Which clinical trial are you in?

J

Jeana

New member
I did the inhaled Aztreonam study and had good results. It didn't bother me at all and I don't do inhaled TOBI because it bothers me so much. Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)

Anyway, I attempted once to get on the Denufasol study. I plan to try again in about a month. If I don't make it due to my FEV1, then I will try to get on the Vertex 770 study.
 
J

Jeana

New member
I did the inhaled Aztreonam study and had good results. It didn't bother me at all and I don't do inhaled TOBI because it bothers me so much. Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)

Anyway, I attempted once to get on the Denufasol study. I plan to try again in about a month. If I don't make it due to my FEV1, then I will try to get on the Vertex 770 study.
 
J

Jeana

New member
I did the inhaled Aztreonam study and had good results. It didn't bother me at all and I don't do inhaled TOBI because it bothers me so much. Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)

Anyway, I attempted once to get on the Denufasol study. I plan to try again in about a month. If I don't make it due to my FEV1, then I will try to get on the Vertex 770 study.
 
J

Jeana

New member
I did the inhaled Aztreonam study and had good results. It didn't bother me at all and I don't do inhaled TOBI because it bothers me so much. Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)

Anyway, I attempted once to get on the Denufasol study. I plan to try again in about a month. If I don't make it due to my FEV1, then I will try to get on the Vertex 770 study.
 
J

Jeana

New member
I did the inhaled Aztreonam study and had good results. It didn't bother me at all and I don't do inhaled TOBI because it bothers me so much. Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)
<br />
<br />Anyway, I attempted once to get on the Denufasol study. I plan to try again in about a month. If I don't make it due to my FEV1, then I will try to get on the Vertex 770 study.
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)</end quote></div>

Really? You didnt culture PA while on AZLI? I have been on AZLI for almost four years and still culture it. I understand abx wont always prove to get rid of the whole bug, but I wonder what causes that. Like why do some people get rid of the whole bug and not others.

Also, I have been in AZLI and I absolutely LOVE it. I was so excited back in 2005 when my doctor asked me to be a part of the study and I have done extremely well health-wise. And although it sucks that other CFers still dont have acces to AZLI, I still get it for free because I am part of the Expanded Access. But I do really hope it gets approved soon, for the rest of you to try.

In addition I wanted to try Denufosol, but my center isnt doing it. Not that that would always stop me (I do have other centers close by)...but right now AZLI is working for me (and usually while on other studies, you cant start a new one), so I dont feel comfortable stopping it. But def once AZLI gets approved I would love to be a part of other studies!
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)</end quote></div>

Really? You didnt culture PA while on AZLI? I have been on AZLI for almost four years and still culture it. I understand abx wont always prove to get rid of the whole bug, but I wonder what causes that. Like why do some people get rid of the whole bug and not others.

Also, I have been in AZLI and I absolutely LOVE it. I was so excited back in 2005 when my doctor asked me to be a part of the study and I have done extremely well health-wise. And although it sucks that other CFers still dont have acces to AZLI, I still get it for free because I am part of the Expanded Access. But I do really hope it gets approved soon, for the rest of you to try.

In addition I wanted to try Denufosol, but my center isnt doing it. Not that that would always stop me (I do have other centers close by)...but right now AZLI is working for me (and usually while on other studies, you cant start a new one), so I dont feel comfortable stopping it. But def once AZLI gets approved I would love to be a part of other studies!
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)</end quote></div>

Really? You didnt culture PA while on AZLI? I have been on AZLI for almost four years and still culture it. I understand abx wont always prove to get rid of the whole bug, but I wonder what causes that. Like why do some people get rid of the whole bug and not others.

Also, I have been in AZLI and I absolutely LOVE it. I was so excited back in 2005 when my doctor asked me to be a part of the study and I have done extremely well health-wise. And although it sucks that other CFers still dont have acces to AZLI, I still get it for free because I am part of the Expanded Access. But I do really hope it gets approved soon, for the rest of you to try.

In addition I wanted to try Denufosol, but my center isnt doing it. Not that that would always stop me (I do have other centers close by)...but right now AZLI is working for me (and usually while on other studies, you cant start a new one), so I dont feel comfortable stopping it. But def once AZLI gets approved I would love to be a part of other studies!
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)</end quote>

Really? You didnt culture PA while on AZLI? I have been on AZLI for almost four years and still culture it. I understand abx wont always prove to get rid of the whole bug, but I wonder what causes that. Like why do some people get rid of the whole bug and not others.

Also, I have been in AZLI and I absolutely LOVE it. I was so excited back in 2005 when my doctor asked me to be a part of the study and I have done extremely well health-wise. And although it sucks that other CFers still dont have acces to AZLI, I still get it for free because I am part of the Expanded Access. But I do really hope it gets approved soon, for the rest of you to try.

In addition I wanted to try Denufosol, but my center isnt doing it. Not that that would always stop me (I do have other centers close by)...but right now AZLI is working for me (and usually while on other studies, you cant start a new one), so I dont feel comfortable stopping it. But def once AZLI gets approved I would love to be a part of other studies!
 
M

MCGrad2006

Guest
<div class="FTQUOTE"><begin quote>Anyway, I didn't culture PA for over a year after being on the study. (And this was after culturing PA in every single culture for 10 years straight.)</end quote>
<br />
<br />Really? You didnt culture PA while on AZLI? I have been on AZLI for almost four years and still culture it. I understand abx wont always prove to get rid of the whole bug, but I wonder what causes that. Like why do some people get rid of the whole bug and not others.
<br />
<br />Also, I have been in AZLI and I absolutely LOVE it. I was so excited back in 2005 when my doctor asked me to be a part of the study and I have done extremely well health-wise. And although it sucks that other CFers still dont have acces to AZLI, I still get it for free because I am part of the Expanded Access. But I do really hope it gets approved soon, for the rest of you to try.
<br />
<br />In addition I wanted to try Denufosol, but my center isnt doing it. Not that that would always stop me (I do have other centers close by)...but right now AZLI is working for me (and usually while on other studies, you cant start a new one), so I dont feel comfortable stopping it. But def once AZLI gets approved I would love to be a part of other studies!
 
J

Jeana

New member
Caitlin,
The PA is back again, just so you know. My doc said that either since CFers are so prone to get PA that I got it back OR I never really got rid of it but that there was so little in my sputum that the cultures did not pick it up. Anyway, I would love for the Aztreonam to come out just so I have an alternative to the TOBI that I do horrible on or the PICC lines.

ChevyZ71,
I second what Saveferris said about looking into them paying for you. The Aztreonam study paid for my flights and Denufasol was going to also if I qualified.
 
J

Jeana

New member
Caitlin,
The PA is back again, just so you know. My doc said that either since CFers are so prone to get PA that I got it back OR I never really got rid of it but that there was so little in my sputum that the cultures did not pick it up. Anyway, I would love for the Aztreonam to come out just so I have an alternative to the TOBI that I do horrible on or the PICC lines.

ChevyZ71,
I second what Saveferris said about looking into them paying for you. The Aztreonam study paid for my flights and Denufasol was going to also if I qualified.
 
J

Jeana

New member
Caitlin,
The PA is back again, just so you know. My doc said that either since CFers are so prone to get PA that I got it back OR I never really got rid of it but that there was so little in my sputum that the cultures did not pick it up. Anyway, I would love for the Aztreonam to come out just so I have an alternative to the TOBI that I do horrible on or the PICC lines.

ChevyZ71,
I second what Saveferris said about looking into them paying for you. The Aztreonam study paid for my flights and Denufasol was going to also if I qualified.
 
J

Jeana

New member
Caitlin,
The PA is back again, just so you know. My doc said that either since CFers are so prone to get PA that I got it back OR I never really got rid of it but that there was so little in my sputum that the cultures did not pick it up. Anyway, I would love for the Aztreonam to come out just so I have an alternative to the TOBI that I do horrible on or the PICC lines.

ChevyZ71,
I second what Saveferris said about looking into them paying for you. The Aztreonam study paid for my flights and Denufasol was going to also if I qualified.
 
J

Jeana

New member
Caitlin,
<br />The PA is back again, just so you know. My doc said that either since CFers are so prone to get PA that I got it back OR I never really got rid of it but that there was so little in my sputum that the cultures did not pick it up. Anyway, I would love for the Aztreonam to come out just so I have an alternative to the TOBI that I do horrible on or the PICC lines.
<br />
<br />ChevyZ71,
<br />I second what Saveferris said about looking into them paying for you. The Aztreonam study paid for my flights and Denufasol was going to also if I qualified.
 
X

xosder22

Member
i am about to start the head to head aztreonam v tobi study. i get randomized on friday.

i just finished the bipi study which is spiriva i think. testing its effectiveness with cf. its already approved for other respiratory problems. i pretty sure i had placebo though. no change in anything with me
 
X

xosder22

Member
i am about to start the head to head aztreonam v tobi study. i get randomized on friday.

i just finished the bipi study which is spiriva i think. testing its effectiveness with cf. its already approved for other respiratory problems. i pretty sure i had placebo though. no change in anything with me
 
X

xosder22

Member
i am about to start the head to head aztreonam v tobi study. i get randomized on friday.

i just finished the bipi study which is spiriva i think. testing its effectiveness with cf. its already approved for other respiratory problems. i pretty sure i had placebo though. no change in anything with me
 
X

xosder22

Member
i am about to start the head to head aztreonam v tobi study. i get randomized on friday.

i just finished the bipi study which is spiriva i think. testing its effectiveness with cf. its already approved for other respiratory problems. i pretty sure i had placebo though. no change in anything with me
 
X

xosder22

Member
i am about to start the head to head aztreonam v tobi study. i get randomized on friday.
<br />
<br />i just finished the bipi study which is spiriva i think. testing its effectiveness with cf. its already approved for other respiratory problems. i pretty sure i had placebo though. no change in anything with me
 
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