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Arikayce Lamira for nebbing 7% saline!

Posted by terrimn @terrimn, Mar 18 3:58pm

I've been quietly saving the Pari Lamira heads included with my Arikayce and using the nebulizer for 7% saline as well for
10 months. PARI website states, The Lamira is specialized for drug-device combinations, but for daily saline therapy, Lamira will handle saline effectively if used.
Since my insurance covered my Arikayce and the Pari eflow nebulizer with extra set, I decided against buying a different nebulizer just for saline because it's been working great! I have yet to change out heads, and am diligent with keeping it clean. Sterilizing e/o day in boiling water.
Anyone else cheating the system?
Terri

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terrimn | @terrimn | Mar 20 9:11am

@sueinmn Ha, your comment is a near quote of what my husband said months ago! Insmed and Pari have a business contract with each other and both are in the business of making money obviously. On the Pari site in the FAQ's it states the rapid eflow can be used for hypertonic solution, so my doc said to go ahead and try it. Been nebbing all over the states and Canada for the last 10 months and have zero regrets of saving $900.+ on a separate Pari. Not sure if you saw that I had 26+ of our fellow Mayo Connect friends DM me to "fess up" to using their Arikayce Pari's to neb saline as well and not wanting it out on this public forum.

I returned from snowbirding Palm Beach, FL just in time to enjoy the blizzard last week. Hope you continue to enjoy your stay in south Texas. Born and raised in San Antonio myself, so I can vouch for the fabulous winter weather there!

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terrimn | @terrimn | Mar 20 9:17am
In reply to @szgdds "My doctor told me emphatically that I could not use my lamira (from ARIKAYCE ) with..." + (show)
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My doctor told me emphatically that I could not use my lamira (from ARIKAYCE ) with saline! I secretly tried it….. but I listened to her and only did it once. So now that I’m finished with the ARIKAYCE I see others using the pari rapid-e. I called the company and they said the hand pieces are different and they made one for use with other drugs and saline. I ordered one (it was almost $200) and upon examination it is almost identical to the hand pieces that came with the ARIKAYCE ! Lucky I saved all mine as they sent you a new one every month. I still haven’t told doctors about this! But I use it to nebulize saline almost daily! Blessings to you!

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@szgdds YES! You and I and 26+ of our BE/MAC friends here are doing the same. Cheers to us rulebreakers!

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laureltn | @laureltn | Mar 21 5:26am
In reply to @sueinmn "@swang18 & @szanovec Playing the skeptic here, I wonder if the Lamira handset was developed for..." + (show)
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@swang18 & @szanovec Playing the skeptic here, I wonder if the Lamira handset was developed for proprietary use with Arikayce?
It would be interesting to see the technical specifications for the Lamira and the eFlow.
If I had Lamira handsets that I was done using for Arikayce, I surely would use them for 7% saline.

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@sueinmn My recollection on quick examination was that the Lamira handset is bigger volume, but I didn't do a deep dive. I had planned to buy the smaller handsets if my base hadn't croaked. Now I'm not so patiently waiting for a sale from Nebology, though. 🙂

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Sue, Volunteer Mentor | @sueinmn | Mar 21 7:51am
In reply to @laureltn "@sueinmn My recollection on quick examination was that the Lamira handset is bigger volume, but I..." + (show)
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@sueinmn My recollection on quick examination was that the Lamira handset is bigger volume, but I didn't do a deep dive. I had planned to buy the smaller handsets if my base hadn't croaked. Now I'm not so patiently waiting for a sale from Nebology, though. 🙂

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@laureltn Try putting one in your basket and leaving it there for a day or two - I soon got an email offering a lower price.

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scoop | @scoop | Mar 21 12:16pm
In reply to @laureltn "@sueinmn My recollection on quick examination was that the Lamira handset is bigger volume, but I..." + (show)
Profile picture for laureltn @laureltn

@sueinmn My recollection on quick examination was that the Lamira handset is bigger volume, but I didn't do a deep dive. I had planned to buy the smaller handsets if my base hadn't croaked. Now I'm not so patiently waiting for a sale from Nebology, though. 🙂

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@laureltn Keep an eye out around Easter. They tend to run sales around holidays and that’s only a few weeks away.

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laureltn | @laureltn | Mar 22 6:10am
In reply to @sueinmn "@laureltn Try putting one in your basket and leaving it there for a day or two..." + (show)
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@laureltn Try putting one in your basket and leaving it there for a day or two - I soon got an email offering a lower price.

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@sueinmn I'll give it a shot. Thanks!

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laureltn | @laureltn | Mar 22 6:11am
In reply to @scoop "@laureltn Keep an eye out around Easter. They tend to run sales around holidays and that’s..." + (show)
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@laureltn Keep an eye out around Easter. They tend to run sales around holidays and that’s only a few weeks away.

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@scoop Thanks, Scoop! I was trying to recall the last time they did a deep discount except for Black Friday. I have my Ombra and my Pari Trek so I can wait it out for a good sale.

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becleartoday | @becleartoday | Mar 22 6:46am

In a recent podcast, Dr. Swenson and Drummond advised against using the Lamira for nebulizing saline. It might have to do with particle size. But let me reach out to them and see why they are advising against it and I will get back to you.
Linda Esposito
https://ntmtalk.buzzsprout.com/1357462/episodes/18662016-inhaled-antibiotics-for-bacterial-infections

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terrimn | @terrimn | Mar 22 10:47am

@becleartoday Linda, it does have to do with particle size as nebulizers that the BE community need to be able to get meds/saline to the LOWER lungs. While I am not recommending others do the same ( I'm not a MD, just a retired organic chemist and microbiologist with a PhD in both), in MY situation Pari Rapid for Arikayce does the job wonderfully of getting way, way down in my LOWER lungs to cough out. Due to nebbing saline with my Arikayce Pari, I've been able to complete 3 half marathons and 12 10k in the last 4 months. Wouldn't have happened if my Lamira Pari wasn't clearing my lungs!

Regardless of what the "experts" recommend, those of us who are blessed to clear our lungs completely with our Arikayce Lamira Pari will probably continue to ignore
the experts. Several of us are distance runners and/or hikers, as well as a few speedwalkers. I highly doubt the experts are going to convince us to spend $800-1000. when we have a perfectly successful Pari eflow Rapid already getting good use.

Please let us know what you find out, and may our daily miles continue to be easy-peasey after AC and huffing!
Terri

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becleartoday | @becleartoday | Mar 22 3:51pm
In reply to @terrimn "@becleartoday Linda, it does have to do with particle size as nebulizers that the BE community..." + (show)
Profile picture for terrimn @terrimn

@becleartoday Linda, it does have to do with particle size as nebulizers that the BE community need to be able to get meds/saline to the LOWER lungs. While I am not recommending others do the same ( I'm not a MD, just a retired organic chemist and microbiologist with a PhD in both), in MY situation Pari Rapid for Arikayce does the job wonderfully of getting way, way down in my LOWER lungs to cough out. Due to nebbing saline with my Arikayce Pari, I've been able to complete 3 half marathons and 12 10k in the last 4 months. Wouldn't have happened if my Lamira Pari wasn't clearing my lungs!

Regardless of what the "experts" recommend, those of us who are blessed to clear our lungs completely with our Arikayce Lamira Pari will probably continue to ignore
the experts. Several of us are distance runners and/or hikers, as well as a few speedwalkers. I highly doubt the experts are going to convince us to spend $800-1000. when we have a perfectly successful Pari eflow Rapid already getting good use.

Please let us know what you find out, and may our daily miles continue to be easy-peasey after AC and huffing!
Terri

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@terrimn
I’m happy to hear that the mesh nebulizer is working well for you, and congratulations on completing so many marathons. You are an inspiration!

I was sharing what I heard in a recent NTM Talk podcast. I also know that both National Jewish Health and NYU Langone Health recommend using a traditional jet compressor nebulizer.

That said, I do occasionally use a mesh nebulizer myself, but I don’t rely on it exclusively. A respiratory therapist explained to me that there is a benefit to having particles of slightly varying sizes, as this can help target different areas of the airways.

Dr. Swenson said to use "no more than 3% NaCl concentration and to rinse extensively afterwards." He said it would make a good podcast episode.

As with many aspects of bronchiectasis care, it likely comes down to what works best for each individual and what your care team recommends.

Warm regards,
Linda Esposito

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