does anyone do this?

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camperscove

New member
Luke's enrolled in ISIS, which is a blind study, so we don't know for certain if it's 7 or 3% We're fairly sure it 7%. In any case ISIS requires Pulmozyme once per day PRIOR to the study drug which is done twice per day. We usually save Pulmozyme for pm treatments. We also use separate neb cups and I was under the impression that it was because of droplet size/inhalation rate as well as infection control.
He's been on Pulmozyme for 3 years but now with the study drug we see a fairly significant increase in coughing during treatment. Which, of course, we love!!
 
C

camperscove

New member
Luke's enrolled in ISIS, which is a blind study, so we don't know for certain if it's 7 or 3% We're fairly sure it 7%. In any case ISIS requires Pulmozyme once per day PRIOR to the study drug which is done twice per day. We usually save Pulmozyme for pm treatments. We also use separate neb cups and I was under the impression that it was because of droplet size/inhalation rate as well as infection control.
He's been on Pulmozyme for 3 years but now with the study drug we see a fairly significant increase in coughing during treatment. Which, of course, we love!!
 
C

camperscove

New member
Luke's enrolled in ISIS, which is a blind study, so we don't know for certain if it's 7 or 3% We're fairly sure it 7%. In any case ISIS requires Pulmozyme once per day PRIOR to the study drug which is done twice per day. We usually save Pulmozyme for pm treatments. We also use separate neb cups and I was under the impression that it was because of droplet size/inhalation rate as well as infection control.
He's been on Pulmozyme for 3 years but now with the study drug we see a fairly significant increase in coughing during treatment. Which, of course, we love!!
 
C

camperscove

New member
Luke's enrolled in ISIS, which is a blind study, so we don't know for certain if it's 7 or 3% We're fairly sure it 7%. In any case ISIS requires Pulmozyme once per day PRIOR to the study drug which is done twice per day. We usually save Pulmozyme for pm treatments. We also use separate neb cups and I was under the impression that it was because of droplet size/inhalation rate as well as infection control.
He's been on Pulmozyme for 3 years but now with the study drug we see a fairly significant increase in coughing during treatment. Which, of course, we love!!
 
C

camperscove

New member
Luke's enrolled in ISIS, which is a blind study, so we don't know for certain if it's 7 or 3% We're fairly sure it 7%. In any case ISIS requires Pulmozyme once per day PRIOR to the study drug which is done twice per day. We usually save Pulmozyme for pm treatments. We also use separate neb cups and I was under the impression that it was because of droplet size/inhalation rate as well as infection control.
<br />He's been on Pulmozyme for 3 years but now with the study drug we see a fairly significant increase in coughing during treatment. Which, of course, we love!!
 
T

theLostMiler

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I've read somewhere here that pulmozyme is long acting (4 hours?), so that's why I do it second. And I'm one of the weird ones who needs Pulmozyme twice a day, but I'm old and have a 53% fev1...</end quote></div>

haha...

wow, what a mix of information... back when I was with my ped doctor I was told that HTS has effects lasting like 8 hours? I cant remember how many hours I was told, but I remember them saying that it worked out so that you were at your normal 'cf' lungs right around when you'd do your next treatment...

okay it was like a graph comparing the viscoisty I think of mucus of cf vs. normal...

so after 4 minutes, was when it started working, and you would be like xx amount times higher than normal people then at about 4 hours you were like half of that amount or maybe half of normal persons and then at 8 you were back at your normal line... right about when you needed your next treatment roughly...


haha! Its probably just one of those "different strokes, for different folks" (like types of airway clearance) just on preference on how well one, either or both work for you... b/c I skip pulmozyme a lot and stick w/ saline 2-4 times a day.

And my fev1 is around 40% right now :/ eeck haha you have me beat <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
T

theLostMiler

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I've read somewhere here that pulmozyme is long acting (4 hours?), so that's why I do it second. And I'm one of the weird ones who needs Pulmozyme twice a day, but I'm old and have a 53% fev1...</end quote></div>

haha...

wow, what a mix of information... back when I was with my ped doctor I was told that HTS has effects lasting like 8 hours? I cant remember how many hours I was told, but I remember them saying that it worked out so that you were at your normal 'cf' lungs right around when you'd do your next treatment...

okay it was like a graph comparing the viscoisty I think of mucus of cf vs. normal...

so after 4 minutes, was when it started working, and you would be like xx amount times higher than normal people then at about 4 hours you were like half of that amount or maybe half of normal persons and then at 8 you were back at your normal line... right about when you needed your next treatment roughly...


haha! Its probably just one of those "different strokes, for different folks" (like types of airway clearance) just on preference on how well one, either or both work for you... b/c I skip pulmozyme a lot and stick w/ saline 2-4 times a day.

And my fev1 is around 40% right now :/ eeck haha you have me beat <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
T

theLostMiler

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I've read somewhere here that pulmozyme is long acting (4 hours?), so that's why I do it second. And I'm one of the weird ones who needs Pulmozyme twice a day, but I'm old and have a 53% fev1...</end quote></div>

haha...

wow, what a mix of information... back when I was with my ped doctor I was told that HTS has effects lasting like 8 hours? I cant remember how many hours I was told, but I remember them saying that it worked out so that you were at your normal 'cf' lungs right around when you'd do your next treatment...

okay it was like a graph comparing the viscoisty I think of mucus of cf vs. normal...

so after 4 minutes, was when it started working, and you would be like xx amount times higher than normal people then at about 4 hours you were like half of that amount or maybe half of normal persons and then at 8 you were back at your normal line... right about when you needed your next treatment roughly...


haha! Its probably just one of those "different strokes, for different folks" (like types of airway clearance) just on preference on how well one, either or both work for you... b/c I skip pulmozyme a lot and stick w/ saline 2-4 times a day.

And my fev1 is around 40% right now :/ eeck haha you have me beat <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
T

theLostMiler

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>

I've read somewhere here that pulmozyme is long acting (4 hours?), so that's why I do it second. And I'm one of the weird ones who needs Pulmozyme twice a day, but I'm old and have a 53% fev1...</end quote>

haha...

wow, what a mix of information... back when I was with my ped doctor I was told that HTS has effects lasting like 8 hours? I cant remember how many hours I was told, but I remember them saying that it worked out so that you were at your normal 'cf' lungs right around when you'd do your next treatment...

okay it was like a graph comparing the viscoisty I think of mucus of cf vs. normal...

so after 4 minutes, was when it started working, and you would be like xx amount times higher than normal people then at about 4 hours you were like half of that amount or maybe half of normal persons and then at 8 you were back at your normal line... right about when you needed your next treatment roughly...


haha! Its probably just one of those "different strokes, for different folks" (like types of airway clearance) just on preference on how well one, either or both work for you... b/c I skip pulmozyme a lot and stick w/ saline 2-4 times a day.

And my fev1 is around 40% right now :/ eeck haha you have me beat <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
T

theLostMiler

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>AnD</b></i>
<br />
<br /> I've read somewhere here that pulmozyme is long acting (4 hours?), so that's why I do it second. And I'm one of the weird ones who needs Pulmozyme twice a day, but I'm old and have a 53% fev1...</end quote>
<br />
<br />haha...
<br />
<br />wow, what a mix of information... back when I was with my ped doctor I was told that HTS has effects lasting like 8 hours? I cant remember how many hours I was told, but I remember them saying that it worked out so that you were at your normal 'cf' lungs right around when you'd do your next treatment...
<br />
<br />okay it was like a graph comparing the viscoisty I think of mucus of cf vs. normal...
<br />
<br />so after 4 minutes, was when it started working, and you would be like xx amount times higher than normal people then at about 4 hours you were like half of that amount or maybe half of normal persons and then at 8 you were back at your normal line... right about when you needed your next treatment roughly...
<br />
<br />
<br />haha! Its probably just one of those "different strokes, for different folks" (like types of airway clearance) just on preference on how well one, either or both work for you... b/c I skip pulmozyme a lot and stick w/ saline 2-4 times a day.
<br />
<br />And my fev1 is around 40% right now :/ eeck haha you have me beat <img src="i/expressions/face-icon-small-wink.gif" border="0">
<br />
<br />
 
C

crickit715

New member
isnt it crazy how many different answers we get for the same simple question like: what order do we take our meds in....or should we use the same neb cup? !!!! ..... well heres our 2cents worth..my daughter is also in isis trial and we were told to do her xoepenex, then trial med, then pulmozyme (in that order) and also, never ever to use the same neb cups for different inhaled meds. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
isnt it crazy how many different answers we get for the same simple question like: what order do we take our meds in....or should we use the same neb cup? !!!! ..... well heres our 2cents worth..my daughter is also in isis trial and we were told to do her xoepenex, then trial med, then pulmozyme (in that order) and also, never ever to use the same neb cups for different inhaled meds. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
isnt it crazy how many different answers we get for the same simple question like: what order do we take our meds in....or should we use the same neb cup? !!!! ..... well heres our 2cents worth..my daughter is also in isis trial and we were told to do her xoepenex, then trial med, then pulmozyme (in that order) and also, never ever to use the same neb cups for different inhaled meds. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
isnt it crazy how many different answers we get for the same simple question like: what order do we take our meds in....or should we use the same neb cup? !!!! ..... well heres our 2cents worth..my daughter is also in isis trial and we were told to do her xoepenex, then trial med, then pulmozyme (in that order) and also, never ever to use the same neb cups for different inhaled meds. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

crickit715

New member
isnt it crazy how many different answers we get for the same simple question like: what order do we take our meds in....or should we use the same neb cup? !!!! ..... well heres our 2cents worth..my daughter is also in isis trial and we were told to do her xoepenex, then trial med, then pulmozyme (in that order) and also, never ever to use the same neb cups for different inhaled meds. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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