1. < MAC & Bronchiectasis

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

Posted by rits @rits, May 21, 2020

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)

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

toni1132 | @toni1132 | May 28, 2020
In reply to @windwalker "Hello Faye. I have been on the 28 day tobramycin treatment every other month since 2016...." + (show)
@windwalker

Hello Faye. I have been on the 28 day tobramycin treatment every other month since 2016. I take a 10 day run of ciprofloxacin on the off months. I tested negative for pseudomonas after my first month on it. My dr wanted me to continue on the regimen as a profolaxis (preventative measure). He explained that just because the infection goes away, it doesn't mean the reason you get it in the first place goes away. Pseudomonas is everywhere in the environment, but mostly found on leaves, both living and dead. Do you trim bushes or live where there are a lot of leaves on the ground by any chance?

Jump to this post

Interesting, too. Good grief..... we have to be careful of everything !!!

REPLY
toni1132 | @toni1132 | Jun 3, 2020

My question is: Does everyone on this post nebulize??? I do not. It's never been suggested by either my ID or my pulmonologist. Do you all who do nebulize feel it is that beneficial?? Thank you ! Toni

REPLY
1 reply
irene5 Irene Estes | @irene5 | Jun 3, 2020

@toni1132 Many members nebulize Toni. I think it must be beneficial. Unfortunately, I am not able to - I would if I could. irene5

REPLY
gej53 | @gej53 | Jun 3, 2020

Yes, I do. My pulmonologist asked if I have a productive cough when I first started seeing him and I did not. He first started the nebulizer and then a percussion vest which definitely help clear my lungs. Can't imagine not using either.

REPLY
lorifilipek | @lorifilipek | Jun 3, 2020
In reply to @hayn3705 "I, too, was diagnosed with MAC/Bronchiectasis in mid-March. I started on the 3 antibiotics immediately. I..." + (show)
@hayn3705

I, too, was diagnosed with MAC/Bronchiectasis in mid-March. I started on the 3 antibiotics immediately. I left a message with my pulmonologist several weeks ago (after reading the posts on this site about thumper vests and saline nebulizers etc) asking if there were any other therapies that he would recommend for clearing my lungs and his nurse called back and said “no, only the antibiotics.” So I guess I am wondering why you guys on this site are receiving this treatment but I am not. Is it recommended only in cases of severe vs mild Bronchiectasis?

Jump to this post

@hayn3705 I was diagnosed with mild focal bronchiectasis, nodules, and MAC in 2018 after I coughed up a handful of blood while lap swimming. Other than that, and a morning cough, I have no other symptoms and don't take any antibiotics. My coughing was very non-productive, and I didn't want to have either the bronchiectasis or the MAC to get worse. So, based on what I read here, I decided to try NAC ( 1 or 2 600-mg capsules/day) and nebulizing 7% saline (once a day for two days, then off a day because my prescription was for 60 4ml vials every 3 months). Since I started both, my morning coughing has been much more productive.

REPLY
marilynk | @marilynk | Jun 6, 2020
In reply to @rits "Hi Terri. The two studies were designed for different purposes. As you know, the saline chart..." + (show)
@rits

Hi Terri. The two studies were designed for different purposes. As you know, the saline chart one studies concentrations of saline which allow different mycobacterium to survive. The bacteria along with various concentrations of saline were put in cultures and watched for 4 weeks. At the end of that period, the researchers tested to see which bacteria were alive.The best study for us would have been to test the saline concentrations on animals and then people or at the least on sputum. This study doesn't prove that nebulized saline treatment of any concentration kills bacteria in our lungs. I think most if us believe it does, but this study, which doesn't use patients, doesn't prove that.

The 0.9% v 6% study was conducted on two groups of people who do the same amount of airway clearance and was designed to discover if treatment with one concentration is superior to the other. It was not designed specifically for mycobacterium eradication through saline nebulization. Previous tests had shown that .9% was not effective with respect to cystic fibrosis bronchiectasis patients. This study was to see if the same results would occur with non cystic fibrosis bronchiectasis patients. The results proved that .9% is just as effective for non cf patients as 6%.

For those, like you, who tolerate 7%, this study is not important. For me, it is the best news wrt my airway clearance treatment that I could have.

Stay safe! Rita

Jump to this post

Hi Rita, I’m interested in buying .9% saline Nebulizer vials on line. What exactly do I get or look for? I’ve been trying to use 3% but it’s so strong I can hardly use it. Doc says .9% won’t do me any good but go ahead and try it. There’s lots on Amazon, just not sure what one to order. Thanks.

REPLY
rits | @rits | Jun 6, 2020

My doctors all said the same thing about .9% until Dr McShane sent me the article re the study. Several people here have posted that they order online, but Dr McShane doesn't trust the sterility of the drugs there. She sent a prescription for 100 vials of.9% to my preferred Walgreens. It was $16.15 with a goodrx coupon. Pretty cheap!

REPLY
marilynk | @marilynk | Jun 6, 2020

Thank you for that info.

REPLY
rits | @rits | Jun 7, 2020

Curious. I just noticed the title I used was changed. Who did it?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 7, 2020
In reply to @rits "Curious. I just noticed the title I used was changed. Who did it?" + (show)
@rits

Curious. I just noticed the title I used was changed. Who did it?

Jump to this post

Hi @rits, that was me. I wanted to make sure that the main topic was reflected in the title. This helps people find the great information that is being share about saline solution and nebulizing. It's more explicit that two bits of good news alone, but of course I left that part because it is good news. Would you like it modified in a different way?

REPLY
View MoreView Less
Please sign in or register to post a reply.