Help me understand??

M

mneville

Guest
I am trying to figure out how these new drugs, particularly VX770 and 809 will work? If they fix the chloride transition channels, does that mean our kids will no longer make that thick mucus?? Which means they will no longer culture nasty bacteria?? What happens if our kids are already colonized with something?

If these meds work, is the VEST and airway clearance no longer necessary??

megan
 
M

mneville

Guest
I am trying to figure out how these new drugs, particularly VX770 and 809 will work? If they fix the chloride transition channels, does that mean our kids will no longer make that thick mucus?? Which means they will no longer culture nasty bacteria?? What happens if our kids are already colonized with something?

If these meds work, is the VEST and airway clearance no longer necessary??

megan
 
M

mneville

Guest
I am trying to figure out how these new drugs, particularly VX770 and 809 will work? If they fix the chloride transition channels, does that mean our kids will no longer make that thick mucus?? Which means they will no longer culture nasty bacteria?? What happens if our kids are already colonized with something?

If these meds work, is the VEST and airway clearance no longer necessary??

megan
 
M

mneville

Guest
I am trying to figure out how these new drugs, particularly VX770 and 809 will work? If they fix the chloride transition channels, does that mean our kids will no longer make that thick mucus?? Which means they will no longer culture nasty bacteria?? What happens if our kids are already colonized with something?

If these meds work, is the VEST and airway clearance no longer necessary??

megan
 
M

mneville

Guest
I am trying to figure out how these new drugs, particularly VX770 and 809 will work? If they fix the chloride transition channels, does that mean our kids will no longer make that thick mucus?? Which means they will no longer culture nasty bacteria?? What happens if our kids are already colonized with something?
<br />
<br />If these meds work, is the VEST and airway clearance no longer necessary??
<br />
<br />megan
 
C

ChevyZ71

New member
From what I understand from my Dr about it(who helped develope it) He told me that you will still make mucus but not in the large quintity and not as thick. And no you will not have to do airway clearance, Im sure they will recomend it but I do not think it will be a must have. But you will still have to take enzymes for the rest of you life as the pancrease is gone now and they can not change what has already happend to it.
 
C

ChevyZ71

New member
From what I understand from my Dr about it(who helped develope it) He told me that you will still make mucus but not in the large quintity and not as thick. And no you will not have to do airway clearance, Im sure they will recomend it but I do not think it will be a must have. But you will still have to take enzymes for the rest of you life as the pancrease is gone now and they can not change what has already happend to it.
 
C

ChevyZ71

New member
From what I understand from my Dr about it(who helped develope it) He told me that you will still make mucus but not in the large quintity and not as thick. And no you will not have to do airway clearance, Im sure they will recomend it but I do not think it will be a must have. But you will still have to take enzymes for the rest of you life as the pancrease is gone now and they can not change what has already happend to it.
 
C

ChevyZ71

New member
From what I understand from my Dr about it(who helped develope it) He told me that you will still make mucus but not in the large quintity and not as thick. And no you will not have to do airway clearance, Im sure they will recomend it but I do not think it will be a must have. But you will still have to take enzymes for the rest of you life as the pancrease is gone now and they can not change what has already happend to it.
 
C

ChevyZ71

New member
From what I understand from my Dr about it(who helped develope it) He told me that you will still make mucus but not in the large quintity and not as thick. And no you will not have to do airway clearance, Im sure they will recomend it but I do not think it will be a must have. But you will still have to take enzymes for the rest of you life as the pancrease is gone now and they can not change what has already happend to it.
 
S

saveferris2009

New member
This isn't going to be an answer you'll like, but...


No one knows. Drugs are developed in a lab, and tested in humans first to make sure they don't harm them in obvious ways.

Phase III trials are mostly efficacy trials, meaning that the primary reason they're conducted is to see how / if the drug works. Side effect data are collected as well, but this is really the 1st phase in which efficacy is seen in humans.

Since VX 770 just entered Phase III and VX 809 is in Phase II, no one knows how the drugs will work. The scenario you presented is possible, but maybe not. No one knows....

Take care
 
S

saveferris2009

New member
This isn't going to be an answer you'll like, but...


No one knows. Drugs are developed in a lab, and tested in humans first to make sure they don't harm them in obvious ways.

Phase III trials are mostly efficacy trials, meaning that the primary reason they're conducted is to see how / if the drug works. Side effect data are collected as well, but this is really the 1st phase in which efficacy is seen in humans.

Since VX 770 just entered Phase III and VX 809 is in Phase II, no one knows how the drugs will work. The scenario you presented is possible, but maybe not. No one knows....

Take care
 
S

saveferris2009

New member
This isn't going to be an answer you'll like, but...


No one knows. Drugs are developed in a lab, and tested in humans first to make sure they don't harm them in obvious ways.

Phase III trials are mostly efficacy trials, meaning that the primary reason they're conducted is to see how / if the drug works. Side effect data are collected as well, but this is really the 1st phase in which efficacy is seen in humans.

Since VX 770 just entered Phase III and VX 809 is in Phase II, no one knows how the drugs will work. The scenario you presented is possible, but maybe not. No one knows....

Take care
 
S

saveferris2009

New member
This isn't going to be an answer you'll like, but...


No one knows. Drugs are developed in a lab, and tested in humans first to make sure they don't harm them in obvious ways.

Phase III trials are mostly efficacy trials, meaning that the primary reason they're conducted is to see how / if the drug works. Side effect data are collected as well, but this is really the 1st phase in which efficacy is seen in humans.

Since VX 770 just entered Phase III and VX 809 is in Phase II, no one knows how the drugs will work. The scenario you presented is possible, but maybe not. No one knows....

Take care
 
S

saveferris2009

New member
This isn't going to be an answer you'll like, but...
<br />
<br />
<br />No one knows. Drugs are developed in a lab, and tested in humans first to make sure they don't harm them in obvious ways.
<br />
<br />Phase III trials are mostly efficacy trials, meaning that the primary reason they're conducted is to see how / if the drug works. Side effect data are collected as well, but this is really the 1st phase in which efficacy is seen in humans.
<br />
<br />Since VX 770 just entered Phase III and VX 809 is in Phase II, no one knows how the drugs will work. The scenario you presented is possible, but maybe not. No one knows....
<br />
<br />Take care
 
M

Mommafirst

Guest
NOt to drag this totally in the wrong direction, but even if these drugs do fix the channels and lower the creation of sticky mucous/inflamation/bacteria cultures, it would seem to me to be severely irresponsible for any doctor to encourage CF patients to STOP all CF care like airway clearance or nebs, because there will be NO long term data -- no knoweldge of whether the efficacy will remain for 50 years, or only work for 3. There will be no information of the long term side effects either.

If these work it will be amazing and a different generation of CFers will have a whole new way to view the disease, but it seems unlikely that these drugs will revolutionize the way that today's CFers spend their days.
 
M

Mommafirst

Guest
NOt to drag this totally in the wrong direction, but even if these drugs do fix the channels and lower the creation of sticky mucous/inflamation/bacteria cultures, it would seem to me to be severely irresponsible for any doctor to encourage CF patients to STOP all CF care like airway clearance or nebs, because there will be NO long term data -- no knoweldge of whether the efficacy will remain for 50 years, or only work for 3. There will be no information of the long term side effects either.

If these work it will be amazing and a different generation of CFers will have a whole new way to view the disease, but it seems unlikely that these drugs will revolutionize the way that today's CFers spend their days.
 
M

Mommafirst

Guest
NOt to drag this totally in the wrong direction, but even if these drugs do fix the channels and lower the creation of sticky mucous/inflamation/bacteria cultures, it would seem to me to be severely irresponsible for any doctor to encourage CF patients to STOP all CF care like airway clearance or nebs, because there will be NO long term data -- no knoweldge of whether the efficacy will remain for 50 years, or only work for 3. There will be no information of the long term side effects either.

If these work it will be amazing and a different generation of CFers will have a whole new way to view the disease, but it seems unlikely that these drugs will revolutionize the way that today's CFers spend their days.
 
M

Mommafirst

Guest
NOt to drag this totally in the wrong direction, but even if these drugs do fix the channels and lower the creation of sticky mucous/inflamation/bacteria cultures, it would seem to me to be severely irresponsible for any doctor to encourage CF patients to STOP all CF care like airway clearance or nebs, because there will be NO long term data -- no knoweldge of whether the efficacy will remain for 50 years, or only work for 3. There will be no information of the long term side effects either.

If these work it will be amazing and a different generation of CFers will have a whole new way to view the disease, but it seems unlikely that these drugs will revolutionize the way that today's CFers spend their days.
 
M

Mommafirst

Guest
NOt to drag this totally in the wrong direction, but even if these drugs do fix the channels and lower the creation of sticky mucous/inflamation/bacteria cultures, it would seem to me to be severely irresponsible for any doctor to encourage CF patients to STOP all CF care like airway clearance or nebs, because there will be NO long term data -- no knoweldge of whether the efficacy will remain for 50 years, or only work for 3. There will be no information of the long term side effects either.
<br />
<br />If these work it will be amazing and a different generation of CFers will have a whole new way to view the disease, but it seems unlikely that these drugs will revolutionize the way that today's CFers spend their days.
 
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