rits
@rits
@rits
Posts: 156
Joined: May 09, 2019
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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rits
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Posts: 156
Joined: May 09, 2019
Rita, in your situation I’d be tempted to try combining a vial each of 7 and 0.09 strength. Don
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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Sue, Volunteer Mentor
@sueinmn
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Joined: Aug 12, 2018
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.
@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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fdixon63
@fdixon63
@fdixon63
Posts: 62
Joined: Jul 27, 2019
windwalker…….thank you for the post. It always gives us a little ray of hope. Personally, I'm plagued with pseudomonas as I have been for over a year. Have done the toby for more than a year — still positive for pseudomonas. Going to try it a while longer, I guess. It is discouraging. The constant coughing and phlegm is quite embarrassing and hard to work with if you're going out at all. With the pandemic, I could clear the whole WalMart store in 3 minutes. Ha! Therefore, I don't go in, of course. Thanks again for all you do.
Hi @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
fdixon63
@fdixon63
@fdixon63
Posts: 62
Joined: Jul 27, 2019
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!
I'll had house dust to that list. Yikes!!!
poodledoc
@poodledoc
@poodledoc
Posts: 68
Joined: Dec 07, 2019
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 have been buying 7% saline from Amazon that is manufactured in Israel. Should I be concerned about purity? Is there a place in USA that I can get it without an Rx?
Sue, Volunteer Mentor
@sueinmn
@sueinmn
Posts: 989
Joined: Aug 12, 2018
I have been buying 7% saline from Amazon that is manufactured in Israel. Should I be concerned about purity? Is there a place in USA that I can get it without an Rx?
@poodledoc I wouldn't be concerned. Most of the meds we use come from overseas. Israel is a modern country with a good medical system.
Sue
rits
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Posts: 156
Joined: May 09, 2019
@poodledoc I wouldn't be concerned. Most of the meds we use come from overseas. Israel is a modern country with a good medical system.
Sue
I agree with Sue.
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lorifilipek
@lorifilipek
@lorifilipek
Posts: 60
Joined: Sep 16, 2018
I have been buying 7% saline from Amazon that is manufactured in Israel. Should I be concerned about purity? Is there a place in USA that I can get it without an Rx?
@poodledoc The only 7% saline I could find on Amazon was 24 vials of 5 ml from Naveh (Israel). The price shows up for me as $59.79 plus $7.70 for shipping. That's 5 to 10 times more expensive than what I can get from Krogers or Walgreens, especially if I use Goodrx. Won't your doctor give you a prescription if you show them the articles Terri posted? After I showed them to my GP and explained about this Mayo forum, she immediately wrote an Rx.
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poodledoc
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Joined: Dec 07, 2019
@poodledoc The only 7% saline I could find on Amazon was 24 vials of 5 ml from Naveh (Israel). The price shows up for me as $59.79 plus $7.70 for shipping. That's 5 to 10 times more expensive than what I can get from Krogers or Walgreens, especially if I use Goodrx. Won't your doctor give you a prescription if you show them the articles Terri posted? After I showed them to my GP and explained about this Mayo forum, she immediately wrote an Rx.
Thanks Lori, I will see my pulmonologist in 2 weeks for another CT scan and results of culture. I will ask him for an Rx. I have been using that 7% saline from Israel. Back in Feb it was only $29 for the same thing that is $67 now. I am definitely doing better since starting the saline.
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Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4044
Joined: Nov 18, 2016
Hi @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
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?
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4044
Joined: Nov 18, 2016
windwalker…….thank you for the post. It always gives us a little ray of hope. Personally, I'm plagued with pseudomonas as I have been for over a year. Have done the toby for more than a year — still positive for pseudomonas. Going to try it a while longer, I guess. It is discouraging. The constant coughing and phlegm is quite embarrassing and hard to work with if you're going out at all. With the pandemic, I could clear the whole WalMart store in 3 minutes. Ha! Therefore, I don't go in, of course. Thanks again for all you do.
Hi Jan! Have you been on an antibiotic on the 'off' months of taking toby?
Terri Martin, Volunteer Mentor
@windwalker
@windwalker
Posts: 4044
Joined: Nov 18, 2016
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?
Hi there. There are a surprising amount of drs who do not know about using nebulized saline in addition to antibiotics. You can tell your dr that Mayo pulmonolgists recommend it. I say this because Mayo drs are rightfully held in high esteem by most physicians. I can almost guarantee that Mayo drs see and treat hundreds more mac patients than your dr. Do you know what your dr's expertise is in dealing with mac/bronchiectatsis? That is an important question to ask your dr. What is his/her experience in treating mac. Did you see the NIH link I recently posted about the saline?
fdixon63
@fdixon63
@fdixon63
Posts: 62
Joined: Jul 27, 2019
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?
Hi Terri. Thanks for the input. I had not heard about the connection with leaves and Pseudomonous. We have trees in our backyard but I rarely go out there and if I do I wear a mask (because of pollen, soil etc.) I had gotten rid of my few house plants last year (kept a small one) because of what we know about potting soil. At this point I'm wondering if the Pseudomonous never gets completely cleared up and when antibiotics are stopped it gains momentum again. I commend you for your dedication to your treatment regimen–since it is working. I wonder how many other doctors keep their patients on that treatment for such a long period of time? When you were first diagnosed with Pseudomonous did you never have a break to see if you cleared it up or was this treatment started from the very beginning? What has this constant antibiotic treatment done to you otherwise? Seems like it would be awfully harsh over time. Thanks again.
toni1132
@toni1132
@toni1132
Posts: 71
Joined: Jan 15, 2020
Hi there. There are a surprising amount of drs who do not know about using nebulized saline in addition to antibiotics. You can tell your dr that Mayo pulmonolgists recommend it. I say this because Mayo drs are rightfully held in high esteem by most physicians. I can almost guarantee that Mayo drs see and treat hundreds more mac patients than your dr. Do you know what your dr's expertise is in dealing with mac/bronchiectatsis? That is an important question to ask your dr. What is his/her experience in treating mac. Did you see the NIH link I recently posted about the saline?
I didn't see it, but I will look for it. I find it interesting that no one has mentioned this. I think I'll ask my pulmonolgist about it. This bothers me.
@rits
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.