Real TOBI & E-flow??

M

mom2lillian

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">Hopign someone out there can help.

Talked to my nurse today, my docs finally gave in to my harassments and are willing to call in an e-flow rx for me <img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0">

BUT . . .

they say I MUST use real TOBI because they dont believe adequate studies done on using tobra to determine what dosage is best/equivalent and I must use the whole thing.

So, has anyone else done this, is it too much TOBI???

Also, does anyoen have the number for CFSource or experience getting an e-lfow from them when you are not getting tobra from them?

I am really excited and hoping to call CFsource and get it all straightened out this week, any guidance you can give woudl eb great. I told my nurse if she got the go ahead from doc I would do all footwork with CFsource since they dont normally use them and I have to keep up my end bargain <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">Hopign someone out there can help.

Talked to my nurse today, my docs finally gave in to my harassments and are willing to call in an e-flow rx for me <img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0">

BUT . . .

they say I MUST use real TOBI because they dont believe adequate studies done on using tobra to determine what dosage is best/equivalent and I must use the whole thing.

So, has anyone else done this, is it too much TOBI???

Also, does anyoen have the number for CFSource or experience getting an e-lfow from them when you are not getting tobra from them?

I am really excited and hoping to call CFsource and get it all straightened out this week, any guidance you can give woudl eb great. I told my nurse if she got the go ahead from doc I would do all footwork with CFsource since they dont normally use them and I have to keep up my end bargain <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">Hopign someone out there can help.

Talked to my nurse today, my docs finally gave in to my harassments and are willing to call in an e-flow rx for me <img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0">

BUT . . .

they say I MUST use real TOBI because they dont believe adequate studies done on using tobra to determine what dosage is best/equivalent and I must use the whole thing.

So, has anyone else done this, is it too much TOBI???

Also, does anyoen have the number for CFSource or experience getting an e-lfow from them when you are not getting tobra from them?

I am really excited and hoping to call CFsource and get it all straightened out this week, any guidance you can give woudl eb great. I told my nurse if she got the go ahead from doc I would do all footwork with CFsource since they dont normally use them and I have to keep up my end bargain <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">Hopign someone out there can help.

Talked to my nurse today, my docs finally gave in to my harassments and are willing to call in an e-flow rx for me <img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0">

BUT . . .

they say I MUST use real TOBI because they dont believe adequate studies done on using tobra to determine what dosage is best/equivalent and I must use the whole thing.

So, has anyone else done this, is it too much TOBI???

Also, does anyoen have the number for CFSource or experience getting an e-lfow from them when you are not getting tobra from them?

I am really excited and hoping to call CFsource and get it all straightened out this week, any guidance you can give woudl eb great. I told my nurse if she got the go ahead from doc I would do all footwork with CFsource since they dont normally use them and I have to keep up my end bargain <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
M

mom2lillian

New member
<img src="i/expressions/face-icon-small-happy.gif" border="0">Hopign someone out there can help.

Talked to my nurse today, my docs finally gave in to my harassments and are willing to call in an e-flow rx for me <img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/face-icon-small-cool.gif" border="0"> <img src="i/expressions/face-icon-small-happy.gif" border="0">

BUT . . .

they say I MUST use real TOBI because they dont believe adequate studies done on using tobra to determine what dosage is best/equivalent and I must use the whole thing.

So, has anyone else done this, is it too much TOBI???

Also, does anyoen have the number for CFSource or experience getting an e-lfow from them when you are not getting tobra from them?

I am really excited and hoping to call CFsource and get it all straightened out this week, any guidance you can give woudl eb great. I told my nurse if she got the go ahead from doc I would do all footwork with CFsource since they dont normally use them and I have to keep up my end bargain <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
L

lightNlife

New member
There are some problems right now with being able to get an eFlow. Ever since the pre-mix colymycin scare, there's an increased amount of scrutiny on whether tobramycin is safe for use in the eFlow.

Your doctor is right, you will have to use tobramycin that is formulated differently from TOBI. What you'll be doing is inhaling the IV version and concentration of the drug. The reason for this is because the mechanism that aerosolizes the drug in the eFlow has such extremely small pores (hardly visible to the naked eye!) that the TOBI formulation would clog up those pores. You will also have to use dornase, instead of the brand name forumla Pulmozyme.

You'll be ordering the device from any of these three distributors. Depending on which state you're in, you'll have to contact either:

* Foundation Care
* Toll free phone 877-291-1122
* Fax 877-291-1155
* www.foundcare.com

or

* IV Solutions
* Toll free phone 800-658-6046
* Fax 800-791-7851
* www.ivsolutions.com

or

* Pharmaceutical Specialties, Inc.
* Toll free phone 800-818-6486
* Fax 800-818-6490
* www.psipharmacy.com

The whole process of getting an eFlow is currently delayed due to some safety concerns. There have not been studies demonstrating which specific amount of the drugs in their IV concentrations to use with the eFlow. That's still being investigated. Also, the company that distributes the medication is, at this point in time, only filling orders for patients who need to receive tobra, and HS, and Dnase.

I'm not quite sure what you mean when you ask "is it too much TOBI."

At this point, you're going to have to be prepared for a lot of legwork in order to obtain the eFlow, even with a prescription. Hang in there, it's likely to be frustrating. My clinic ordered an eFlow for me about a month ago, and I'm still waiting. I'll be sure to blog about it when I get it though!

Good luck.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> (this is a link to the page that tells you how to get an eFlow, and has a map of which distributors service which states)
 
L

lightNlife

New member
There are some problems right now with being able to get an eFlow. Ever since the pre-mix colymycin scare, there's an increased amount of scrutiny on whether tobramycin is safe for use in the eFlow.

Your doctor is right, you will have to use tobramycin that is formulated differently from TOBI. What you'll be doing is inhaling the IV version and concentration of the drug. The reason for this is because the mechanism that aerosolizes the drug in the eFlow has such extremely small pores (hardly visible to the naked eye!) that the TOBI formulation would clog up those pores. You will also have to use dornase, instead of the brand name forumla Pulmozyme.

You'll be ordering the device from any of these three distributors. Depending on which state you're in, you'll have to contact either:

* Foundation Care
* Toll free phone 877-291-1122
* Fax 877-291-1155
* www.foundcare.com

or

* IV Solutions
* Toll free phone 800-658-6046
* Fax 800-791-7851
* www.ivsolutions.com

or

* Pharmaceutical Specialties, Inc.
* Toll free phone 800-818-6486
* Fax 800-818-6490
* www.psipharmacy.com

The whole process of getting an eFlow is currently delayed due to some safety concerns. There have not been studies demonstrating which specific amount of the drugs in their IV concentrations to use with the eFlow. That's still being investigated. Also, the company that distributes the medication is, at this point in time, only filling orders for patients who need to receive tobra, and HS, and Dnase.

I'm not quite sure what you mean when you ask "is it too much TOBI."

At this point, you're going to have to be prepared for a lot of legwork in order to obtain the eFlow, even with a prescription. Hang in there, it's likely to be frustrating. My clinic ordered an eFlow for me about a month ago, and I'm still waiting. I'll be sure to blog about it when I get it though!

Good luck.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> (this is a link to the page that tells you how to get an eFlow, and has a map of which distributors service which states)
 
L

lightNlife

New member
There are some problems right now with being able to get an eFlow. Ever since the pre-mix colymycin scare, there's an increased amount of scrutiny on whether tobramycin is safe for use in the eFlow.

Your doctor is right, you will have to use tobramycin that is formulated differently from TOBI. What you'll be doing is inhaling the IV version and concentration of the drug. The reason for this is because the mechanism that aerosolizes the drug in the eFlow has such extremely small pores (hardly visible to the naked eye!) that the TOBI formulation would clog up those pores. You will also have to use dornase, instead of the brand name forumla Pulmozyme.

You'll be ordering the device from any of these three distributors. Depending on which state you're in, you'll have to contact either:

* Foundation Care
* Toll free phone 877-291-1122
* Fax 877-291-1155
* www.foundcare.com

or

* IV Solutions
* Toll free phone 800-658-6046
* Fax 800-791-7851
* www.ivsolutions.com

or

* Pharmaceutical Specialties, Inc.
* Toll free phone 800-818-6486
* Fax 800-818-6490
* www.psipharmacy.com

The whole process of getting an eFlow is currently delayed due to some safety concerns. There have not been studies demonstrating which specific amount of the drugs in their IV concentrations to use with the eFlow. That's still being investigated. Also, the company that distributes the medication is, at this point in time, only filling orders for patients who need to receive tobra, and HS, and Dnase.

I'm not quite sure what you mean when you ask "is it too much TOBI."

At this point, you're going to have to be prepared for a lot of legwork in order to obtain the eFlow, even with a prescription. Hang in there, it's likely to be frustrating. My clinic ordered an eFlow for me about a month ago, and I'm still waiting. I'll be sure to blog about it when I get it though!

Good luck.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> (this is a link to the page that tells you how to get an eFlow, and has a map of which distributors service which states)
 
L

lightNlife

New member
There are some problems right now with being able to get an eFlow. Ever since the pre-mix colymycin scare, there's an increased amount of scrutiny on whether tobramycin is safe for use in the eFlow.

Your doctor is right, you will have to use tobramycin that is formulated differently from TOBI. What you'll be doing is inhaling the IV version and concentration of the drug. The reason for this is because the mechanism that aerosolizes the drug in the eFlow has such extremely small pores (hardly visible to the naked eye!) that the TOBI formulation would clog up those pores. You will also have to use dornase, instead of the brand name forumla Pulmozyme.

You'll be ordering the device from any of these three distributors. Depending on which state you're in, you'll have to contact either:

* Foundation Care
* Toll free phone 877-291-1122
* Fax 877-291-1155
* www.foundcare.com

or

* IV Solutions
* Toll free phone 800-658-6046
* Fax 800-791-7851
* www.ivsolutions.com

or

* Pharmaceutical Specialties, Inc.
* Toll free phone 800-818-6486
* Fax 800-818-6490
* www.psipharmacy.com

The whole process of getting an eFlow is currently delayed due to some safety concerns. There have not been studies demonstrating which specific amount of the drugs in their IV concentrations to use with the eFlow. That's still being investigated. Also, the company that distributes the medication is, at this point in time, only filling orders for patients who need to receive tobra, and HS, and Dnase.

I'm not quite sure what you mean when you ask "is it too much TOBI."

At this point, you're going to have to be prepared for a lot of legwork in order to obtain the eFlow, even with a prescription. Hang in there, it's likely to be frustrating. My clinic ordered an eFlow for me about a month ago, and I'm still waiting. I'll be sure to blog about it when I get it though!

Good luck.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> (this is a link to the page that tells you how to get an eFlow, and has a map of which distributors service which states)
 
L

lightNlife

New member
There are some problems right now with being able to get an eFlow. Ever since the pre-mix colymycin scare, there's an increased amount of scrutiny on whether tobramycin is safe for use in the eFlow.

Your doctor is right, you will have to use tobramycin that is formulated differently from TOBI. What you'll be doing is inhaling the IV version and concentration of the drug. The reason for this is because the mechanism that aerosolizes the drug in the eFlow has such extremely small pores (hardly visible to the naked eye!) that the TOBI formulation would clog up those pores. You will also have to use dornase, instead of the brand name forumla Pulmozyme.

You'll be ordering the device from any of these three distributors. Depending on which state you're in, you'll have to contact either:

* Foundation Care
* Toll free phone 877-291-1122
* Fax 877-291-1155
* www.foundcare.com

or

* IV Solutions
* Toll free phone 800-658-6046
* Fax 800-791-7851
* www.ivsolutions.com

or

* Pharmaceutical Specialties, Inc.
* Toll free phone 800-818-6486
* Fax 800-818-6490
* www.psipharmacy.com

The whole process of getting an eFlow is currently delayed due to some safety concerns. There have not been studies demonstrating which specific amount of the drugs in their IV concentrations to use with the eFlow. That's still being investigated. Also, the company that distributes the medication is, at this point in time, only filling orders for patients who need to receive tobra, and HS, and Dnase.

I'm not quite sure what you mean when you ask "is it too much TOBI."

At this point, you're going to have to be prepared for a lot of legwork in order to obtain the eFlow, even with a prescription. Hang in there, it's likely to be frustrating. My clinic ordered an eFlow for me about a month ago, and I'm still waiting. I'll be sure to blog about it when I get it though!

Good luck.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.sourcecf-crd.com/">http://www.sourcecf-crd.com/</a> (this is a link to the page that tells you how to get an eFlow, and has a map of which distributors service which states)
 
M

mom2lillian

New member
Lauren-thank you for the distributors names however I think you might ahve misunderstood my ?, maybe I shoudl clarify it in original post.

<i>My docs are not happy with the studies, or lack thereof, showing what dosage of tobra to use and in fact different clinics are all using varying doses. Thus they want me to use TOBI instead--as in the regular brand name TOBI that I am currently using. </i>

I was not aware of there being a size issue with TOBI clogging e-flow I thoght it was just a patent issues, do you have more ifnormation on this or have a link for me to reference.

I did not realize that there had been this slow donw with getting an e-flow, thanks for warning me, I am almost out of pulmozyme and wasnt sure if I would get it through my old company or wait and get tthrough CFSource--I think I have my answer now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mom2lillian

New member
Lauren-thank you for the distributors names however I think you might ahve misunderstood my ?, maybe I shoudl clarify it in original post.

<i>My docs are not happy with the studies, or lack thereof, showing what dosage of tobra to use and in fact different clinics are all using varying doses. Thus they want me to use TOBI instead--as in the regular brand name TOBI that I am currently using. </i>

I was not aware of there being a size issue with TOBI clogging e-flow I thoght it was just a patent issues, do you have more ifnormation on this or have a link for me to reference.

I did not realize that there had been this slow donw with getting an e-flow, thanks for warning me, I am almost out of pulmozyme and wasnt sure if I would get it through my old company or wait and get tthrough CFSource--I think I have my answer now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mom2lillian

New member
Lauren-thank you for the distributors names however I think you might ahve misunderstood my ?, maybe I shoudl clarify it in original post.

<i>My docs are not happy with the studies, or lack thereof, showing what dosage of tobra to use and in fact different clinics are all using varying doses. Thus they want me to use TOBI instead--as in the regular brand name TOBI that I am currently using. </i>

I was not aware of there being a size issue with TOBI clogging e-flow I thoght it was just a patent issues, do you have more ifnormation on this or have a link for me to reference.

I did not realize that there had been this slow donw with getting an e-flow, thanks for warning me, I am almost out of pulmozyme and wasnt sure if I would get it through my old company or wait and get tthrough CFSource--I think I have my answer now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mom2lillian

New member
Lauren-thank you for the distributors names however I think you might ahve misunderstood my ?, maybe I shoudl clarify it in original post.

<i>My docs are not happy with the studies, or lack thereof, showing what dosage of tobra to use and in fact different clinics are all using varying doses. Thus they want me to use TOBI instead--as in the regular brand name TOBI that I am currently using. </i>

I was not aware of there being a size issue with TOBI clogging e-flow I thoght it was just a patent issues, do you have more ifnormation on this or have a link for me to reference.

I did not realize that there had been this slow donw with getting an e-flow, thanks for warning me, I am almost out of pulmozyme and wasnt sure if I would get it through my old company or wait and get tthrough CFSource--I think I have my answer now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

mom2lillian

New member
Lauren-thank you for the distributors names however I think you might ahve misunderstood my ?, maybe I shoudl clarify it in original post.

<i>My docs are not happy with the studies, or lack thereof, showing what dosage of tobra to use and in fact different clinics are all using varying doses. Thus they want me to use TOBI instead--as in the regular brand name TOBI that I am currently using. </i>

I was not aware of there being a size issue with TOBI clogging e-flow I thoght it was just a patent issues, do you have more ifnormation on this or have a link for me to reference.

I did not realize that there had been this slow donw with getting an e-flow, thanks for warning me, I am almost out of pulmozyme and wasnt sure if I would get it through my old company or wait and get tthrough CFSource--I think I have my answer now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

lightNlife

New member
Aha! Thanks for the clarification, now I know what you're asking.

They are probably wanting you to use the TOBI instead of tobramycin for a reason other than the particle sizes. Using IV tobra formulation in this "off label use" in the eFlow hasn't yet been fully studied for its safety. The concentration of tobramycin when it's formulated as TOBI is a lower concentration than if you were to use straight tobra. The concentration of tobra would be much higher, and many doctors feel uneasy about its safety, especially after the fatality that was reported in conjunction with nebulized colymycin (which was also the IV concentration.)

You're right, the correct dosage for the particular concentration of tobra has not yet been determined. My doctor said that when I get my meds with the eFlow, be very careful about how much tobra I'm putting in there. Better safe than sorry, especially with potent drugs like Tobra.

I have a colleague who is a neighbor to the gentleman who founded SourceCF. Perhaps it's time for me to place a call to Alabama and get the skinny straight from the horse's mouth, so to speak.
 
L

lightNlife

New member
Aha! Thanks for the clarification, now I know what you're asking.

They are probably wanting you to use the TOBI instead of tobramycin for a reason other than the particle sizes. Using IV tobra formulation in this "off label use" in the eFlow hasn't yet been fully studied for its safety. The concentration of tobramycin when it's formulated as TOBI is a lower concentration than if you were to use straight tobra. The concentration of tobra would be much higher, and many doctors feel uneasy about its safety, especially after the fatality that was reported in conjunction with nebulized colymycin (which was also the IV concentration.)

You're right, the correct dosage for the particular concentration of tobra has not yet been determined. My doctor said that when I get my meds with the eFlow, be very careful about how much tobra I'm putting in there. Better safe than sorry, especially with potent drugs like Tobra.

I have a colleague who is a neighbor to the gentleman who founded SourceCF. Perhaps it's time for me to place a call to Alabama and get the skinny straight from the horse's mouth, so to speak.
 
L

lightNlife

New member
Aha! Thanks for the clarification, now I know what you're asking.

They are probably wanting you to use the TOBI instead of tobramycin for a reason other than the particle sizes. Using IV tobra formulation in this "off label use" in the eFlow hasn't yet been fully studied for its safety. The concentration of tobramycin when it's formulated as TOBI is a lower concentration than if you were to use straight tobra. The concentration of tobra would be much higher, and many doctors feel uneasy about its safety, especially after the fatality that was reported in conjunction with nebulized colymycin (which was also the IV concentration.)

You're right, the correct dosage for the particular concentration of tobra has not yet been determined. My doctor said that when I get my meds with the eFlow, be very careful about how much tobra I'm putting in there. Better safe than sorry, especially with potent drugs like Tobra.

I have a colleague who is a neighbor to the gentleman who founded SourceCF. Perhaps it's time for me to place a call to Alabama and get the skinny straight from the horse's mouth, so to speak.
 
L

lightNlife

New member
Aha! Thanks for the clarification, now I know what you're asking.

They are probably wanting you to use the TOBI instead of tobramycin for a reason other than the particle sizes. Using IV tobra formulation in this "off label use" in the eFlow hasn't yet been fully studied for its safety. The concentration of tobramycin when it's formulated as TOBI is a lower concentration than if you were to use straight tobra. The concentration of tobra would be much higher, and many doctors feel uneasy about its safety, especially after the fatality that was reported in conjunction with nebulized colymycin (which was also the IV concentration.)

You're right, the correct dosage for the particular concentration of tobra has not yet been determined. My doctor said that when I get my meds with the eFlow, be very careful about how much tobra I'm putting in there. Better safe than sorry, especially with potent drugs like Tobra.

I have a colleague who is a neighbor to the gentleman who founded SourceCF. Perhaps it's time for me to place a call to Alabama and get the skinny straight from the horse's mouth, so to speak.
 
L

lightNlife

New member
Aha! Thanks for the clarification, now I know what you're asking.

They are probably wanting you to use the TOBI instead of tobramycin for a reason other than the particle sizes. Using IV tobra formulation in this "off label use" in the eFlow hasn't yet been fully studied for its safety. The concentration of tobramycin when it's formulated as TOBI is a lower concentration than if you were to use straight tobra. The concentration of tobra would be much higher, and many doctors feel uneasy about its safety, especially after the fatality that was reported in conjunction with nebulized colymycin (which was also the IV concentration.)

You're right, the correct dosage for the particular concentration of tobra has not yet been determined. My doctor said that when I get my meds with the eFlow, be very careful about how much tobra I'm putting in there. Better safe than sorry, especially with potent drugs like Tobra.

I have a colleague who is a neighbor to the gentleman who founded SourceCF. Perhaps it's time for me to place a call to Alabama and get the skinny straight from the horse's mouth, so to speak.
 
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