treatment and so far have not started any meds for Mac or bronchiectasis. I do use an over the counter regular saline spray twice a day (found by allergy stuff) recommended by my pulmonologist. Nebulizing is something I can go to, but because of my sensitivities my first option is always the path of least resistance. My Mac has remained pretty stable and is watched carefully with CT scans.

Liked by lorifilipek

REPLY

All I can tell you is that my very confident doctor knew very little about Mac. It’s a fairly rare disease and even seasoned respirologists/pulmonologists aren’t experts in treating Mac and I needed to find someone who was.

That was hard and my respirologist was livid because I got my GP to help me but it was well worth doing.

Good luck

REPLY

Rita, so happy you're doing okay with 0.9 and with support of your Doc too boot. I do remember seeing something on the forum about 7% being more lethal to MAC "microbes." Me, well when I took my first huff of 7% and it sorta "closed down" my throat for a while I was impressed…"this stuff must really kick butt." I've not read the study your Doc steered you to, but I will. I'm glad to hear the 0.9% might be equally effective. If for no other reason that I can buy it w/o Rx from Amazon. Don

REPLY

@toni1132 Hi. You asked about nebulizing with saline solution. Here's my story. After being with 2 previous pulmonologists over a period of 20 years who never mentioned nebulizing at all, I began working with a 3rd pulmonologist 3 years ago who suggested during my 2nd or 3rd visit that I nebulize with 7% saline. I had been diagnosed with bronchiectasis in 1997 and then with MAC in 2008, both diagnoses made by the first pulmonologst. I liked him very much and thought he was pretty well informed about my issues. I had to leave him because of changes in my insurance. The second pulmonologist was young and sweet and poorly informed about my issues. By the time I came to her I knew more about bronchiectasis and MAC than she did. She left her practice to work for an insurance company. This is all to say there are big differences in pulmonologists, differences in knowledge, skill, dedication and opinions. You have to find the one that is right for you. Nothing has made as big a difference in my quality of life as the nebulizing has. This practice works to clear my lungs, ease the strain on my voice, and reduce my coughing. But that's just me. i know from this forum that nebulizing daily with 7% saline solution doesn't work for everybody. Good luck in finding the doctor and the treatment that works for you.

Liked by rits

REPLY

I use the nebulizer daily, sometimes twice a day, and I literally could not live without it. I use the albuterol solution, and recently added saline solution immediately following if I am especially congested. The albuterol loosens the phlegm and the saline brings it up. It gives me a cough-free good nights sleep! I have COPD, Bronchiectasis, AND MAC disease. The nebulizer vastly improves my quality of life!

REPLY

Rita, in your situation I’d be tempted to try combining a vial each of 7 and 0.09 strength. Don

REPLY
@thumperguy

Rita, so happy you're doing okay with 0.9 and with support of your Doc too boot. I do remember seeing something on the forum about 7% being more lethal to MAC "microbes." Me, well when I took my first huff of 7% and it sorta "closed down" my throat for a while I was impressed…"this stuff must really kick butt." I've not read the study your Doc steered you to, but I will. I'm glad to hear the 0.9% might be equally effective. If for no other reason that I can buy it w/o Rx from Amazon. Don

Jump to this post

My dr said not to buy it online because there's no assurance that it is as sterile as it needs to be. It's inexpensive with a goodrx coupon.

If you can tolerate 7%, I think we all agree that it's the best choice.

REPLY

I order my 7% saline online as well. I order the same brand in the same packaging that I bought from the outpatient pharmacy at a local hospital.

It is cheaper online than it was at the hospital but not dispensed by a pharmacist so I don’t get an official receipt to claim it with insurance company (useful when I’ve maxed out insurance).

REPLY
@rits

My dr said not to buy it online because there's no assurance that it is as sterile as it needs to be. It's inexpensive with a goodrx coupon.

If you can tolerate 7%, I think we all agree that it's the best choice.

Jump to this post

@rits I'm with @kathyhg – I get the same vials in the same packaging online as at the pharmacy. This is important to me because the Walgreens near my Texas home claims not to be able to get 7% saline – even though the Walgreens in Minnesota gets it for me all the time. So if I miscalculate and run out while there, I need to go online and get some. It comes through a med supplier, not off eBay – don't think I would chance that.
Sue

REPLY
Please login or register to post a reply.