eflow questions

[Skye]

Keeping that head in alcohol ALL the time really keeps it working well.....so I would take it on the plane in alcohol in a plastic bag.....especially if you intend to be using it with HS. I TRIED HS in mine a few months ago and cleaned it but FORGOT to stick it in the alcohol after that and that head now takes about 7 minutes to run instead of the usual. I don't use that head anymore.

You know I am really IRRITATED that the CFF and clinics can't seem to get on the same page about meds we can use in the e-flow. I know that a lot of clinics and patients see no problem with using any meds in it as long as dosage is altered for abx; but, some of us go to our docs and even at the CF conference and WE are told DON'T use it for anything except AZLI, ughh!! I am soooo conservative that I want to follow docs orders that way and 2 docs at 2 different clinics have advised me NOT to do it. I take that back, one of my doctors OK'd it for HS and albuterol.....the bigger center was not on board with that even.

I know that was OFF topic; but, I can't wait til we can all be on the same page about this and I can feel perfectly comfortable with using the e-flow for all things.

 

[Skye]

Keeping that head in alcohol ALL the time really keeps it working well.....so I would take it on the plane in alcohol in a plastic bag.....especially if you intend to be using it with HS. I TRIED HS in mine a few months ago and cleaned it but FORGOT to stick it in the alcohol after that and that head now takes about 7 minutes to run instead of the usual. I don't use that head anymore.

You know I am really IRRITATED that the CFF and clinics can't seem to get on the same page about meds we can use in the e-flow. I know that a lot of clinics and patients see no problem with using any meds in it as long as dosage is altered for abx; but, some of us go to our docs and even at the CF conference and WE are told DON'T use it for anything except AZLI, ughh!! I am soooo conservative that I want to follow docs orders that way and 2 docs at 2 different clinics have advised me NOT to do it. I take that back, one of my doctors OK'd it for HS and albuterol.....the bigger center was not on board with that even.

I know that was OFF topic; but, I can't wait til we can all be on the same page about this and I can feel perfectly comfortable with using the e-flow for all things.

 

[Skye]

Keeping that head in alcohol ALL the time really keeps it working well.....so I would take it on the plane in alcohol in a plastic bag.....especially if you intend to be using it with HS. I TRIED HS in mine a few months ago and cleaned it but FORGOT to stick it in the alcohol after that and that head now takes about 7 minutes to run instead of the usual. I don't use that head anymore.

You know I am really IRRITATED that the CFF and clinics can't seem to get on the same page about meds we can use in the e-flow. I know that a lot of clinics and patients see no problem with using any meds in it as long as dosage is altered for abx; but, some of us go to our docs and even at the CF conference and WE are told DON'T use it for anything except AZLI, ughh!! I am soooo conservative that I want to follow docs orders that way and 2 docs at 2 different clinics have advised me NOT to do it. I take that back, one of my doctors OK'd it for HS and albuterol.....the bigger center was not on board with that even.

I know that was OFF topic; but, I can't wait til we can all be on the same page about this and I can feel perfectly comfortable with using the e-flow for all things.

 

[Skye]

Keeping that head in alcohol ALL the time really keeps it working well.....so I would take it on the plane in alcohol in a plastic bag.....especially if you intend to be using it with HS. I TRIED HS in mine a few months ago and cleaned it but FORGOT to stick it in the alcohol after that and that head now takes about 7 minutes to run instead of the usual. I don't use that head anymore.

You know I am really IRRITATED that the CFF and clinics can't seem to get on the same page about meds we can use in the e-flow. I know that a lot of clinics and patients see no problem with using any meds in it as long as dosage is altered for abx; but, some of us go to our docs and even at the CF conference and WE are told DON'T use it for anything except AZLI, ughh!! I am soooo conservative that I want to follow docs orders that way and 2 docs at 2 different clinics have advised me NOT to do it. I take that back, one of my doctors OK'd it for HS and albuterol.....the bigger center was not on board with that even.

I know that was OFF topic; but, I can't wait til we can all be on the same page about this and I can feel perfectly comfortable with using the e-flow for all things.

 

[Skye]

Keeping that head in alcohol ALL the time really keeps it working well.....so I would take it on the plane in alcohol in a plastic bag.....especially if you intend to be using it with HS. I TRIED HS in mine a few months ago and cleaned it but FORGOT to stick it in the alcohol after that and that head now takes about 7 minutes to run instead of the usual. I don't use that head anymore.
<br />
<br />You know I am really IRRITATED that the CFF and clinics can't seem to get on the same page about meds we can use in the e-flow. I know that a lot of clinics and patients see no problem with using any meds in it as long as dosage is altered for abx; but, some of us go to our docs and even at the CF conference and WE are told DON'T use it for anything except AZLI, ughh!! I am soooo conservative that I want to follow docs orders that way and 2 docs at 2 different clinics have advised me NOT to do it. I take that back, one of my doctors OK'd it for HS and albuterol.....the bigger center was not on board with that even.
<br />
<br />I know that was OFF topic; but, I can't wait til we can all be on the same page about this and I can feel perfectly comfortable with using the e-flow for all things.

 

[saveferris2009]

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.

PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!

I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.


CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.

 

[saveferris2009]

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.

PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!

I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.


CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.

 

[saveferris2009]

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.

PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!

I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.


CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.

 

[saveferris2009]

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.

PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!

I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.


CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.

 

[saveferris2009]

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.
<br />
<br />PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!
<br />
<br />I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.
<br />
<br />
<br />CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.
<br />

 

[zeeannie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.



PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!



I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.





CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.</end quote></div>


This might be a little late, but as for the TOBI there is a different formulation for use in the e-Flow, Tobramycin 100, not TOBI, and it's made by PARI. From what I saw today this formulation is still in clinical trials. So the confusion with TOBI might be coming from the fact that some are using the new formulation as part of a trial and calling it TOBI. I've been reading a lot about e-Flow and finding a lot of confusing and conflicting info, so what I said might be coming out of my a## but that was one thing that wasn't quite so confusing.

Anyway, here's the article I found it in:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/clinical_trials/pari-pharma-completes-successful-clinical-trials-tobramycin-100-investigational-eflow-cf-6174.html
">http://www.drugs.com/clinical_...al-eflow-cf-6174.html
</a>

 

[zeeannie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.



PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!



I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.





CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.</end quote></div>


This might be a little late, but as for the TOBI there is a different formulation for use in the e-Flow, Tobramycin 100, not TOBI, and it's made by PARI. From what I saw today this formulation is still in clinical trials. So the confusion with TOBI might be coming from the fact that some are using the new formulation as part of a trial and calling it TOBI. I've been reading a lot about e-Flow and finding a lot of confusing and conflicting info, so what I said might be coming out of my a## but that was one thing that wasn't quite so confusing.

Anyway, here's the article I found it in:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/clinical_trials/pari-pharma-completes-successful-clinical-trials-tobramycin-100-investigational-eflow-cf-6174.html
">http://www.drugs.com/clinical_...al-eflow-cf-6174.html
</a>

 

[zeeannie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.



PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!



I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.





CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.</end quote></div>


This might be a little late, but as for the TOBI there is a different formulation for use in the e-Flow, Tobramycin 100, not TOBI, and it's made by PARI. From what I saw today this formulation is still in clinical trials. So the confusion with TOBI might be coming from the fact that some are using the new formulation as part of a trial and calling it TOBI. I've been reading a lot about e-Flow and finding a lot of confusing and conflicting info, so what I said might be coming out of my a## but that was one thing that wasn't quite so confusing.

Anyway, here's the article I found it in:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/clinical_trials/pari-pharma-completes-successful-clinical-trials-tobramycin-100-investigational-eflow-cf-6174.html
">http://www.drugs.com/clinical_...al-eflow-cf-6174.html
</a>

 

[zeeannie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>

well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.



PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!



I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.





CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.</end quote>


This might be a little late, but as for the TOBI there is a different formulation for use in the e-Flow, Tobramycin 100, not TOBI, and it's made by PARI. From what I saw today this formulation is still in clinical trials. So the confusion with TOBI might be coming from the fact that some are using the new formulation as part of a trial and calling it TOBI. I've been reading a lot about e-Flow and finding a lot of confusing and conflicting info, so what I said might be coming out of my a## but that was one thing that wasn't quite so confusing.

Anyway, here's the article I found it in:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/clinical_trials/pari-pharma-completes-successful-clinical-trials-tobramycin-100-investigational-eflow-cf-6174.html
">http://www.drugs.com/clinical_...al-eflow-cf-6174.html
</a>

 

[zeeannie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />well the problem is this - these medications are already FDA approved. You don't have to get FDA approval each time a new delivery device comes on the market.
<br />
<br />
<br />
<br />PARI did conduct a study with nearly all CF meds.... so I'm not sure what else docs are holding their breath for. Studies are EXPENSIVE, so who would fit the bill for more studies if one has already been conducted?!
<br />
<br />
<br />
<br />I'm sure most of you would agree - I want CFF's limited dollars going to bringing new drugs to the market - not re-iterating studies that have already been done for drugs that are already FDA approved.
<br />
<br />
<br />
<br />
<br />
<br />CF is progressive... and it's already time consuming enough to comply with all of our therapies. Those docs who wait on the sidelines when studies have already been conducted are doing a disservice to their patients I believe.</end quote>
<br />
<br />
<br />This might be a little late, but as for the TOBI there is a different formulation for use in the e-Flow, Tobramycin 100, not TOBI, and it's made by PARI. From what I saw today this formulation is still in clinical trials. So the confusion with TOBI might be coming from the fact that some are using the new formulation as part of a trial and calling it TOBI. I've been reading a lot about e-Flow and finding a lot of confusing and conflicting info, so what I said might be coming out of my a## but that was one thing that wasn't quite so confusing.
<br />
<br />Anyway, here's the article I found it in:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.drugs.com/clinical_trials/pari-pharma-completes-successful-clinical-trials-tobramycin-100-investigational-eflow-cf-6174.html
">http://www.drugs.com/clinical_...al-eflow-cf-6174.html
</a><br />
<br />

 

[nick9742]

I'd like an answer from someone who is using it for the aztreonam. I really want to try my pulmozyme in this but everyone at my CF clinic said no. Yet some places I've read online say it's alright. Is it because mine is supplied in the trial? It looked just like a regular device in the box and everything, so the only thing I wonder is if the Pulmozyme is safe to try...

 

[nick9742]

I'd like an answer from someone who is using it for the aztreonam. I really want to try my pulmozyme in this but everyone at my CF clinic said no. Yet some places I've read online say it's alright. Is it because mine is supplied in the trial? It looked just like a regular device in the box and everything, so the only thing I wonder is if the Pulmozyme is safe to try...

 

[nick9742]

I'd like an answer from someone who is using it for the aztreonam. I really want to try my pulmozyme in this but everyone at my CF clinic said no. Yet some places I've read online say it's alright. Is it because mine is supplied in the trial? It looked just like a regular device in the box and everything, so the only thing I wonder is if the Pulmozyme is safe to try...

 

[nick9742]

I'd like an answer from someone who is using it for the aztreonam. I really want to try my pulmozyme in this but everyone at my CF clinic said no. Yet some places I've read online say it's alright. Is it because mine is supplied in the trial? It looked just like a regular device in the box and everything, so the only thing I wonder is if the Pulmozyme is safe to try...

 

[nick9742]

I'd like an answer from someone who is using it for the aztreonam. I really want to try my pulmozyme in this but everyone at my CF clinic said no. Yet some places I've read online say it's alright. Is it because mine is supplied in the trial? It looked just like a regular device in the box and everything, so the only thing I wonder is if the Pulmozyme is safe to try...