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Clinical Trials for Cystic Fibrosis

RonnieSharpe

New member
I haven't been part of many clinical trials but I am looking forward to getting more information on current ones. What has your experience with clinical trials been? Are you in any currently? What's the most dramatic improvement you've ever had during a clinical trial?

To here more thoughts of mine on this subject, go to:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/clinical-trials-for-cystic-fibrosis.html">http://runsickboyrun.blogspot....r-cystic-fibrosis.html</a>
 

RonnieSharpe

New member
I haven't been part of many clinical trials but I am looking forward to getting more information on current ones. What has your experience with clinical trials been? Are you in any currently? What's the most dramatic improvement you've ever had during a clinical trial?

To here more thoughts of mine on this subject, go to:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/clinical-trials-for-cystic-fibrosis.html">http://runsickboyrun.blogspot....r-cystic-fibrosis.html</a>
 

RonnieSharpe

New member
I haven't been part of many clinical trials but I am looking forward to getting more information on current ones. What has your experience with clinical trials been? Are you in any currently? What's the most dramatic improvement you've ever had during a clinical trial?

To here more thoughts of mine on this subject, go to:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/clinical-trials-for-cystic-fibrosis.html">http://runsickboyrun.blogspot....r-cystic-fibrosis.html</a>
 

RonnieSharpe

New member
I haven't been part of many clinical trials but I am looking forward to getting more information on current ones. What has your experience with clinical trials been? Are you in any currently? What's the most dramatic improvement you've ever had during a clinical trial?

To here more thoughts of mine on this subject, go to:

<a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/clinical-trials-for-cystic-fibrosis.html">http://runsickboyrun.blogspot....r-cystic-fibrosis.html</a>
 

RonnieSharpe

New member
I haven't been part of many clinical trials but I am looking forward to getting more information on current ones. What has your experience with clinical trials been? Are you in any currently? What's the most dramatic improvement you've ever had during a clinical trial?
<br />
<br />To here more thoughts of mine on this subject, go to:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://runsickboyrun.blogspot.com/2009/07/clinical-trials-for-cystic-fibrosis.html">http://runsickboyrun.blogspot....r-cystic-fibrosis.html</a>
 

Jeana

New member
I was on the inhaled Aztreonam study. I actually had the Aztreonam and not the placebo. I can't remember how long I was on it when it happened, but eventually Psuedomonas know longer showed up in my culture. After this had happened twice, my CF doc took me off of the Aztreonam. I was PA free for about a year and a half and then the PA made another appearance. This was after having PA for at least 10 years straight every culture. Anyway, when at the time the PA reappeared, I was trying to get pregnant and unable to get back on the study. At the present time I can't get back on the study because they are excluding anyone who has had reactions to inhaled antibiotics and I have severe reactions to TOBI.

So, what is my next clinical trial? Well, I will either be in the Denufasol study, my top pick, if my lung function is at a 75% or better. The way they calculate the FEV1 is slightly different than my CF doc's, so in May of this year, I was at a 77% by this drug study's calculations. I'm hoping to make it. Denufasol provides an alternate chloride channel, kind of like mice have, which is why mice do not show symptoms of CF when their CFTR are given a CF mutation.

Anyway, if my lung function is not quite high enough than I will get on the Vertex 770 study, which is the potentiator. It moves the CFTR to the outside edge of the cell. I'm not sure how good it will work without the corrector to fix the CFTR at the edge of the cell, but you never know.

Anyway, I can only discuss this until I sign up for a drug study, which may be as early as August 4, so let me know if you have any questions. Lots of luck choosing the right clinical trial for you.
 

Jeana

New member
I was on the inhaled Aztreonam study. I actually had the Aztreonam and not the placebo. I can't remember how long I was on it when it happened, but eventually Psuedomonas know longer showed up in my culture. After this had happened twice, my CF doc took me off of the Aztreonam. I was PA free for about a year and a half and then the PA made another appearance. This was after having PA for at least 10 years straight every culture. Anyway, when at the time the PA reappeared, I was trying to get pregnant and unable to get back on the study. At the present time I can't get back on the study because they are excluding anyone who has had reactions to inhaled antibiotics and I have severe reactions to TOBI.

So, what is my next clinical trial? Well, I will either be in the Denufasol study, my top pick, if my lung function is at a 75% or better. The way they calculate the FEV1 is slightly different than my CF doc's, so in May of this year, I was at a 77% by this drug study's calculations. I'm hoping to make it. Denufasol provides an alternate chloride channel, kind of like mice have, which is why mice do not show symptoms of CF when their CFTR are given a CF mutation.

Anyway, if my lung function is not quite high enough than I will get on the Vertex 770 study, which is the potentiator. It moves the CFTR to the outside edge of the cell. I'm not sure how good it will work without the corrector to fix the CFTR at the edge of the cell, but you never know.

Anyway, I can only discuss this until I sign up for a drug study, which may be as early as August 4, so let me know if you have any questions. Lots of luck choosing the right clinical trial for you.
 

Jeana

New member
I was on the inhaled Aztreonam study. I actually had the Aztreonam and not the placebo. I can't remember how long I was on it when it happened, but eventually Psuedomonas know longer showed up in my culture. After this had happened twice, my CF doc took me off of the Aztreonam. I was PA free for about a year and a half and then the PA made another appearance. This was after having PA for at least 10 years straight every culture. Anyway, when at the time the PA reappeared, I was trying to get pregnant and unable to get back on the study. At the present time I can't get back on the study because they are excluding anyone who has had reactions to inhaled antibiotics and I have severe reactions to TOBI.

So, what is my next clinical trial? Well, I will either be in the Denufasol study, my top pick, if my lung function is at a 75% or better. The way they calculate the FEV1 is slightly different than my CF doc's, so in May of this year, I was at a 77% by this drug study's calculations. I'm hoping to make it. Denufasol provides an alternate chloride channel, kind of like mice have, which is why mice do not show symptoms of CF when their CFTR are given a CF mutation.

Anyway, if my lung function is not quite high enough than I will get on the Vertex 770 study, which is the potentiator. It moves the CFTR to the outside edge of the cell. I'm not sure how good it will work without the corrector to fix the CFTR at the edge of the cell, but you never know.

Anyway, I can only discuss this until I sign up for a drug study, which may be as early as August 4, so let me know if you have any questions. Lots of luck choosing the right clinical trial for you.
 

Jeana

New member
I was on the inhaled Aztreonam study. I actually had the Aztreonam and not the placebo. I can't remember how long I was on it when it happened, but eventually Psuedomonas know longer showed up in my culture. After this had happened twice, my CF doc took me off of the Aztreonam. I was PA free for about a year and a half and then the PA made another appearance. This was after having PA for at least 10 years straight every culture. Anyway, when at the time the PA reappeared, I was trying to get pregnant and unable to get back on the study. At the present time I can't get back on the study because they are excluding anyone who has had reactions to inhaled antibiotics and I have severe reactions to TOBI.

So, what is my next clinical trial? Well, I will either be in the Denufasol study, my top pick, if my lung function is at a 75% or better. The way they calculate the FEV1 is slightly different than my CF doc's, so in May of this year, I was at a 77% by this drug study's calculations. I'm hoping to make it. Denufasol provides an alternate chloride channel, kind of like mice have, which is why mice do not show symptoms of CF when their CFTR are given a CF mutation.

Anyway, if my lung function is not quite high enough than I will get on the Vertex 770 study, which is the potentiator. It moves the CFTR to the outside edge of the cell. I'm not sure how good it will work without the corrector to fix the CFTR at the edge of the cell, but you never know.

Anyway, I can only discuss this until I sign up for a drug study, which may be as early as August 4, so let me know if you have any questions. Lots of luck choosing the right clinical trial for you.
 

Jeana

New member
I was on the inhaled Aztreonam study. I actually had the Aztreonam and not the placebo. I can't remember how long I was on it when it happened, but eventually Psuedomonas know longer showed up in my culture. After this had happened twice, my CF doc took me off of the Aztreonam. I was PA free for about a year and a half and then the PA made another appearance. This was after having PA for at least 10 years straight every culture. Anyway, when at the time the PA reappeared, I was trying to get pregnant and unable to get back on the study. At the present time I can't get back on the study because they are excluding anyone who has had reactions to inhaled antibiotics and I have severe reactions to TOBI.
<br />
<br />So, what is my next clinical trial? Well, I will either be in the Denufasol study, my top pick, if my lung function is at a 75% or better. The way they calculate the FEV1 is slightly different than my CF doc's, so in May of this year, I was at a 77% by this drug study's calculations. I'm hoping to make it. Denufasol provides an alternate chloride channel, kind of like mice have, which is why mice do not show symptoms of CF when their CFTR are given a CF mutation.
<br />
<br />Anyway, if my lung function is not quite high enough than I will get on the Vertex 770 study, which is the potentiator. It moves the CFTR to the outside edge of the cell. I'm not sure how good it will work without the corrector to fix the CFTR at the edge of the cell, but you never know.
<br />
<br />Anyway, I can only discuss this until I sign up for a drug study, which may be as early as August 4, so let me know if you have any questions. Lots of luck choosing the right clinical trial for you.
 

RonnieSharpe

New member
The Aztreonam study is the one I'm taking a good hard look at...I've heard from multiple people that they felt really good during that study and that certainly sounds like a train I want to hop on.

Ronnie
 

RonnieSharpe

New member
The Aztreonam study is the one I'm taking a good hard look at...I've heard from multiple people that they felt really good during that study and that certainly sounds like a train I want to hop on.

Ronnie
 

RonnieSharpe

New member
The Aztreonam study is the one I'm taking a good hard look at...I've heard from multiple people that they felt really good during that study and that certainly sounds like a train I want to hop on.

Ronnie
 

RonnieSharpe

New member
The Aztreonam study is the one I'm taking a good hard look at...I've heard from multiple people that they felt really good during that study and that certainly sounds like a train I want to hop on.

Ronnie
 

RonnieSharpe

New member
The Aztreonam study is the one I'm taking a good hard look at...I've heard from multiple people that they felt really good during that study and that certainly sounds like a train I want to hop on.
<br />
<br />Ronnie
 
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