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)

I am a huge supporter of nebulizing and my doctor prescribed albuterol prior to nebulizing to open up my airway more. Others on the forum will have more experience with it than I do.

I got tinnitus and hearing loss from azithromycin. They seem to go together, at least they did for me. In fact, I stopped the azithromycin the day my tinnitus started and I didn’t even know I had hearing loss until my next routine hearing test. It’s been 10 months and I still have both. My doctors (Respirologist, ENT, GP) said it was directly a result of the azithromycin. I am 64.

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@kathyhg

I am a huge supporter of nebulizing and my doctor prescribed albuterol prior to nebulizing to open up my airway more. Others on the forum will have more experience with it than I do.

I got tinnitus and hearing loss from azithromycin. They seem to go together, at least they did for me. In fact, I stopped the azithromycin the day my tinnitus started and I didn’t even know I had hearing loss until my next routine hearing test. It’s been 10 months and I still have both. My doctors (Respirologist, ENT, GP) said it was directly a result of the azithromycin. I am 64.

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Thank you so much for your input, Kathy. You know, it made me somewhat angry at his cavalierness. He was just not receptive to my inquiries whatsoever. Your procedure, using the albuturol then nebulizing sounds like a solid method to me. Hmmm. I think I need to think about this. Thank you !!

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I’ve learned so much from this forum and doing my own research. I can tell you that I had the most confident doctor you could imagine who knew very little about Mac (I didn’t know that at the time) and who I left after he refused to send me to an actual Mac specialist. His treatment plan was the Big 3 without any other therapies like nebulizing.

My biggest regret is that I stayed with my original doctor as long as I did. I’ve done better now that I’m off the meds and relying on nebulizing with 7% saline and percussion twice a day. My virus count went down from 3+ After 6 months on the big 3 to 1+ After 10 months of nebulizing and percussion.

My apologies for repeating this on this forum too many times but I can’t more strongly recommend that everyone do their best to educate themselves and be strong advocates for themselves with physicians. And don’t hesitate to push for another opinion if you feel you need it.

Good luck.

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@toni1132 Hi Toni – Hmm…no a rescue inhaler is not at all the same as nebulizing saline. It is meant as a bronchdilator for airway constriction, does not either encourage or thin mucus. My ID doc didn't prescribe nebulized saline, though he did encourage it, mainly because he didn't want to cross over into the pulmonologitst's territroy.
As for tinnitus from azithromycin, refer him to https://www.rxlist.com/zithromax-side-effects-drug-center.htm
In your situation, if possible, I would be seeking someone with more experience treating MAC & bronchiectasis, who is willing to consider information you bring to him, and not just dismiss it. After a little conflict with my original pulmonologist, he fired me! With the help of my primary & ID docs, I found a new one, and she's a keeper.
Are comfortable sharing your general location? You may get helpful recommendations from this group – while National Jewish Health and Mayo are kind of the "gold standard" for treating MAC, many of us have found great docs in our communities.
Sue

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@rits

Saline is part of airway clearance that those of us with bronchiectasis should do 2x daily.

Our disease means that we have abnormal, dilated airways and mucus accumulates in them causing plugs, opacities, nodules, etc. Our bodies send antibodies, enzymes, etc to fight the disease and everything gets caught and bacteria finds these areas a good place to grow. Airway clearance is how we shake this sputum loose and expel it.

There are 3 ways to get this gook out: percussion which is when someone thumps on our backs to shake it loose or a vest which does the thumping. A flutter device like the aerobika which causes vibration in the lungs. And finally saline which is nebulized into the lungs. The saline adds liquid to the sputum and irritated our airways into giving it up so we can cough it out. Some of us use all three methods 2x every day.

Saline comes in different concentrations, i.e., 7%, 6%, 3% and normal saline of 0.9%. Normal saline is the amount we have in our body fluids and is what we get through an iv when we are hospitalized in order to maintain our normal fluids.

The study concludes that for those with non cystic fibrosis bronchiectasis, nebulizing .9% works just as well as the higher concentrations which some if us find too hard to use.

I hope this long explanation helps.

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Rits, your “long” explanation is excellent. Don

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I am also confused. I have MAC and bronchiectasis started the big 3 two months ago. The mild cough that I have is nearly gone and I don't feel as though there is sputum in my lungs to cough up. In fact, I am worried that I will not be able to produce a sputum sample for culture when he orders the follow up test. Should I be asking for nebulizing treatments when I have few symptoms?

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@kayskid I found that nebulising helped me get samples whereas before I couldnt get a sputum sample at all. I went for a test one at the hosp to see if it would work before buying a pari eflow. Good luck.

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@kayskid

I am also confused. I have MAC and bronchiectasis started the big 3 two months ago. The mild cough that I have is nearly gone and I don't feel as though there is sputum in my lungs to cough up. In fact, I am worried that I will not be able to produce a sputum sample for culture when he orders the follow up test. Should I be asking for nebulizing treatments when I have few symptoms?

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Hello Kay. Yes! You should have a nebulizer and get a prescription for 7% sodium chloride. Most drs say to do a nebulized treatment twice a day. It keeps your lungs clear of phlegm, which we know is a breeding ground for mac and other organisms. It also helps to limit mac growth and lesson the awful symptoms of mac infection. A phone call to your dr's office to ask for a prescription should suffice. If you have trouble getting your dr to prescribe it, be sure to ask 'Why?". There is a print-out of a study by NIH that proves that 7% saline is very helpful in managing this disease. In some cases, the 7% saline has shown to eliminate mac. In all of my years on this site, I have seen how many of us on here have improved substantially by using the 7% saline. Will you please get back to me and let me know what your dr says about it?

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@sueinmn

@toni1132 Hi Toni – Hmm…no a rescue inhaler is not at all the same as nebulizing saline. It is meant as a bronchdilator for airway constriction, does not either encourage or thin mucus. My ID doc didn't prescribe nebulized saline, though he did encourage it, mainly because he didn't want to cross over into the pulmonologitst's territroy.
As for tinnitus from azithromycin, refer him to https://www.rxlist.com/zithromax-side-effects-drug-center.htm
In your situation, if possible, I would be seeking someone with more experience treating MAC & bronchiectasis, who is willing to consider information you bring to him, and not just dismiss it. After a little conflict with my original pulmonologist, he fired me! With the help of my primary & ID docs, I found a new one, and she's a keeper.
Are comfortable sharing your general location? You may get helpful recommendations from this group – while National Jewish Health and Mayo are kind of the "gold standard" for treating MAC, many of us have found great docs in our communities.
Sue

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Hi, Sue !! Thank you so much for your response. I'm sorry I had missed it but was just reading through posts and came across it. Well, I didn't think it was the same after reading so much about nebulizing from the posts on this site. So, I'm not comfortable with his dismissiveness. His take was, tho, that the albuterol which is my bornchdilator is the same as what is nebulized…. and as I'm writing this, duh !!! of course it isn't !!!
As for the tinnitus, is the Clrithromycin as effective as the Azithromycin?? Some days it isn't bothersome, others it is. Like today !
I live in Virginia Beach, Virginia. I've thought about reaching out to University of North Carolina. I believe that is the university that has a good program for Bronch/MAC. So, do alot of you travel to National Jewish Health or a Mayo Clinic??
I have 6 more months to go on the Big 3. That will give me 2 years on these meds.
I really do appreciate all the advice and sharing from y'all on this site. It's helped give me a lot of comfort and realization that there's a lot more of this affliction out there than anyone would every know. It's amazing to me! Until one is diagnosed, who ever hears of this!
Thank you, Sue !!!
Toni

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@toni1132

Hi, Sue !! Thank you so much for your response. I'm sorry I had missed it but was just reading through posts and came across it. Well, I didn't think it was the same after reading so much about nebulizing from the posts on this site. So, I'm not comfortable with his dismissiveness. His take was, tho, that the albuterol which is my bornchdilator is the same as what is nebulized…. and as I'm writing this, duh !!! of course it isn't !!!
As for the tinnitus, is the Clrithromycin as effective as the Azithromycin?? Some days it isn't bothersome, others it is. Like today !
I live in Virginia Beach, Virginia. I've thought about reaching out to University of North Carolina. I believe that is the university that has a good program for Bronch/MAC. So, do alot of you travel to National Jewish Health or a Mayo Clinic??
I have 6 more months to go on the Big 3. That will give me 2 years on these meds.
I really do appreciate all the advice and sharing from y'all on this site. It's helped give me a lot of comfort and realization that there's a lot more of this affliction out there than anyone would every know. It's amazing to me! Until one is diagnosed, who ever hears of this!
Thank you, Sue !!!
Toni

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@toni1132 Toni – Yes, I do believe there are good MAC clinicians in your area. Knowing you are in Virginia Beach helps, maybe someone can reach out to you with a suggestion, or maybe you could call Mayo or NJH for a recommendation. While some of us do travel to Mayo or NJH, many have found effective docs near home. My own ID doc in Minnesota works in concert with my pulmonologist and primary in a large group practice. He has reached out to NJH for confirmation when adjusting my treatments.
As for the question of hearing and clarithromycin vs azithromycin, they are the same family of meds, and I believe they have the same risks. However, some people tolerate one better then the other. As I sit here typing this, my ears are buzzing even after 7 months off the meds – but the tinnitus is either getting better most days, or I just don't notice it as much.
Sue

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@toni1132

Hi, Sue !! Thank you so much for your response. I'm sorry I had missed it but was just reading through posts and came across it. Well, I didn't think it was the same after reading so much about nebulizing from the posts on this site. So, I'm not comfortable with his dismissiveness. His take was, tho, that the albuterol which is my bornchdilator is the same as what is nebulized…. and as I'm writing this, duh !!! of course it isn't !!!
As for the tinnitus, is the Clrithromycin as effective as the Azithromycin?? Some days it isn't bothersome, others it is. Like today !
I live in Virginia Beach, Virginia. I've thought about reaching out to University of North Carolina. I believe that is the university that has a good program for Bronch/MAC. So, do alot of you travel to National Jewish Health or a Mayo Clinic??
I have 6 more months to go on the Big 3. That will give me 2 years on these meds.
I really do appreciate all the advice and sharing from y'all on this site. It's helped give me a lot of comfort and realization that there's a lot more of this affliction out there than anyone would every know. It's amazing to me! Until one is diagnosed, who ever hears of this!
Thank you, Sue !!!
Toni

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Hello Toni. It sounds like your dr is somewhat lack-a-daisical. Perhaps he is not current with methods on treating mac. If you are interested in going to Mayo Clinic in Florida, it is a 9 1/2 hr drive for you. I have a neighbor with an AirB&B room in a covid free house if you need a stop-over.

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