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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 use the nebulizer daily, sometimes twice a day, and I literally could not live without it. I use the albuterol solution, and recently added saline solution immediately following if I am especially congested. The albuterol loosens the phlegm and the saline brings it up. It gives me a cough-free good nights sleep! I have COPD, Bronchiectasis, AND MAC disease. The nebulizer vastly improves my quality of life!
Rita, in your situation I’d be tempted to try combining a vial each of 7 and 0.09 strength. Don
My dr said not to buy it online because there's no assurance that it is as sterile as it needs to be. It's inexpensive with a goodrx coupon.
If you can tolerate 7%, I think we all agree that it's the best choice.
I order my 7% saline online as well. I order the same brand in the same packaging that I bought from the outpatient pharmacy at a local hospital.
It is cheaper online than it was at the hospital but not dispensed by a pharmacist so I don’t get an official receipt to claim it with insurance company (useful when I’ve maxed out insurance).
@rits I'm with @kathyhg - I get the same vials in the same packaging online as at the pharmacy. This is important to me because the Walgreens near my Texas home claims not to be able to get 7% saline - even though the Walgreens in Minnesota gets it for me all the time. So if I miscalculate and run out while there, I need to go online and get some. It comes through a med supplier, not off eBay - don't think I would chance that.
Sue
That's great Sue. I'm glad that you can get it. However, I would send a complaint to Walgreens corporate. Your local pharmacy can order it or get it from another Walgreens. Shame on them! When my dr sent the .9% prescription to Walgreens, they sent me an email saying it was out of stock and they would order it. I wanted to know how long it would take because there are many other pharmacies that are part of goodrx and I didn't want to wait for weeks. I only use Walgreens because it has a drive thru. When I called to find out when I would get it, the prescription tech told me it would be there the next day! And it was. So, two days after I "saw" my dr and she ordered the .9% saline I was at the drive thru picking it up.
Your Walgreens should get it for you if you want to get it there.
Thanks for the suggestion. Unfortunately, even 3% causes me all kinds of bad breathing. I'm surprised and glad that so much is coming up with.9%. I do have some shortness of breath and discomfort after using it but it's bearable.
My picky lungs do not like anything nebulized. They didn't like Arikayce or nebulized levalbuteriol. They don't like wind, perfume, smoke, auto emissions, hot weather, cold weather and a whole bunch of other triggers. My lungs are very difficult!
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1 Reaction@rits The manager explained it was a supply chain issue - they use different warehouses in different parts of the country - my levalbuterol is available immediately in MN, 9 days in TX. I use Walgreens because transferring back and forth between states is seamless. The other places I have tried, not so much. I have a good relationship with their store, so I just deal with it.
Sue
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2 ReactionsHi @auntnanny. Wanted to respond to your post because I have had 4 sputum positive for Pseudomonas A. in the last 14 months.The worse was 3 strains at 4+ in September last year which resulted in a PICC line treatment for two weeks along with 28 days of Tobramycin. I've had another Tobramycin treatment this year. Early this month I tested positive for Stenotrophomonas Maltophilia and am finishing up a round of Minocyclin. Of course, I'll have to submit another sputum for testing to see if treatment worked. My question is WHY??? I did an air quality test of our home and we installed one of those In-Duct air purifier systems last December. I've just sent an email to our local water department about getting my water tested in the house. Because of the virus situation I've only left the house maybe once a week and wear mask and do all the other precautionary measures. My husband does all the shopping and we do the Lysol spray down on everything that comes in. Have you been on Tobrymacin constantly and still test positive? Have you had water testing done? I wear a bite guard at night but scrub it with Peroxil every morning when I take it out and then let it soak in Peroxil till time to use it at bedtime. There has to be something that is causing this repeat occurrences. Look forward to you or other's experiences. God bless us all.
Faye
I'll had house dust to that list. Yikes!!!