Denufosol Trial

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[dramamama]

Hey guys-
Just wanted to now if any of you are on the denufosol trial?? Exciting news coming down the pike from several people....

Increases in pfts on the drug are unbelievable (as much as 30%) and there is evidence to suggest it can efflux glutathione into the extracellular lung space!!!!

I really want to hear from those who are on it. Although it is double blind, apparently there is no debating who is and who is not on the drug.

Please let us know.

mandy

Hi I just wanted to edit this and make sure all understand what denufosol does. It does not correct the cftr channel but instead creates a new channel which allows for normal efflux of salt, water, and yes, glutathione (they think).

<b>Denufosol tetrasodium is a selective P2Y2 agonist designed to enhance the lung's innate mucosal hydration and mucociliary clearance mechanisms by activating an alternative ion channel that acts in the same way as the defective ion channel normally would in moving salt and water to the surface of the airways.


This is a critical development for CF patients and could represent an entirely new way to correct the basic defect in cells that line the airways, said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.</b>

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[rAnDiMKdir]

Hey Mandy!

I'm on the trial as well. Not a huge increase in my PFTs yet. It's my 3rd month on study drug. Maybe I have the stinkin placebo but I'll get the real thing in a couple months!

Does your study drug have a taste?

-Randi

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[dramamama]

Hi Randi-
I am not on the drug or in the study...my pfts are in the 57% range and I do not qualify. That is ok though (even though I wish i could be in it) because the healthier people are having the best results which means the drug gets approved more quickly!!!

What are your pfts if you don't mind me asking? I have spoken with several mothers who believe their kids are DEFINITELY on the drug....and doing immeasurably better. If you are not on the drug now, how amazing you will feel in the next few months when you get to be on it???!!!
I'll keep you in my thoughts and hope for the best.

mandy

 

[treehugger]

Mandy,

I am in the trial. In July I go on the drug for sure (6 months blind then 6 months on). My pfts were 90% at the beginning and are now 100%. Do I think I am on the drug? Yes-my lungs feel different-less dry, less reactive and they don't burn when I breathe hard. I didn't have much of of a cough before hand so I can't comment on that. I asked if once the 1-year study is over if we have access to the drug and they told me yes. I feel pretty excited about it. Hope it turns out to be effective. It is time consuming though. 15 min three times a day on top of everything else.

 

[treehugger]

Mandy,

I am in the trial. In July I go on the drug for sure (6 months blind then 6 months on). My pfts were 90% at the beginning and are now 100%. Do I think I am on the drug? Yes-my lungs feel different-less dry, less reactive and they don't burn when I breathe hard. I didn't have much of of a cough before hand so I can't comment on that. I asked if once the 1-year study is over if we have access to the drug and they told me yes. I feel pretty excited about it. Hope it turns out to be effective. It is time consuming though. 15 min three times a day on top of everything else.