I went to a very large adult and pediatric Foundation accredited children's hospital today for a clinic visit. I love the e-flow so much on the AL study that I planned to get one and use it for all other meds. I was told by a group of CF physicians who have specialized in CF for years that, at this point in time, they would Never OK a patient's use of the e-flow with other inhaled antibiotics until there is further research to support its use. Their opinion is that the compound companies that are encouraging this are being very irresponsible and that, though they CAN do it, they should not be. They are aware that some clinics are doing it; but, they are not approving it at this time. They also sited the recent death of a CF patient who received pre-mixed Collistin from a compound company, which calls into question their knowledge and judgement about inhaled antibiotics. I am not saying I agree with all of them; but, I am saying I am very concerned and would like to hear what other doctors or large accredited clinics are advising. I don't really care about what the compound companies are saying, I know what their opoinion is. I really am very interested in opinions that have come from CF docs at other clinics and what the CF Foundation's stand is on the issue. Thanks for the input!
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confused
- Thread starter Skye
- Start date
I went to a very large adult and pediatric Foundation accredited children's hospital today for a clinic visit. I love the e-flow so much on the AL study that I planned to get one and use it for all other meds. I was told by a group of CF physicians who have specialized in CF for years that, at this point in time, they would Never OK a patient's use of the e-flow with other inhaled antibiotics until there is further research to support its use. Their opinion is that the compound companies that are encouraging this are being very irresponsible and that, though they CAN do it, they should not be. They are aware that some clinics are doing it; but, they are not approving it at this time. They also sited the recent death of a CF patient who received pre-mixed Collistin from a compound company, which calls into question their knowledge and judgement about inhaled antibiotics. I am not saying I agree with all of them; but, I am saying I am very concerned and would like to hear what other doctors or large accredited clinics are advising. I don't really care about what the compound companies are saying, I know what their opoinion is. I really am very interested in opinions that have come from CF docs at other clinics and what the CF Foundation's stand is on the issue. Thanks for the input!
I went to a very large adult and pediatric Foundation accredited children's hospital today for a clinic visit. I love the e-flow so much on the AL study that I planned to get one and use it for all other meds. I was told by a group of CF physicians who have specialized in CF for years that, at this point in time, they would Never OK a patient's use of the e-flow with other inhaled antibiotics until there is further research to support its use. Their opinion is that the compound companies that are encouraging this are being very irresponsible and that, though they CAN do it, they should not be. They are aware that some clinics are doing it; but, they are not approving it at this time. They also sited the recent death of a CF patient who received pre-mixed Collistin from a compound company, which calls into question their knowledge and judgement about inhaled antibiotics. I am not saying I agree with all of them; but, I am saying I am very concerned and would like to hear what other doctors or large accredited clinics are advising. I don't really care about what the compound companies are saying, I know what their opoinion is. I really am very interested in opinions that have come from CF docs at other clinics and what the CF Foundation's stand is on the issue. Thanks for the input!
I went to a very large adult and pediatric Foundation accredited children's hospital today for a clinic visit. I love the e-flow so much on the AL study that I planned to get one and use it for all other meds. I was told by a group of CF physicians who have specialized in CF for years that, at this point in time, they would Never OK a patient's use of the e-flow with other inhaled antibiotics until there is further research to support its use. Their opinion is that the compound companies that are encouraging this are being very irresponsible and that, though they CAN do it, they should not be. They are aware that some clinics are doing it; but, they are not approving it at this time. They also sited the recent death of a CF patient who received pre-mixed Collistin from a compound company, which calls into question their knowledge and judgement about inhaled antibiotics. I am not saying I agree with all of them; but, I am saying I am very concerned and would like to hear what other doctors or large accredited clinics are advising. I don't really care about what the compound companies are saying, I know what their opoinion is. I really am very interested in opinions that have come from CF docs at other clinics and what the CF Foundation's stand is on the issue. Thanks for the input!
I went to a very large adult and pediatric Foundation accredited children's hospital today for a clinic visit. I love the e-flow so much on the AL study that I planned to get one and use it for all other meds. I was told by a group of CF physicians who have specialized in CF for years that, at this point in time, they would Never OK a patient's use of the e-flow with other inhaled antibiotics until there is further research to support its use. Their opinion is that the compound companies that are encouraging this are being very irresponsible and that, though they CAN do it, they should not be. They are aware that some clinics are doing it; but, they are not approving it at this time. They also sited the recent death of a CF patient who received pre-mixed Collistin from a compound company, which calls into question their knowledge and judgement about inhaled antibiotics. I am not saying I agree with all of them; but, I am saying I am very concerned and would like to hear what other doctors or large accredited clinics are advising. I don't really care about what the compound companies are saying, I know what their opoinion is. I really am very interested in opinions that have come from CF docs at other clinics and what the CF Foundation's stand is on the issue. Thanks for the input!
mom2lillian
New member
skye-what you said is pretty much exactly what my clinic has said. They have seen the studies supporting its use, I have provided them with EVERYTHIGN in addition just ot make sure. They are ok with me using it but not with the TOBI/tobra and of course I cant afford the thing unless I am using that and getting it via CFSource. This was my clinics opinion prior ot the convention but they said everythign presented and the physician roundtable etc concreted their position.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
mom2lillian
New member
skye-what you said is pretty much exactly what my clinic has said. They have seen the studies supporting its use, I have provided them with EVERYTHIGN in addition just ot make sure. They are ok with me using it but not with the TOBI/tobra and of course I cant afford the thing unless I am using that and getting it via CFSource. This was my clinics opinion prior ot the convention but they said everythign presented and the physician roundtable etc concreted their position.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
mom2lillian
New member
skye-what you said is pretty much exactly what my clinic has said. They have seen the studies supporting its use, I have provided them with EVERYTHIGN in addition just ot make sure. They are ok with me using it but not with the TOBI/tobra and of course I cant afford the thing unless I am using that and getting it via CFSource. This was my clinics opinion prior ot the convention but they said everythign presented and the physician roundtable etc concreted their position.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
mom2lillian
New member
skye-what you said is pretty much exactly what my clinic has said. They have seen the studies supporting its use, I have provided them with EVERYTHIGN in addition just ot make sure. They are ok with me using it but not with the TOBI/tobra and of course I cant afford the thing unless I am using that and getting it via CFSource. This was my clinics opinion prior ot the convention but they said everythign presented and the physician roundtable etc concreted their position.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
mom2lillian
New member
skye-what you said is pretty much exactly what my clinic has said. They have seen the studies supporting its use, I have provided them with EVERYTHIGN in addition just ot make sure. They are ok with me using it but not with the TOBI/tobra and of course I cant afford the thing unless I am using that and getting it via CFSource. This was my clinics opinion prior ot the convention but they said everythign presented and the physician roundtable etc concreted their position.
<br />
<br />On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
<br />
<br />
<br />
<br />On the bright side there is a drug (cant remmeber name) slated to come out end 08 beginnign of 09 that utilizes e-flow as are most all drugs in trial so its only a matter of time before we get one anyway.
<br />
<br />
Nicole,
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
Nicole,
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
Nicole,
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
Nicole,
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
Karen
Nicole,
<br />The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
<br />
<br />Karen
<br />The drug you refer to is called Aztreanam Lysine. Yes, it is for use with the e-flow. I am participating in the study and it is fabulous, so is the e-flow. When AL comes out, it will be prescribed with the e-flow. I am glad to hear another clinics opinion. Thanks!
<br />
<br />Karen
NYCLawGirl
New member
My doc said that the eflow couldn't be used with TOBI, but that there is another form of tobra that it was ok to use with the eflow. I decided not to bother changing my drug, but I have to admit I'm concerned now. She is usually really cautious about this sort of thing - she definitely pulled everyone off pre-mixed colistin and pays attention to concerns about drug safety (obviousy). She also said not to use my DNase with the eflow. Does anyone else know which drugs are safe to use with the device?
NYCLawGirl
New member
My doc said that the eflow couldn't be used with TOBI, but that there is another form of tobra that it was ok to use with the eflow. I decided not to bother changing my drug, but I have to admit I'm concerned now. She is usually really cautious about this sort of thing - she definitely pulled everyone off pre-mixed colistin and pays attention to concerns about drug safety (obviousy). She also said not to use my DNase with the eflow. Does anyone else know which drugs are safe to use with the device?
NYCLawGirl
New member
My doc said that the eflow couldn't be used with TOBI, but that there is another form of tobra that it was ok to use with the eflow. I decided not to bother changing my drug, but I have to admit I'm concerned now. She is usually really cautious about this sort of thing - she definitely pulled everyone off pre-mixed colistin and pays attention to concerns about drug safety (obviousy). She also said not to use my DNase with the eflow. Does anyone else know which drugs are safe to use with the device?
NYCLawGirl
New member
My doc said that the eflow couldn't be used with TOBI, but that there is another form of tobra that it was ok to use with the eflow. I decided not to bother changing my drug, but I have to admit I'm concerned now. She is usually really cautious about this sort of thing - she definitely pulled everyone off pre-mixed colistin and pays attention to concerns about drug safety (obviousy). She also said not to use my DNase with the eflow. Does anyone else know which drugs are safe to use with the device?
NYCLawGirl
New member
My doc said that the eflow couldn't be used with TOBI, but that there is another form of tobra that it was ok to use with the eflow. I decided not to bother changing my drug, but I have to admit I'm concerned now. She is usually really cautious about this sort of thing - she definitely pulled everyone off pre-mixed colistin and pays attention to concerns about drug safety (obviousy). She also said not to use my DNase with the eflow. Does anyone else know which drugs are safe to use with the device?