Two bits of good news!! (and nebulizing with saline)
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
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Rita, I read the link you shared about the saline. The study did not include mac at all. 7% saline is needed to kill mac. The study you shared was more about saline use helping patients have fewer exacerbations and beating down psuedomonas and another type of organism. It's main point was lung clearance, which we are all onboard for that! Here is the study by NIH. The saline chart is near the end of the article. It lists what saline % will kill what organisms. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ - Here is the link again to that research on 7% saline solution nebulized
@windwalker Thanks for sharing this chart again. It is very important, I think, to continue to differentiate saline for general lung clearance and saline to combat MAC. I still tested positive for MAC when I stopped the meds, but my lung doc supports using 7% saline, if not to cure it, at least to keep it from worsening. Looking forward to a new culture in June (and maybe imaging) to see if it is working for me.
How are you doing these days?
Sue
Thank you Terri! I have been negative since June 2019 and did the extra year of antibiotics minus 2 weeks! Some people need to do 18 months after the first negative but I was lucky to get rid of Mac quickly. We'll be testing my sputum every 3 months and I hope it never comes back.
I was diagnosed with chronic bronchitis (copd) in Oct 2010 and put on inhalers. I had a ct scan soon thereafter which showed bronchiectasis. 7% saline and an acapella were added to my treatment regimen. I think it is important for those diagnosed with bronchiectasis to find a pulmonologist who specializes in or has an interest in bronchiectasis. Because such pulmonologists are hard to find, one who treats copd is the next best choice. We need pulmonologists who are familiar with excess mucus.
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
National Jewish also recommends 7% saline twice a day for our lung disease.. I have read the same info on many sites saying the same thing..I sometimes can’t tolerate the second dose, so I will use 3% instead with my Colistin..thanks for th3 info Terry
Hi Aunt Nanny... I too have pseudomonas and am using Colistin every other month.. Toby made me wheezy and cough a lot... this drug is amazing and has changed my life along with proper airway clearance and 7 percent saline twice a day
@marellen From my understanding, the antibiotics are to treat the NTM, (MAC, MAI, etc.). The saline thru the nebulizer is to assist with lung clearance and in making the lungs less hospitable to various mycobacterium infections. Very important for those of us with bronchiectasis. I think most, if not all, on this forum do some type of lung clearance daily. Hope that helps a bit. Others on here are much more knowledgeable regarding this than I am.
I have not been diagnosed with a MAC/ntm’s yet. He is hoping the vest/albuterol/7%saline is helping.....so far, so good.....but I don’t know what he would do if those infections showed up.
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.