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aztreonam expanded access
- Thread starter ladybug
- Start date
M
MCGrad2006
Guest
I was under the impression that the only people who can get into expanded access are those that were in the study and those with severe lung disease (waiting for a tx). I was in the original study and AZLI has worked wonders for me. I have now been on the drug for since Thanksgiving of 2005, off and on, of course.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
M
MCGrad2006
Guest
I was under the impression that the only people who can get into expanded access are those that were in the study and those with severe lung disease (waiting for a tx). I was in the original study and AZLI has worked wonders for me. I have now been on the drug for since Thanksgiving of 2005, off and on, of course.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
M
MCGrad2006
Guest
I was under the impression that the only people who can get into expanded access are those that were in the study and those with severe lung disease (waiting for a tx). I was in the original study and AZLI has worked wonders for me. I have now been on the drug for since Thanksgiving of 2005, off and on, of course.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
M
MCGrad2006
Guest
I was under the impression that the only people who can get into expanded access are those that were in the study and those with severe lung disease (waiting for a tx). I was in the original study and AZLI has worked wonders for me. I have now been on the drug for since Thanksgiving of 2005, off and on, of course.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
M
MCGrad2006
Guest
I was under the impression that the only people who can get into expanded access are those that were in the study and those with severe lung disease (waiting for a tx). I was in the original study and AZLI has worked wonders for me. I have now been on the drug for since Thanksgiving of 2005, off and on, of course.
<br />
<br />I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
<br />
<br />The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
<br />
<br />I have been very healthy with the drug and only tend to get sick when off of AZLI. I hope that it is available to others soon as it seems to be so good for me. I have not had any side effects or anything, so another benefit.
<br />
<br />The eflow, in my opinion, is a great solution to doing nebs quicker. I don't like the cleaning, it takes longer than the actual treatment and is much more involved. I have never had issues with clogging or not misting...but I also don't clean it like others. I rinse with water after every treatment and sanitize once or twice a week...I feel as though the sanitizing sometimes degrades the plastic causing issues.
NYCLawGirl
New member
You don''t have to be listed for transplant, but your FEV1 has to be 50% or below.
NYCLawGirl
New member
You don''t have to be listed for transplant, but your FEV1 has to be 50% or below.
NYCLawGirl
New member
You don''t have to be listed for transplant, but your FEV1 has to be 50% or below.
NYCLawGirl
New member
You don''t have to be listed for transplant, but your FEV1 has to be 50% or below.
NYCLawGirl
New member
You don''t have to be listed for transplant, but your FEV1 has to be 50% or below.
Thanks, everyone.
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks, everyone.
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks, everyone.
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks, everyone.
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks, everyone.
<br />
<br />The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
<br />
<br />With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
<br />
<br />I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
<br />
<br />So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
<br />
<br />Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />The eap site says you have to be listed for transplant or within transplant standards, doesn't it? Am I reading it wrong.
<br />
<br />With my recent severe decline in FEV1 (even after IV abx), I am below 50 for sure. I'm also pan resistant to abx AND even with syngery do not get relief from combos that should work.
<br />
<br />I also think they're wanting to try to get me on it since nothing else has worked at all (IV abx worked for a week and then I plummeted back to below 50%) and I'm sicker, on O2 more, no energy, etc. I think they want to do this for me cause if this doesn't help, they'll treat the MAC, which is 18-24 month treatment.
<br />
<br />So, I guess in my case, I am kinda out of options and getting sicker quite quickly, but the way they talk on the EAP site is that you have to meet criteria for transplant to get it. Hmmm....
<br />
<br />Thanks, everyone!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">