Pari eflow

[celtsfan]

I know this is used as part of the Aztreonam study, but just
wondering if anyone is using it for any other nebs and if so which
ones?  Also any info on how well it works would be interesting
as well.<br>
<br>
Thanks,<br>
Brian

 

[NoExcuses]

Not approved for CF therapies other than colliston (sp?) and albuterol.

 

[anonymous]

I use the german version of the e-flow for pulmozyme, colistin and hypertonic saline.
Its great, because it is so fast, so small and so calm.

Uli,43,Germany

 

[anonymous]

Troys dr emailed us to say it is VERY NEAR approval for azt.

I know some use it to neb glutathione. Have you seen their website? If you email them, they are super informative and quick to reply. It sounds like it may be a bit confusing to use as their are lots of bacterial issues?

Karen

 

[anonymous]

Thanks for the responses. I have seen the website (aka marketing). It sounds good, so curious for some real unbiased user data. Good news on the azteonam. I had heard it was about a year away, so maybe it will be here sooner.

Brian

 

[john81john]

Hi,

in Europe there is other version called PARI eFlow Rapid (cost circa 700Euro) , I use it for 11 moth. It is possible to nebulise Pulmozyme, Amiloride, Colistin, Hypertonic Saline, TOBI with it. In Czech republic use it now about 50-60 other patients...

Bye John81John/25 CF

 

[NoExcuses]

It's POSSIBLE, but it's not recommended for TOBI or pulmozyme.....

 

[Marjolein]

i wanted to order Colistin from my pharmacy again cause i am almost out of it and they said they can't get that anymore. That there is one national pharmacy that works together with the Colistin manufacterer(sp?) overhere and they supply it to all cfers in the Netherlands.
I contacted my cfnurse so they could write a prescription for the new pharmacy and she said i can get an E-flow too. The manufacterer gives them with the Colistin. And if i'm right it doesn't go through my own insurance company so i can keep my Freeway Freedom for Pulmozyme (and possible HS). Does somebody know if you can nebulise hypertonic saline with the E-flow?

xxx, Marjolein

 

[anonymous]

Yes you can. The only reason why the eflow is "not approved" for everything is that they think too much of the medication might come into your lungs...But you shure can´t have too much saline...

Uli,43,Germany

 

[anonymous]

I was told the e-flow is given FREE with Colistan. And you can inhale colistan, albuterol and hypertonic saline and that is it. Otherwise, the E-Flow I was told is REALLY expensive. So, I do not have it and wish I did if it takes such short time to inhale meds! Bummer!


Jennifer 34 Years old with CF and CFRD

 

[anonymous]

Good news on the aztreonam. I can't inhale tobi now, so this hopefully will benefit me.

 

[anonymous]

How about cleaning/disinfecting the eflow? How easy or hard is this?

 

[anonymous]

I rinse the parts in water after inhaling and put in into a steam disinfector for baby bottles with sterile water afterwards like I did with the parts of the pari master too.
I use it for hypertonic saline ( also with sultanol), collistin and pulmozyme.I don´t do tobi, because i have had no voice when i used it once.

Uli,43,Germany

 

[john81john]

For Uli from Germany, ist da machne Moeglichkeit, wie kann ich Ihnen kontaktieren oder E-mail schreiben, Vielen dank. Ich moechte fragen auf Ihre Erlebnise mit eFlow, Azithromycin usw. Mit freundlichen Gruessen, Hans81Hans@yahoo.de

 

[anonymous]

Hallo Hans/John/Jan

ich habe Dir gerade eine email geschrieben mit Betreff CF.

Uli,43

 

[JazzysMom]

Hey you two no fair........I dont speak or read German! Tho I could get it translated if need me....!

 

[littlepinkstar]

Hmmm, I mentioned this one to my doctor.. and he was an ***** about it. He started bringing up costs and ***** and how much it is, and will insurance pay? I hate it when he always questions me like that, because I feel so be-littled.. I would love to try it someday though. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi Alyssa,

its only yours health! Dont´forget it! Maybe try to find another doctor - specialist...

john81john 25/CF

GOOD LUCK!

 

[Ratatosk]

I hate it when out local doctors bring up costs. Ran into that with RSV shots when our son was a newborn. $3000 shot vs. a hospital stay and potential lung damage, seemed common sense to us. You need to be proactive with your health care and keep on top of things. Is there another CF clinic or specialist in your area you could see instead?

 

[Imogene]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>john81john</b></i>

For Uli from Germany, ist da machne Moeglichkeit, wie kann ich Ihnen kontaktieren oder E-mail schreiben, Vielen dank. Ich moechte fragen auf Ihre Erlebnise mit eFlow, Azithromycin usw. Mit freundlichen Gruessen, Hans81Hans@yahoo.de</end quote></div>

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