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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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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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1 Reaction@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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1 ReactionHello 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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3 ReactionsHi, 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
@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
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.
Hi Toni,
If your doctor told you that 'it couldn't be the meds' causing your tinnitus, I would look for another doctor, ASAP. Azithromycin and Clarithromycin are sister drugs that are in the macrolide family. Hearing loss and tinnitus are a KNOWN and common side effect of these macrolides. Link below to the National Jewish video discussing NTM treatments and management of side effects. You may want to educate your doctor by forwarding them this link, too 😉
I was on the Big 3 for 6 months but I was taken off azythromycin the same day that I woke up with tinnitus (and what turned out to be hearing loss). The tinnitus has never gone away and my hearing never recovered.
Sue-
I have read most of the comments above, again, regarding nebulizing with saline, specifically the 7% but still not sure of the answer related to nebulizing with 7% saline. I have the 7%.
I thought nebulizing with 7% is for loosening the mucus plugs in hopes of getting them up and out with the air way clearance techniques. done either during nebulizing or afterwards.
I thought that getting the mucus plugs up and out helps get the MAI/MAC and/or the MAI/MAC count down.....not that the saline kills the MAI/MAC.
I did not think that the 7% saline does anything more than loosening the mucus to help get it up and out.
Is my understanding incorrect?
Have you seen approved studies that show that the 7% saline does more than loosening the plugs/mucus, like kill the MAI/MAC????
Barbara
Yes Barbara, 7% saline does more than loosen mucus. Here is just one study showing that 7% saline actually suppresses the growth of mycobacteria.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/
There are a few others, but this is the most concise. The results have been replicated, both in petri dishes and in patients.
It has been quite a game-changer for someone like me. Antibiotics were able to knock down, but not knock out, MAC. In early years of MAC, it would have been typical for me to need treatment again within 2-3 years, but using daily airway clearance and 7% saline, I have stayed healthy for over 4 years now.
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