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

Posted by rits @rits, Thu, 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)

@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?

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

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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

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

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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.

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@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?

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@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.

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@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

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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.

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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!

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Thank you for that info.

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

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@rits

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

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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?

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@toni1132

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

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Hi Toni. When I first came onto this Connect group hardly anyone was nebulizing the saline, and rarely did drs know to prescribe it. I had read a medical journal from France back in 2010 that stated that the 7% inhaled saline killed back MAC and was proven a good source of treatment. I mentioned it to all of my drs back then, and none had heard of it or would prescribe it. NIH here in this country, also did a study and showed that it took 7% saline to kill mac. This chart from NIH has been posted numerous times on this site so that patients could present it to their drs. When I first joined this group, hardly anyone was using the saline for lung hygiene. It was a sad, sad, group back then, as most everyone was very sick and had horrible, debilitating symptoms. There was a lot of crying and hand-holding. I harped on the use of the inhaled saline until most everyone that could get on it, did. The climate of this group has definitely changed over the years; our members don't appear to be quite as miserable as they were before, and many have stated that once they started nebulizing the saline; they started to feel much better. I just got back from my Mayo visit last week and I was taken off ALL antibiotics and my dr said that good lung hygiene with the albuterol and 7% saline was the most crucial thing I can be doing. Good lung hygiene is what we ALL should be doing if possible. I know that some on here cannot use the saline, but lung clearance is a must. I hope this helps.

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Great news. You inspire me!

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@windwalker

Hi Toni. When I first came onto this Connect group hardly anyone was nebulizing the saline, and rarely did drs know to prescribe it. I had read a medical journal from France back in 2010 that stated that the 7% inhaled saline killed back MAC and was proven a good source of treatment. I mentioned it to all of my drs back then, and none had heard of it or would prescribe it. NIH here in this country, also did a study and showed that it took 7% saline to kill mac. This chart from NIH has been posted numerous times on this site so that patients could present it to their drs. When I first joined this group, hardly anyone was using the saline for lung hygiene. It was a sad, sad, group back then, as most everyone was very sick and had horrible, debilitating symptoms. There was a lot of crying and hand-holding. I harped on the use of the inhaled saline until most everyone that could get on it, did. The climate of this group has definitely changed over the years; our members don't appear to be quite as miserable as they were before, and many have stated that once they started nebulizing the saline; they started to feel much better. I just got back from my Mayo visit last week and I was taken off ALL antibiotics and my dr said that good lung hygiene with the albuterol and 7% saline was the most crucial thing I can be doing. Good lung hygiene is what we ALL should be doing if possible. I know that some on here cannot use the saline, but lung clearance is a must. I hope this helps.

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@windwalker Terri that is great news. I'm glad you are feeling better. That changes everything when you feel good and have enough energy to enjoy doing things. Good for you for researching and advocating for yourself. I don't know if you saw any of my posts about my dental issues, but apparently the old root canals that had gone bad were causing a lot of phlegm in my lungs and I had this baseline all the time with allergies and asthma added into the mix. When I made the decision and had the teeth extracted for dental implants, my lungs cleared up immediately. That's what made me wonder if I could have had MAC and I saw a pulmonologist at Mayo about it which I didn't. That's another issue that doctors never questioned about how another infection and body inflammation can affect the lungs. I had that phlegm at the time of my first surgery at Mayo for my spine, so it had been going on for awhile even though I didn't have a lot of dental symptoms yet, but my asthma had gotten progressively worse for several years . Root canals are filled with gutta percha which contains cadmium, and these had been done years ago when I was 10 years old because of the trauma of breaking my teeth back then. The first big symptoms were discovered 11 months post op when the infection destroyed some jaw bone. I didn't question it because I thought it was sinus problems because of the allergies until I found a soft spot on the roof of my mouth and a blister on my gums. I had a procedure to clear that infection to save the tooth at the time, but this happened again to another of the teeth that were damaged and I realized this would continue again and again, so I decided to replace the teeth with zirconium biocompatible implants. I had some bone grafting and should get the implants placed later this summer and after months of healing, new teeth next year.

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@windwalker

Hi Toni. When I first came onto this Connect group hardly anyone was nebulizing the saline, and rarely did drs know to prescribe it. I had read a medical journal from France back in 2010 that stated that the 7% inhaled saline killed back MAC and was proven a good source of treatment. I mentioned it to all of my drs back then, and none had heard of it or would prescribe it. NIH here in this country, also did a study and showed that it took 7% saline to kill mac. This chart from NIH has been posted numerous times on this site so that patients could present it to their drs. When I first joined this group, hardly anyone was using the saline for lung hygiene. It was a sad, sad, group back then, as most everyone was very sick and had horrible, debilitating symptoms. There was a lot of crying and hand-holding. I harped on the use of the inhaled saline until most everyone that could get on it, did. The climate of this group has definitely changed over the years; our members don't appear to be quite as miserable as they were before, and many have stated that once they started nebulizing the saline; they started to feel much better. I just got back from my Mayo visit last week and I was taken off ALL antibiotics and my dr said that good lung hygiene with the albuterol and 7% saline was the most crucial thing I can be doing. Good lung hygiene is what we ALL should be doing if possible. I know that some on here cannot use the saline, but lung clearance is a must. I hope this helps.

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Absolutely this helps ! I'm almost 3 years into this game and still am learning. I think I'm being treated by doctors who truly aren't up to snuff. But…. I'm going to look into it. Especially with my ID doctor. When I saw her last month she want a second sputum sample to reaffirm the negative culture result from January. She said, " I know most bronchiectisis patients have a very difficult time producing a sputum culture but I need you to try. Well, if she's aware of that why wouldn't she be prescribling nebulizing to help in the mucus clearance?? Hmmm. I need to approach my doctors about this. Thank you so much for all the invaluable info ! Toni

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@windwalker

Hi Toni. When I first came onto this Connect group hardly anyone was nebulizing the saline, and rarely did drs know to prescribe it. I had read a medical journal from France back in 2010 that stated that the 7% inhaled saline killed back MAC and was proven a good source of treatment. I mentioned it to all of my drs back then, and none had heard of it or would prescribe it. NIH here in this country, also did a study and showed that it took 7% saline to kill mac. This chart from NIH has been posted numerous times on this site so that patients could present it to their drs. When I first joined this group, hardly anyone was using the saline for lung hygiene. It was a sad, sad, group back then, as most everyone was very sick and had horrible, debilitating symptoms. There was a lot of crying and hand-holding. I harped on the use of the inhaled saline until most everyone that could get on it, did. The climate of this group has definitely changed over the years; our members don't appear to be quite as miserable as they were before, and many have stated that once they started nebulizing the saline; they started to feel much better. I just got back from my Mayo visit last week and I was taken off ALL antibiotics and my dr said that good lung hygiene with the albuterol and 7% saline was the most crucial thing I can be doing. Good lung hygiene is what we ALL should be doing if possible. I know that some on here cannot use the saline, but lung clearance is a must. I hope this helps.

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I had a telemedical with my pulmanolgist last week and the first thing I asked him was why hasn't any of my doctors recommended nebulizing?? He said I didn't need nebulizing because I use the albutoral inhaler and if I use that in conjunction with my Smart Vest, it's the same thing. So, I don't need to add nebulizing. Additionally, I asked him about developing tinnitus from the Azithrymicin and he said, Noooo, usually people your age ( 72 ) develop some hearing issues. I just said, "Oh." Does anyone have any comments??? Thank you, Toni

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