Years and year ago, when I was purporting the benefits of the eFlow (loooooong before Cayston was approved.... check out my posts from 6+ years ago), I had a really hard time finding internet links for the eFlow studies that had been conducted.
Ultimately I located them on random internet pages, which were subsequently taken down. After exploring the CF Services webpage (not sure I remember why.... I really despise that pharmacy), I came across the same studies I had referenced years ago:
https://www.cfservicespharmacy.com/UploadedFiles/ProductsandPrices/PARIeRapidExclusivelybyCFServicesPharmacy/178D0017-eFlowrapid-Medikamentenmessungen-EN.pdf
https://www.cfservicespharmacy.com/UploadedFiles/ProductsandPrices/PARIeRapidExclusivelybyCFServicesPharmacy/178D0035-eFlowrapid-Medikamentenmessungen-im-Vergl-EN.pdf
I still have the pictures of the studies on my blog, but I just found it funny that this information has become a bit more "mainstream."
Happy eFlow-ing.
Showing posts with label eFlow. Show all posts
Showing posts with label eFlow. Show all posts
Wednesday, December 26, 2012
Monday, March 28, 2011
Using Tobra in the eFlow
Pediatr Pulmonol. 2011 Apr;46(4):401-8. doi: 10.1002/ppul.21376. Epub 2010 Dec 30.
Higher Tobramycin concentration and vibrating mesh technology can shorten antibiotic treatment time in cystic fibrosis.
Physiology and Experimental Medicine, Research Institute of Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada. allan.coates@sickkids.ca.
Abstract
Poor adherence to recommended therapy in cystic fibrosis (CF) is often because of the time demands of therapy. Tobramycin (TOBI®, 300 mg at 60 mg/ml) inhaled from the PARI LC PLUS® nebulizer requires about 20 min.
This study determined if equivalent levels of pulmonary deposition could be achieved in shorter time using 1.5 ml of 100 mg/ml tobramycin solution delivered by an investigational eFlow® nebulizer.
Sixteen males with stable CF, 8 children and 8 adults, and an FEV(1) > 45% predicted inhaled both preparations on two occasions with (99m) Tc-DTPA added to the tobramycin. Blood samples were taken for quantification of tobramycin in the serum. The PARI LC PLUS® delivered 45.4 (39.3-51.6), mean and 95% CI, mg to the lungs in 17.0 ± 2.5 min (mean ± SD) with serum levels of 1,089 ± 388 µg/L.
The investigational eFlow® delivered 46.3(40.3-51.7) mg in 4.0 ± 1.0 min with blood levels of 909 ± 458 µg/L. Only the time of delivery was significantly different with P < 0.0001 (paired t-test). Tolerability of the treatment was comparable for both inhalation regimes, but the shorter treatment was preferred by all patients.
These results demonstrate the possibility of delivering equivalent levels of tobramycin much faster into the lungs of CF patients when using eFlow®, a very efficient electronic nebulizer. Pediatr Pulmonol. 2011; 46:401-408. © 2010 Wiley-Liss, Inc.
Copyright © 2010 Wiley-Liss, Inc.Sunday, March 6, 2011
A Comparison of Amount and Speed of Deposition Between the PARI LC STAR(®) Jet Nebulizer and eFlow(®) Nebulizer
J Aerosol Med Pulm Drug Deliv. 2011 Mar 1.
A Comparison of Amount and Speed of Deposition Between the PARI LC STAR(®) Jet Nebulizer and an Investigational eFlow(®) Nebulizer.
Divisions of Nuclear Medicine and Respiratory Medicine, Hospital for Sick Children Research Institute, University of Toronto , Toronto, Canada .
Abstract
Abstract Background: The potency and physical properties of many of the drugs used in the treatment of cystic fibrosis necessitates the use of nebulization, a relatively time-consuming pulmonary delivery method. Newer, faster, and more efficient delivery systems are being proposed.
The purposes of this study was to compare the length of time it took to deliver the equivalent of normal saline nebulized for 10 min in a PARI LC STAR(®) nebulizer to that of an investigational PARI eFlow(®).
Methods: Six normal adults inhaled a 4-mL (36-mg) charge volume of saline from the LC STAR(®) or a 2.5-mL (22.5-mg) charge volume from the investigational eFlow(®). The saline was mixed with (99m)Tc-DTPA to allow two-dimensional imaging. The inhalation was preceded by a xenon equilibration scan to allow more accurate separation of deposition into central and peripheral lung regions.
Results: The investigational eFlow(®) delivered 8.6 ± 1.0 mg, approximately 90% of the lung dose compared to the LC STAR(®), 9.6 ± 1.0 mg, but did in less than half the time (p < 0.02 for both). There were no differences in central versus peripheral distribution for either device. Conclusions: In conclusion the investigational eFlow(®) was both faster and more efficient than the LC STAR(®).
Sunday, July 26, 2009
eFLow / Trio Summary
Hi guys,
I know I have quite a bit of info under this category, so I wanted to sum it up for everyone here in case you don't have time at the moment to read my blabbing.
2. Thousands of Cystic Fibrosis physicians from around the world have prescribed the eFLow to their patients. In Europe, the eFLow is given to Pulmozyme patients for free to use with this medication.
3. In the United States, the eFlow is distributed through SourceCF, a division of PARI. There are 3 pharmacies in the US who distribute under SourceCF, and the pharmacy you should use will depend on where you live. You can call Source CF and they'll tell you which pharmacy to contact. 1-888-335-6946 http://www.sourcecf.com/eflow.htm#get . Through this network, as long as you order your neb antibiotics through them, you get the eFlow FOR FREE. So if you order tobramycin, colistin, etc through them, the eFlow is free. Jackpot. And they will send you replacement "heads/membranes" for free every 3 months.
4. As you'll see from pictures below, the eFlow has plastic parts just like your traditional nebulizers. They can be washed & sterilized in the same way. The only difference with the eFlow is the metal "head" or "membrane."
5. After each medication treatment, rinse the "head" or "membrane" with distilled water (better than tap water because it doesn't have the minerals, etc. to clog the tiny, laser drilled holes). Soak the head in between treatments in alcohol to keep the laser drilled holes open (and to sanitize the head). Boil the head once a week for 10 minutes.
6. That's the only difference in care for the eFLow vs. the traditional compressors/nebulizers. People complain of the eFlow being a pain to clean - I have no idea why. Rinsing in distilled water for 1-2 minutes is pretty simple in my mind.
7. If your eFlow treatments start to slow down, invest in a ultrasonic jewelry cleaner (Foundation Care gave me one for free). http://www.walmart.com/catalog/product.do?product_id=2416364
Leave the head/membrane in the cleaner overnight with distilled water and you should notice improved performance.
8. The eFlow is great because you can use it internationally. I've brought mine to Europe and Asia and because it's battery operated, it always works. For those of you who have been to Europe and Asia with your PARI ProNeb Ultra or other compressor, you konw, you need to get a compressor for that specific continent in order to get the full benefit of your treaetments. What a pain!
9. I think I have posted studies below (look for them), but there have been several studies demonstrating why pulmozyme, tobi and albuterol work in the eFLow.
I know I have quite a bit of info under this category, so I wanted to sum it up for everyone here in case you don't have time at the moment to read my blabbing.
- The eFlow/ Trio was approved for use in the United States in 2004. The FDA says that the eFlow is approved "with patients for whom doctors have prescribed medication for nebulization. The Trio™ is intended for adult and pediatric patients."
2. Thousands of Cystic Fibrosis physicians from around the world have prescribed the eFLow to their patients. In Europe, the eFLow is given to Pulmozyme patients for free to use with this medication.
3. In the United States, the eFlow is distributed through SourceCF, a division of PARI. There are 3 pharmacies in the US who distribute under SourceCF, and the pharmacy you should use will depend on where you live. You can call Source CF and they'll tell you which pharmacy to contact. 1-888-335-6946 http://www.sourcecf.com/eflow.htm#get . Through this network, as long as you order your neb antibiotics through them, you get the eFlow FOR FREE. So if you order tobramycin, colistin, etc through them, the eFlow is free. Jackpot. And they will send you replacement "heads/membranes" for free every 3 months.
4. As you'll see from pictures below, the eFlow has plastic parts just like your traditional nebulizers. They can be washed & sterilized in the same way. The only difference with the eFlow is the metal "head" or "membrane."
5. After each medication treatment, rinse the "head" or "membrane" with distilled water (better than tap water because it doesn't have the minerals, etc. to clog the tiny, laser drilled holes). Soak the head in between treatments in alcohol to keep the laser drilled holes open (and to sanitize the head). Boil the head once a week for 10 minutes.
6. That's the only difference in care for the eFLow vs. the traditional compressors/nebulizers. People complain of the eFlow being a pain to clean - I have no idea why. Rinsing in distilled water for 1-2 minutes is pretty simple in my mind.
7. If your eFlow treatments start to slow down, invest in a ultrasonic jewelry cleaner (Foundation Care gave me one for free). http://www.walmart.com/catalog/product.do?product_id=2416364
Leave the head/membrane in the cleaner overnight with distilled water and you should notice improved performance.
8. The eFlow is great because you can use it internationally. I've brought mine to Europe and Asia and because it's battery operated, it always works. For those of you who have been to Europe and Asia with your PARI ProNeb Ultra or other compressor, you konw, you need to get a compressor for that specific continent in order to get the full benefit of your treaetments. What a pain!
9. I think I have posted studies below (look for them), but there have been several studies demonstrating why pulmozyme, tobi and albuterol work in the eFLow.
Thursday, May 7, 2009
Phase III trial initiated for Tobra in the eFlow
PARI Pharma GmbH received an Orphan Drug Designation (ODD) by the European Commission based on a positive recommendation by the EMEA for inhaled PARI Tobramycin 100 delivered via a customized Investigational eFlow Nebulizer System. This is the second ODD designation that PARI Pharma has received for a product in its proprietary drug pipeline; the first ODD was granted for PARI's inhaled cyclosporine delivered via an eFlow Technology device.
"In clinical trials, we have seen a reduction to one fourth of the inhalation time for PARI Tobramycin 100 compared to TOBI. This is a significant improvement that relates directly to patients' quality of life and ease of use. We believe this will lead to increased adherence to the antibiotic therapy, which is a major challenge for patients with cystic fibrosis. The ODD designation acknowledges the therapeutic value that this delivery concept will offer to patients suffering from cystic fibrosis," said Dr.
PARI Pharma is currently in discussions with multinational pharmaceutical companies to evaluate the efficacy of PARI Tobramycin 100 in a Phase III clinical study and to ultimately make this next-generation treatment available to CF patients worldwide.
The EMEA regulation on orphan medicinal products is designed to promote the development of drugs, which may provide significant benefit to patients suffering from rare diseases identified as "life-threatening or very serious." In addition to potential 10-year EU market exclusivity following marketing approval, orphan drug status provides regulatory assistance and helps accelerate the approval of a drug product via a centralized procedure at reduced regulatory fees.
PARI conducted a Phase I clinical trial as a randomized, open label, crossover, single-dose deposition study of PARI Tobramycin 100 in an Investigational eFlow Nebulizer System versus TOBI/LC PLUS in 16 cystic fibrosis patients, including 8 adults and 8 children. Tobramycin lung deposition for both applications was between 46mg and 47mg. Results from the study will be presented at the European Cystic Fibrosis Conference (ECFC) in
In addition, a Phase II multicenter clinical trial (10 sites) assessed safety and tolerability of PARI Tobramycin 100 (150mg/1.5mL) administered via an Investigational eFlow Nebulizer System in comparison to TOBI (tobramycin 300mg/5mL) delivered via the PARI LC PLUS. 78 patients suffering from cystic fibrosis (36 adults and 42 children) inhaled the study medication for 28 days in a parallel study design.
While key deposition and safety thresholds were maintained, the marked difference was a reduction in the average inhalation time to 4 - 4 1/2 minutes for the PARI Tobramycin 100, down from 16 - 17 minutes for the TOBI therapy, a 73% reduction in treatment time. Results for both formulations show no difference in the ratio of peripheral to central lung deposition. Maximum tobramycin serum levels were below recommended safety thresholds for systemic and inhaled tobramycin applications. Although tobramycin sputum concentrations were slightly higher in the T100 cohort, plasma levels and adverse reaction rates were slightly, but not significantly, lower being regarded as desirable. It appears that, for a twice-daily treatment with PARI Tobramycin 100 delivered via an Investigational eFlow Nebulizer System, approximately 10+ hours of inhalation time per month can be saved compared to TOBI.
About PARI Tobramycin 100
PARI Tobramycin 100 is an investigational proprietary aqueous solution of 150mg tobramycin/1.5mL for inhalation delivery via an optimized Investigational eFlow Nebulizer System, both developed by PARI Pharma, as a potential treatment for patients suffering from bacterial infections caused by Pseudomonas aeruginosa. Patents on both the drug formulation and device were granted in
About the Investigational eFlow Nebulizer System and eFlow Technology
The Investigational eFlow Nebulizer System uses eFlow Technology to enable highly efficient aerosolization of liquid medications via a vibrating, perforated membrane that includes thousands of small holes that produce the aerosol mist. Compared to other nebulization technologies, eFlow Technology produces aerosols with a very high density of active drug, a precisely defined droplet size, and a high proportion of respirable droplets delivered in the shortest possible period of time. Combined with its silent mode of operation, small size (it fits in the palm of your hand), light weight, and battery use, products incorporating eFlow Technology reduce the burden of taking daily, inhaled treatments. The Investigational eFlow Nebulizer System and eFlow Technology are proprietary to PARI Pharma.
PARI Pharma partners with pharmaceutical companies to develop new or improved therapies with eFlow Technology and other advanced delivery platforms. Investigational eFlow Nebulizer Systems are optimized and customized per investigational drug product and are currently in clinical trials for cystic fibrosis, asthma, COPD, respiratory syncytial virus (RSV) infection, and treatments for lung transplant patients among other indications.
About PARI Pharma
PARI Pharma focuses on the development of aerosol delivery devices, drug formulations, and therapies. Based on PARI's 100-year history working with aerosols, PARI Pharma develops treatments for pulmonary and nasal administration optimized with advanced delivery technologies, such as eFlow Technology.
PARI Pharma provides comprehensive inhalation drug development, including nebulizer formulation development and optimization, analytics, aerosol characterization, clinical protocol development, and regulatory guidance, all in compliance with CMC/GCP guidelines. PARI Pharma has several clinical development programs ongoing, either partnered or on its own. PARI Pharma, a PARI Medical Holding company, is located in
Saturday, August 16, 2008
CFRI eFlow info
I still haven't heard from the eFlow people, nor have I heard from my CF Center regarding any info they picked up at the Denver Conference.
However, CFRI apparently had a discussion about the device, and a DVD about the event can be ordered here.....
---------------------------------------------------------------------------------
Offers DVD and Audio CD-Rom
of the eFlow® Presentation
October 25, 2006
(Please circle your choice of Audio CD or DVD)
Topics/Speakers Audio CD-Rom or DVD
It's All About Time- eFlow® Electronic Nebulizer
Terry Lyn Bishop, RCP & Bill Aikins of SourceCF
(62 minutes) Disc 1
Single DVD $3.00
Single CD $1.00
The speakers' presentations are reproduced in DVD-R (DVD minus R) and are compatible with most DVD players. The enclosed DVD can easily be played on PC computers and many newer DVD players. There are other DVD players that have been identified to playback only DVD+R (DVD plus R), DVD+RW or DVD-RW and may not play the DVD-R. Examining the specifications of the owner's manual will help identify these DVD players.
Depending on the number of orders and time needed to complete them, your patience is appreciated.
(Please circle your selections and send in your order with check or credit card information)
Name__________________________________________________________________________
Address_____________________________City____________________State_____Zip Code __________ Telephone________________Email___________________________# of DVDs/CDs ordered ________
Card Account Number_______________________________________ Expiration Date _______________
Amount Submitted $_____________Signature________________________________________________
Please mail to:
Cystic Fibrosis Research, Inc.
2672 Bayshore Pkwy, Suite 520
Mountain View, CA 94043
or fax to 650-404-9981.
Questions? 650-404-9975 cfri@cfri.org
Please note that the pricing for the educational DVDs and CDs are for shipping and handling only.
However, CFRI apparently had a discussion about the device, and a DVD about the event can be ordered here.....
---------------------------------------------------------------------------------
Offers DVD and Audio CD-Rom
of the eFlow® Presentation
October 25, 2006
(Please circle your choice of Audio CD or DVD)
Topics/Speakers Audio CD-Rom or DVD
It's All About Time- eFlow® Electronic Nebulizer
Terry Lyn Bishop, RCP & Bill Aikins of SourceCF
(62 minutes) Disc 1
Single DVD $3.00
Single CD $1.00
The speakers' presentations are reproduced in DVD-R (DVD minus R) and are compatible with most DVD players. The enclosed DVD can easily be played on PC computers and many newer DVD players. There are other DVD players that have been identified to playback only DVD+R (DVD plus R), DVD+RW or DVD-RW and may not play the DVD-R. Examining the specifications of the owner's manual will help identify these DVD players.
Depending on the number of orders and time needed to complete them, your patience is appreciated.
(Please circle your selections and send in your order with check or credit card information)
Name__________________________________________________________________________
Address_____________________________City____________________State_____Zip Code __________ Telephone________________Email___________________________# of DVDs/CDs ordered ________
Card Account Number_______________________________________ Expiration Date _______________
Amount Submitted $_____________Signature________________________________________________
Please mail to:
Cystic Fibrosis Research, Inc.
2672 Bayshore Pkwy, Suite 520
Mountain View, CA 94043
or fax to 650-404-9981.
Questions? 650-404-9975 cfri@cfri.org
Please note that the pricing for the educational DVDs and CDs are for shipping and handling only.
eFlow Diary
You read it right - I just had a decrease in eFlow treatment time.
Colistin was taking me 8.5 minutes... this morning it was 7 minutes on the dot. (remember, colistin takes upwards of 20 minutes with traditional nebs)
Why? Foundation Care sent me a sonic jewelry cleaner from WalMart (free - aren't they great???). I stuck the head in the "La Sonic Supreme" over night and took it out before use this morning.
BAM! shaved 1.5 minutes off my treatment time. I think that's cool as heck. :) :) :) :)
I know more and more of you are jumping on the eFlow bandwagon and getting more of your life back. Thank you for all of your PM's. I love hearing from you all.
-------------------------------------------------------
Well since I last posted about my eFlow times, things haven't changed. At all. Which I found strange.
I expected the times to increase gradually over time. But they haven't. I just had that spike at about 2 weeks when times increased by 2 minutes a treatment.
And I'm embarassed to say this, but I'm doing it for the sake of others reading it - I know now why the times increased.
I flew to New Jersey & back around the time the treatment times increased. And I didn't keep the head in alcohol for the plane ride because I figured I would spill it all over myself or have a hard time keeping it level.
I can't believe I didn't connect the two events. It seems so obvious now. But this is exactly why treatment times increased right at that time, and treatment times haven't increased since then.
Okie doke (I picked that phrase up from Minnesota when I went.... [I] everyone [/I] said it there) . So two things I've learned: one, as has been told to me, if you take care of the eFlow head, treatment times should remain short. And two, taking the head out of the alcohol, even for 6 hours, will affect treatment times.
So I'm going to have to figure out a strategy for TSA not to freak out at me when I go to paris in 2 weeks. And I'll have to figure out a way to keep the darn thing level while flying.
But it will be worth it! I don't have to bring a seperate PARI ProNeb Ultra (American ones don't work in Europe, in case you weren't aware.... even with the outlet converter. I had to buy a whole new compressor specifically for Europe when I was there a year ago) but instead I can bring my small, compact, battery operated eFlow!
I will continue to keep you all posted on my findings. And to those of you who have received push back from your physicians - stay tenacious! Studies are out there. More and more people are using the eFlow. There's no reason why your lungs should be left out.
Afterall, who has more of a interest in your health than you?
-----------------------------------
Well I started Colistin in the eFlow last night.
1st time I've ever used Colistin, eFLow or not, so I didn't know what to expect other than my doc told me my tongue might go numb (I think that's hysterical). But it didn't.
I'm not sure how long Colistin is supposed to take with a traditional neb since I've never do it that way, but it's taking me about 9.5 minutes.
That will be a nice time-saver since I'm leaving for Paris in 2 weeks and of course I will want to maximize my time NOT doing meds while on vacation.
Also I've heard that you need to mix the stuff - I get mine pre-mixed from Foundation Care in little ampules (just like Pulmozyme). It's nice not to have to mix.
I'll keep you all posted on my eFlow adventure....
------------------------------------------
I want to keep you guys in the loop of my eFlow experience.
It's been two weeks that i've had the thing and I've learned quite a bunch.
I was told (corrected) that I need to rinse the "head" in distilled water instead of tap water due to the mineral content of tap water.
Treatment time has increased from 2 minutes to 4.5 with my albuterol + cromolyn sodium. Pulmozyme has gone from 3 minutes to 5. And HTS has gone from 8 minutes to 9.5
So treatment time for all meds but HTS are about what they were with my traditional neb. HTS is still 17 minutes less than with my traditional neb, which is a huge time saver.
Additionally, all those plugs I've been coughing up I'm convinced is from the eFlow's high rate of respirable dose.
Foundation Care is sending me a jewelry cleaner from Walmart that people have had success with for cleanign the head.
The lady at Foundation Care did say that she sees less clogging with eFlows that are used for just colistamethate or tobramycin. Of course, that makes sense.
But I'll continue to report to you all my neb timing, cleaning procedures, etc.
-----------------------------------------
Well I was feeling kind of tight days 2-4 using the eFlow. I was going to wait it out to see if it was the fires out here in LA, seasonal allergies, or some eFlow defect I was going to have to tell everyone about.
Then days 5-8, I've been coughing up mucus plugs. More so than I have the past few years of my life combined. That's why I was tight.... my plugs were working their way up through my larger airways.
I spoke to Mike Schulz over at Foundation Care and he says that more medicine is getting into newer parts of my lungs than with the traditional neb. Not all of his patients cough up plugs but he's heard it before.
He wants me to call him after my PFT's on Friday. He thinks my FEV1 could be higher as well as my 75-25 which has been decreasing quite a bit over the past few years.
I'll keep you guys posted.....
----------------------------------
So the eFlow is working just great - 7 days after I got it.
I'm cleaning & disinfecting it just as I stated - except for the past 3 days I've been in NJ so instead of using the dishwasher I'm using the tupperwear that Foundation Care sent me to clean with soap & water & disinfect with 70% alcohol.
I've been closely monitoring neb times and they're identical to those that I was timing 7 days ago.
I'll keep you all posted on neb times as time goes on....
But the shortened time has been amazing. I'm able to socialize/network more on my biz trip, but still get decent amount of sleep.
The device is tiny so it takes up less space in my luggage which is always fabulous. I carry on all my meds so the smaller the devices the easier for me to lug around the airport.
:)
------------------------------------
Since 130 people read my eFlow II, I didn't want to go back and modify it for fear that those 130 people wouldn't return back & would thus miss the new pics.
Here is that eFlow head for any and all that are interested:
above is the "head"
Here is a pic of the bowl that Foundation Care gave me to soak the head in alcohol after rinsing it in distilled water. The head stays in the bowl until I'm ready to use it for my next treatment.
They don't want you to soak any other part of the whole head device than the metal head itself. I found out from Jem that those prongs don't need to stay out of the alcohol (as in the pic). Foundation Care just instructed me to do that so I could save alcohol. Weird.
Two above pics are the "head"
And finally here are the other parts of the eFlow that I toss into the dishwasher after every use.
Hopefully I'll have a video soon of the eFlow and my old compressor so you can compare the noise. You won't believe the difference!
-------------------------------
Here is a pic of the device compared to the size of my PARI LC Plus and my PARI ProNeb Ultra compressor so you guys can get a feel for the size of the thing. Basically, it's smaller than the compressor & there's no neb so it saves space.
Here is a pic of me puting cromolyn sodium into the eFlow. You take off this dome thing, squeeze in the med, then put the dome part back on :) Also you can see the on/off button which is the black thing on the bottom of the picture.
Now he's a pic of what the "cup" looks like after meds have been put in. It holds 4mL and you can easily see how many mL's you have put in.
Finally, I wanted to show how you can modify the eFlow. You can hold the device all together if you wish. Or you can use this attachment to seperate the mouth piece & med cup from the power source (the saucer shaped blue thing). This is nice because it makes it easier to hold the mouth piece with your teeth & chat with you all!
You can see the blue & white dome better in this pic that you have to remove to put the meds in the device.
-------------------------------
I am posting this right away because I owe so much to this site and I try to do anything I can to give back. Similarly to my trip to see Warwick, it never would have dawned on me to visit him if it weren't for some of you posting last summer about visiting him. So I posted his letter so that all may benefit from my visit.
I didn't even know that the eFlow existed until I came to this site. Fortunately some of you were generous enough to post about the fact that you had it, how you got it, etc. So I am eager to give back as much information to the site as possible so that all may benefit from this huge improvement in technology.
I'll say it until I can't speak anymore - information makes people with CF live longer. In this case, with the eFlow,
eFlow = time savings
time savings = greater compliance
greater compliance = longer life.
----------------------------------------------
It's here. I have the eFlow. And it's fantastic
I did my first treatment in the middle of the day cuz I couldn't wait to use it. I did 2.5mg of cromolyn sodium combined with 0.5mg of albuterol.
I felt like I was doing my 1st dose of hypertonic saline all over again. That stuff was POTENT! wooooo!!!! For the 1st time in years, the albuterol made me jittery.
So, this combination of cromolyn sodium + albuterol used to take me 7 minutes. Now it takes 2 minutes.
Pulmozyme takes 3 minute with the eFlow instead of 5 minutes with my PARI LC Plus + PARI ProNeb Ultra
Hypertonic saline at 5mL, 7% took 27 minutes. Now I'm doing 4mL and it's probably working out to be able 6.5% of HTS which took about 10 minutes.
So what used to take me 39 minutes of nebs is now 15 minutes. That's 24 minutes of time savings, twice a day.
I just had 48 minutes added to my day. Unreal.
The cool thing is how quiet the thing is. You can barely hear it! And it shuts itself off one the medicine is done - so no more guessing if you're truely finished with the neb or not. I can't believe how quiet it is - I'm going to have to take a video so you all can hear.
I used it plugged in, but you can use it with batteries too. Which makes it great for overseas traveling (I had a seperate PARI ProNeb just for Euro travel). And I can use it on a palne too!!!!
The cleaning is not the nightmare people on this site have made it out to be. Probably, as I hypothesized a few months ago, because I do neb cleaning twice a day anyway, so this isn't anything different for me.
Foundation care provided two plastic bowls for me with lids. The "head" (which I'll take a pic of and post) you rinse in distilled water.. Then you put it in alcohol and you leave it there until you're ready to use it again.
The second bowl is for the rest of the parts which are more or less kind of sort of similar to the regular neb parts. They're plastic and some parts are blue soft things. So same difference. Foudnation care instructs us to put one dab of soap they provide in the bowl, shake it up with distilled water for 2 minutes and then let air dry.
I told the guy that I don't think this is sufficient sanitizing so he said I could leave the parts in alcohol after every treatment if i wanted to. Or i could boil. Or i could simply put them in the dishwasher as we've all discussed a million times and ensure that the water gets up above 158 degrees.
Guess what I chose? Dishwasher.
OK, that's all for now. I need to go eat. But I'll post more later and if you have questions, post on here and I'll answer in my next post.
------------------------------------
Well, here are the studies. Cold, hard studies.
They were presented at the NACF. If your doc is telling you that the eFlow hasn't been studied, present these posters, and your physician's ignorance will be corrected.
Simple as that.
----------------------
Low particle size variation is extremely important. There is an ideal particle size where the drug is most useable by the body. If the particle is too small or too large, the drug is unusable and basically it goes to waste. This is why the eFlow requires a smaller amount of drug - because its output of particles are more frequently of a useable size than any other nebulizer. And with a smaller amount of drug, neb time is shorter! It's an exciting technology.
--------------------------------
I don't know about you guys, but with my PARI Pro Neb Ultra as my compressor and my PARI LC Plus nebulizers, I take Albuterol/Intal, Pulmozyme and then Hypertonic Saline 7% which takes me a total of 45 minutes. Then I do the Vest for 30 minutes.
So if I could cut that not even in half, but maybe from 45 minutes to 30, that would give me an extra 15 minutes in the morning and 15 minutes in the evening.
And when I do TOBI, I could do it in the car with my eFlow. My drive time to work varies, but gosh with the eFlow I'm sure it won't be more than 10 minutes.
My device is on order - and I would encourage ALL OF YOU regardless of insurance status to contact www.SourceCF.com. Even if you have Medicaid or crappy HMO/PPO insurance, chances are SourceCF can get one of these for you. I'm serious. You'll never know unless you call....
-----------------------
Hey guys,
I'm investigating purchasing an eFlow. It's been a long journey of information gathering over the past 24 hours.
At first I thought the eFlow wasn't available in the US. Then I found it is available, and has been since Nov 2004, but the FDA has given its approval only for use with CF patients. This is why you don't find the eFlow on the PARI US website.
So I contacted PARI, but they couldn't give me many specifics about the device's use with typical CF meds because they claim that the FDA doesn't allow device manufacturers to discuss the device's use with specific medications.
So I had talked to Foundation Care, one of the 3 pharmacies in the US that is approved to sell the eFlow.
I spoke to Mike Schultz, PharmD this morning.
Here is what I found out (in no specific order):
-The eFlow is $1680 for the unit, $2100 for a year due to cost of replacement parts
-Its covered by a good # of insurances
-What needs to be replaced? Its this metal disk that has 4000 microscopically drilled holes that allows medication to be aerosolized. It needs to be replaced every 90 days
-This metal disk needs to be cleaned after each use (ie if you do albuterol, pulmozyme, HTS in the AM, you need to clean it right after use and let it dry before you use it in the PM)
-The eFlow comes with a cleaning kit & instructions to faciliate cleaning
-Every drug for CF imaginable has been used in the eFlow, including Colistin, TOBI, Tobramycin, HTC, Albuterol, Pulmozyme, etc.
-How is the device tested? In vitro studies. They compare what the PARI LC Plus otuputs with a particular med and then they compare what the eFlow puts out. Turns out the eFlow puts out many more droplets than the PARI LC Plus, so usually less medication can be used with the eFlow.
-There are 650 patients in the US currently using the device
-eFlow will be at the North American CF Conference in Denver in 2 weeks. Call your doc up and tell him/her to attend the eFlow booth to get more information
If you want information mailed to you, email lindsay@foundcare.com
Say that you know someone who spoke with Mike Schulz this morning and you would like more information.
I'll let you guys know what else I find out. I'm going to talk to my boyfriend's dad who is a doc in Austria to see if PARI has any other studies/informatoin out in Europe.
FIGHT ON.
Colistin was taking me 8.5 minutes... this morning it was 7 minutes on the dot. (remember, colistin takes upwards of 20 minutes with traditional nebs)
Why? Foundation Care sent me a sonic jewelry cleaner from WalMart (free - aren't they great???). I stuck the head in the "La Sonic Supreme" over night and took it out before use this morning.
BAM! shaved 1.5 minutes off my treatment time. I think that's cool as heck. :) :) :) :)
I know more and more of you are jumping on the eFlow bandwagon and getting more of your life back. Thank you for all of your PM's. I love hearing from you all.
-------------------------------------------------------
Well since I last posted about my eFlow times, things haven't changed. At all. Which I found strange.
I expected the times to increase gradually over time. But they haven't. I just had that spike at about 2 weeks when times increased by 2 minutes a treatment.
And I'm embarassed to say this, but I'm doing it for the sake of others reading it - I know now why the times increased.
I flew to New Jersey & back around the time the treatment times increased. And I didn't keep the head in alcohol for the plane ride because I figured I would spill it all over myself or have a hard time keeping it level.
I can't believe I didn't connect the two events. It seems so obvious now. But this is exactly why treatment times increased right at that time, and treatment times haven't increased since then.
Okie doke (I picked that phrase up from Minnesota when I went.... [I] everyone [/I] said it there) . So two things I've learned: one, as has been told to me, if you take care of the eFlow head, treatment times should remain short. And two, taking the head out of the alcohol, even for 6 hours, will affect treatment times.
So I'm going to have to figure out a strategy for TSA not to freak out at me when I go to paris in 2 weeks. And I'll have to figure out a way to keep the darn thing level while flying.
But it will be worth it! I don't have to bring a seperate PARI ProNeb Ultra (American ones don't work in Europe, in case you weren't aware.... even with the outlet converter. I had to buy a whole new compressor specifically for Europe when I was there a year ago) but instead I can bring my small, compact, battery operated eFlow!
I will continue to keep you all posted on my findings. And to those of you who have received push back from your physicians - stay tenacious! Studies are out there. More and more people are using the eFlow. There's no reason why your lungs should be left out.
Afterall, who has more of a interest in your health than you?
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Well I started Colistin in the eFlow last night.
1st time I've ever used Colistin, eFLow or not, so I didn't know what to expect other than my doc told me my tongue might go numb (I think that's hysterical). But it didn't.
I'm not sure how long Colistin is supposed to take with a traditional neb since I've never do it that way, but it's taking me about 9.5 minutes.
That will be a nice time-saver since I'm leaving for Paris in 2 weeks and of course I will want to maximize my time NOT doing meds while on vacation.
Also I've heard that you need to mix the stuff - I get mine pre-mixed from Foundation Care in little ampules (just like Pulmozyme). It's nice not to have to mix.
I'll keep you all posted on my eFlow adventure....
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I want to keep you guys in the loop of my eFlow experience.
It's been two weeks that i've had the thing and I've learned quite a bunch.
I was told (corrected) that I need to rinse the "head" in distilled water instead of tap water due to the mineral content of tap water.
Treatment time has increased from 2 minutes to 4.5 with my albuterol + cromolyn sodium. Pulmozyme has gone from 3 minutes to 5. And HTS has gone from 8 minutes to 9.5
So treatment time for all meds but HTS are about what they were with my traditional neb. HTS is still 17 minutes less than with my traditional neb, which is a huge time saver.
Additionally, all those plugs I've been coughing up I'm convinced is from the eFlow's high rate of respirable dose.
Foundation Care is sending me a jewelry cleaner from Walmart that people have had success with for cleanign the head.
The lady at Foundation Care did say that she sees less clogging with eFlows that are used for just colistamethate or tobramycin. Of course, that makes sense.
But I'll continue to report to you all my neb timing, cleaning procedures, etc.
-----------------------------------------
Well I was feeling kind of tight days 2-4 using the eFlow. I was going to wait it out to see if it was the fires out here in LA, seasonal allergies, or some eFlow defect I was going to have to tell everyone about.
Then days 5-8, I've been coughing up mucus plugs. More so than I have the past few years of my life combined. That's why I was tight.... my plugs were working their way up through my larger airways.
I spoke to Mike Schulz over at Foundation Care and he says that more medicine is getting into newer parts of my lungs than with the traditional neb. Not all of his patients cough up plugs but he's heard it before.
He wants me to call him after my PFT's on Friday. He thinks my FEV1 could be higher as well as my 75-25 which has been decreasing quite a bit over the past few years.
I'll keep you guys posted.....
----------------------------------
So the eFlow is working just great - 7 days after I got it.
I'm cleaning & disinfecting it just as I stated - except for the past 3 days I've been in NJ so instead of using the dishwasher I'm using the tupperwear that Foundation Care sent me to clean with soap & water & disinfect with 70% alcohol.
I've been closely monitoring neb times and they're identical to those that I was timing 7 days ago.
I'll keep you all posted on neb times as time goes on....
But the shortened time has been amazing. I'm able to socialize/network more on my biz trip, but still get decent amount of sleep.
The device is tiny so it takes up less space in my luggage which is always fabulous. I carry on all my meds so the smaller the devices the easier for me to lug around the airport.
:)
------------------------------------
Since 130 people read my eFlow II, I didn't want to go back and modify it for fear that those 130 people wouldn't return back & would thus miss the new pics.
Here is that eFlow head for any and all that are interested:
above is the "head"
Here is a pic of the bowl that Foundation Care gave me to soak the head in alcohol after rinsing it in distilled water. The head stays in the bowl until I'm ready to use it for my next treatment.
They don't want you to soak any other part of the whole head device than the metal head itself. I found out from Jem that those prongs don't need to stay out of the alcohol (as in the pic). Foundation Care just instructed me to do that so I could save alcohol. Weird.
Two above pics are the "head"
And finally here are the other parts of the eFlow that I toss into the dishwasher after every use.
Hopefully I'll have a video soon of the eFlow and my old compressor so you can compare the noise. You won't believe the difference!
-------------------------------
Here is a pic of the device compared to the size of my PARI LC Plus and my PARI ProNeb Ultra compressor so you guys can get a feel for the size of the thing. Basically, it's smaller than the compressor & there's no neb so it saves space.
Here is a pic of me puting cromolyn sodium into the eFlow. You take off this dome thing, squeeze in the med, then put the dome part back on :) Also you can see the on/off button which is the black thing on the bottom of the picture.
Now he's a pic of what the "cup" looks like after meds have been put in. It holds 4mL and you can easily see how many mL's you have put in.
Finally, I wanted to show how you can modify the eFlow. You can hold the device all together if you wish. Or you can use this attachment to seperate the mouth piece & med cup from the power source (the saucer shaped blue thing). This is nice because it makes it easier to hold the mouth piece with your teeth & chat with you all!
You can see the blue & white dome better in this pic that you have to remove to put the meds in the device.
-------------------------------
I am posting this right away because I owe so much to this site and I try to do anything I can to give back. Similarly to my trip to see Warwick, it never would have dawned on me to visit him if it weren't for some of you posting last summer about visiting him. So I posted his letter so that all may benefit from my visit.
I didn't even know that the eFlow existed until I came to this site. Fortunately some of you were generous enough to post about the fact that you had it, how you got it, etc. So I am eager to give back as much information to the site as possible so that all may benefit from this huge improvement in technology.
I'll say it until I can't speak anymore - information makes people with CF live longer. In this case, with the eFlow,
eFlow = time savings
time savings = greater compliance
greater compliance = longer life.
----------------------------------------------
It's here. I have the eFlow. And it's fantastic
I did my first treatment in the middle of the day cuz I couldn't wait to use it. I did 2.5mg of cromolyn sodium combined with 0.5mg of albuterol.
I felt like I was doing my 1st dose of hypertonic saline all over again. That stuff was POTENT! wooooo!!!! For the 1st time in years, the albuterol made me jittery.
So, this combination of cromolyn sodium + albuterol used to take me 7 minutes. Now it takes 2 minutes.
Pulmozyme takes 3 minute with the eFlow instead of 5 minutes with my PARI LC Plus + PARI ProNeb Ultra
Hypertonic saline at 5mL, 7% took 27 minutes. Now I'm doing 4mL and it's probably working out to be able 6.5% of HTS which took about 10 minutes.
So what used to take me 39 minutes of nebs is now 15 minutes. That's 24 minutes of time savings, twice a day.
I just had 48 minutes added to my day. Unreal.
The cool thing is how quiet the thing is. You can barely hear it! And it shuts itself off one the medicine is done - so no more guessing if you're truely finished with the neb or not. I can't believe how quiet it is - I'm going to have to take a video so you all can hear.
I used it plugged in, but you can use it with batteries too. Which makes it great for overseas traveling (I had a seperate PARI ProNeb just for Euro travel). And I can use it on a palne too!!!!
The cleaning is not the nightmare people on this site have made it out to be. Probably, as I hypothesized a few months ago, because I do neb cleaning twice a day anyway, so this isn't anything different for me.
Foundation care provided two plastic bowls for me with lids. The "head" (which I'll take a pic of and post) you rinse in distilled water.. Then you put it in alcohol and you leave it there until you're ready to use it again.
The second bowl is for the rest of the parts which are more or less kind of sort of similar to the regular neb parts. They're plastic and some parts are blue soft things. So same difference. Foudnation care instructs us to put one dab of soap they provide in the bowl, shake it up with distilled water for 2 minutes and then let air dry.
I told the guy that I don't think this is sufficient sanitizing so he said I could leave the parts in alcohol after every treatment if i wanted to. Or i could boil. Or i could simply put them in the dishwasher as we've all discussed a million times and ensure that the water gets up above 158 degrees.
Guess what I chose? Dishwasher.
OK, that's all for now. I need to go eat. But I'll post more later and if you have questions, post on here and I'll answer in my next post.
------------------------------------
Well, here are the studies. Cold, hard studies.
They were presented at the NACF. If your doc is telling you that the eFlow hasn't been studied, present these posters, and your physician's ignorance will be corrected.
Simple as that.
----------------------
Low particle size variation is extremely important. There is an ideal particle size where the drug is most useable by the body. If the particle is too small or too large, the drug is unusable and basically it goes to waste. This is why the eFlow requires a smaller amount of drug - because its output of particles are more frequently of a useable size than any other nebulizer. And with a smaller amount of drug, neb time is shorter! It's an exciting technology.
--------------------------------
I don't know about you guys, but with my PARI Pro Neb Ultra as my compressor and my PARI LC Plus nebulizers, I take Albuterol/Intal, Pulmozyme and then Hypertonic Saline 7% which takes me a total of 45 minutes. Then I do the Vest for 30 minutes.
So if I could cut that not even in half, but maybe from 45 minutes to 30, that would give me an extra 15 minutes in the morning and 15 minutes in the evening.
And when I do TOBI, I could do it in the car with my eFlow. My drive time to work varies, but gosh with the eFlow I'm sure it won't be more than 10 minutes.
My device is on order - and I would encourage ALL OF YOU regardless of insurance status to contact www.SourceCF.com. Even if you have Medicaid or crappy HMO/PPO insurance, chances are SourceCF can get one of these for you. I'm serious. You'll never know unless you call....
-----------------------
Hey guys,
I'm investigating purchasing an eFlow. It's been a long journey of information gathering over the past 24 hours.
At first I thought the eFlow wasn't available in the US. Then I found it is available, and has been since Nov 2004, but the FDA has given its approval only for use with CF patients. This is why you don't find the eFlow on the PARI US website.
So I contacted PARI, but they couldn't give me many specifics about the device's use with typical CF meds because they claim that the FDA doesn't allow device manufacturers to discuss the device's use with specific medications.
So I had talked to Foundation Care, one of the 3 pharmacies in the US that is approved to sell the eFlow.
I spoke to Mike Schultz, PharmD this morning.
Here is what I found out (in no specific order):
-The eFlow is $1680 for the unit, $2100 for a year due to cost of replacement parts
-Its covered by a good # of insurances
-What needs to be replaced? Its this metal disk that has 4000 microscopically drilled holes that allows medication to be aerosolized. It needs to be replaced every 90 days
-This metal disk needs to be cleaned after each use (ie if you do albuterol, pulmozyme, HTS in the AM, you need to clean it right after use and let it dry before you use it in the PM)
-The eFlow comes with a cleaning kit & instructions to faciliate cleaning
-Every drug for CF imaginable has been used in the eFlow, including Colistin, TOBI, Tobramycin, HTC, Albuterol, Pulmozyme, etc.
-How is the device tested? In vitro studies. They compare what the PARI LC Plus otuputs with a particular med and then they compare what the eFlow puts out. Turns out the eFlow puts out many more droplets than the PARI LC Plus, so usually less medication can be used with the eFlow.
-There are 650 patients in the US currently using the device
-eFlow will be at the North American CF Conference in Denver in 2 weeks. Call your doc up and tell him/her to attend the eFlow booth to get more information
If you want information mailed to you, email lindsay@foundcare.com
Say that you know someone who spoke with Mike Schulz this morning and you would like more information.
I'll let you guys know what else I find out. I'm going to talk to my boyfriend's dad who is a doc in Austria to see if PARI has any other studies/informatoin out in Europe.
FIGHT ON.
eFLow learnings
I wanted to update you all on more information that I have learned regarding the eFlow.
1. The only medications that require dosage adjustment with the eFlow are antibiotics. This was a big concern for me because if I get my meds through my specific mail order pharmacy (or PBM), it's cheaper than if I go to another pharmacy. Like anyone, I want the cheapest option possible because med costs can add up. My albuterol, my cromolyn sodium, my pulmozyme and my HTS all require [U] no dosage adjustment [/U]. So I can continue to order nebs as usual.
2. Those who have negative side effects from pulmozyme or TOBI/tobramycin may see some of those side effects go away. Hoarse voice/sore throat and stomach aches from TOBI/tobra and/or pulmozyme will most likely go away because the eFlow produces particles that aren't large enough to hang out in the throat. The particles that hang out in the throat are larger than 5-7 microns - which the eFlow produces significantly low volumes of (lower than a traditional neb/compressor). The eFlow's particles are so small that they slip off of the throat and go right into the lungs.
So if you're thinking that your insurance might not cover the eFlow, this could be great prior authorization verbiage (although the specialty pharmacies that provide the eFlow are pratically masters at prior auth's).
3. The size of the particles that the eFlow doesn't just reduce side effects or increase the administration time - the eFlow actually helps the meds go down further in the lungs. And these depths of the lungs are where infection/inflammation typically occure. So, like the Vest, the eFlow isn't just a convenience item. [B] it's an improvement in care [/B]
Mike Schulz from Foundation Care has been incredible in answering all of my questions. He is very wise to realize that the more patients understand what they're doing with their meds & nebs, the more likely they will be compliant and will receive the immense benefits of the product. Wise man. Any of you on the West coast that are considering the eFlow, I would highly highly HIGHLY recommend giving Mike Schulz a call. You will learn so much more than you ever imaged.
1. The only medications that require dosage adjustment with the eFlow are antibiotics. This was a big concern for me because if I get my meds through my specific mail order pharmacy (or PBM), it's cheaper than if I go to another pharmacy. Like anyone, I want the cheapest option possible because med costs can add up. My albuterol, my cromolyn sodium, my pulmozyme and my HTS all require [U] no dosage adjustment [/U]. So I can continue to order nebs as usual.
2. Those who have negative side effects from pulmozyme or TOBI/tobramycin may see some of those side effects go away. Hoarse voice/sore throat and stomach aches from TOBI/tobra and/or pulmozyme will most likely go away because the eFlow produces particles that aren't large enough to hang out in the throat. The particles that hang out in the throat are larger than 5-7 microns - which the eFlow produces significantly low volumes of (lower than a traditional neb/compressor). The eFlow's particles are so small that they slip off of the throat and go right into the lungs.
So if you're thinking that your insurance might not cover the eFlow, this could be great prior authorization verbiage (although the specialty pharmacies that provide the eFlow are pratically masters at prior auth's).
3. The size of the particles that the eFlow doesn't just reduce side effects or increase the administration time - the eFlow actually helps the meds go down further in the lungs. And these depths of the lungs are where infection/inflammation typically occure. So, like the Vest, the eFlow isn't just a convenience item. [B] it's an improvement in care [/B]
Mike Schulz from Foundation Care has been incredible in answering all of my questions. He is very wise to realize that the more patients understand what they're doing with their meds & nebs, the more likely they will be compliant and will receive the immense benefits of the product. Wise man. Any of you on the West coast that are considering the eFlow, I would highly highly HIGHLY recommend giving Mike Schulz a call. You will learn so much more than you ever imaged.
eFlow studies
I realize that some of these studies are hard to read, and I'm sorry for that. I'm doing my best to find better pictures and/or links so you can read them better.
In the mean time, my reco is to right click on the pictures, save them to your desktop, and print them out. As ridiculous as it sounds, if you're passionate enough, use a magnifying glass to read. Yup, I said it. Magnifying glass :)
But you have my word that I'm doing my best to find you all better copies.
****if the pictures don't show up clearly, click on each picture. it will open up in a new window giving you the ability to zoom ***
These are from the German PARI site....
More studies....
In the mean time, my reco is to right click on the pictures, save them to your desktop, and print them out. As ridiculous as it sounds, if you're passionate enough, use a magnifying glass to read. Yup, I said it. Magnifying glass :)
But you have my word that I'm doing my best to find you all better copies.
****if the pictures don't show up clearly, click on each picture. it will open up in a new window giving you the ability to zoom ***
These are from the German PARI site....
More studies....
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