PARI eFlow

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anonymous

New member
Is this product available in the USA? It sounds like a wonderful device, but I can't find anywhere that says it's in the States. Does anyone have some info on where to get one and also and feedback on the device itself would be great.

Thanks ~ Dina
Mother of 4yr old son w/cf
 
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anonymous

New member
It was mentioned on the latest webcast on CFF.org -2005 conference highlights. Sounds like it is going to be great! Anyone know if it can be used with all nebs or just the one it was designed for? (can't remember the name of the one it was designed for)
 
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anonymous

New member
We use the e-Flow and it is great. It is expensive with a price around $2000, but it is nice to get nebs done in 4 minutes. Definately a great device. It has only been FDA approved with some meds. I don't think it has been approved for TOBI yet.
 
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anonymous

New member
Where did you purchase the eflow and what country do you live in? Did you need a prescription? What drugs does your child use it for?
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
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anonymous

New member
We live in the US and received our e-Flow from IV solutions. My son was on compounded tobramycin for the typical 28 days. The machine is on loan basically and we will have to return it if he does not need another round of tobramycin. He hasn't needed more yet and the company has not asked for it back yet.

We had a prescription, but I don't see why it could not be purchased. I have heard of others using it for other meds as well (bronchodialators, colistin, etc).
 
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JazzysMom

New member
I have heard this topic brought up before & there had been controversy regarding the affects of meds being administered so quickly. I cant recall which meds supposedly werent suppose to be administered that quickly, but I am assuming its tobi, colistin & pulmozyne. Albeuterol, pulmicort or other bronchial dialators should be ok. Does anyone else remember this controversy?
 
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anonymous

New member
Using the eFlow for Tobi (or for anything else for that matter) is something that really needs a Dr. opinion. There are plenty of drugs prescribed that are not exactly for the condition or dosage or age group that the FDA approved them for.

As I understand it from reading the petition and commentaries submitted to FDA (docket 2004P-0131 available at FDA's website) the basic issue is whether the dosage and availability in the lungs of the medication is going to be at the right level using the eFlow instead of the jet nebulizers that pretty much everything including Tobi went through clinical testing and FDA approval with. Faster delivery and different droplet size via the eFlow calls into question whether the off the shelf Tobi is going to deliver the same dose/availability. Chiron (patent holder on Tobi) argued to FDA that it is different and therefore needs a new clinical testing. CFSource wants to market a different concentration and amount of tobramycin for inhalation for use with the eFlow and claims there's adequate data to show it will work. I'm in no position to judge who is right or not, hence my sentiment that the question needs to go to the treating physicians (and if they haven't got an opinion, they need to talk to their peers and form one)
 
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anonymous

New member
On a side note, I'd contacted Chiron in the past about using the Pari portable nebulizer for tobi and was told absolutely not. I too heard that Tobi and some of the other drugs need to run longer so as to get deeper into the lungs.

There's also some sort of powder form of tobi that is in the testing phase that is more like and inhaler than a nebulizer.
 
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Sunnie

New member
The eflow has to be calibrated for a specific medication. It has been approved, but at the moment it is only being used in drug trials. It should be available for normal use in a couple of months. The eflow itself isn't what is calibrated. There's a little metal piece that fits into the device that is calibrated for the specific medication. So for each medication used in the eflow, there is a different metal piece. Right now calibration for albuterol is being worked on.

As for Tobi, the powdered form is in it's final stage of testing. Then I guess all the information has to be compiled and properly submitted to the FDA. I'm pretty excited about both the eflow and the powdered Tobi. I so want to have more time to be "normal".
 
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anonymous

New member
Just read an article online about a phase III study in Europe giving powdered inhalable Colomycin orphan drug status. Exciting to hear about new drugs coming down the piple!

Liza
 
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anonymous

New member
When you write that you called Chiron regarding the Pari portable nebulizer (the Trek?) did they give you a reason? The Trek is the same concept as the Proneb ultra, which is used with Tobi. Any light you can shed on this is much appreciated.
 
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anonymous

New member
Chiron will always tell you that the only compressor you should use to administer Tobi is the Divilibiss Pulmo-aide as that is the one they used to get all their FDA approvals etc.
 
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anonymous

New member
The "problem" wit the eflow is not, that you get less tobi into your lungs, but possibly too much...Therefore the producer of tobi is afraid to sell less of his product and earn less money...
The eflow is a product from Pari, so if you ask them they will possibly tell you how to get it in the US.

Uli,43,Germany
 
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anonymous

New member
That was what I heard from physiotherapists and doctors here and I would not bet that it is wrong...

Uli,43,Germany
 
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anonymous

New member
Hi,

I use an european version of Pari Eflow rapid, as Uli does. When I wanted to buy Pari Eflow a year ago in USA it was impossible and , yes it was tested for drugs and the delivered doses were in the US version too big...thats what have me written the sale-manager of PARI GmbH, Mosstrasse 3, 823 19 STARNBERG,GERMANY...

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
 
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