At clinic the other week I asked my doctor why I wasn't on Pulmozyme. He said it was a quality of life thing - that, because I'm not a big sputum producer (i.e. I don't have much to thin - I cough something up like once every few weeks), the benefit may not outweigh the time it takes to neb the medicine. However, he said it certainly wouldn't hurt me to try it. And I wanted to because, although I don't cough stuff up to spit it, I certainly do have a chronic "wet" cough and lots of post nasal drip. <br><br>So, now I am taking it, and I am wondering how I am going to be able to tell it is helping. Do you notice you cough stuff up more easily?<br>
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How can you tell Pulmozyme helps you?
- Thread starter Kristen
- Start date
At clinic the other week I asked my doctor why I wasn't on Pulmozyme. He said it was a quality of life thing - that, because I'm not a big sputum producer (i.e. I don't have much to thin - I cough something up like once every few weeks), the benefit may not outweigh the time it takes to neb the medicine. However, he said it certainly wouldn't hurt me to try it. And I wanted to because, although I don't cough stuff up to spit it, I certainly do have a chronic "wet" cough and lots of post nasal drip. <br><br>So, now I am taking it, and I am wondering how I am going to be able to tell it is helping. Do you notice you cough stuff up more easily?<br>
At clinic the other week I asked my doctor why I wasn't on Pulmozyme. He said it was a quality of life thing - that, because I'm not a big sputum producer (i.e. I don't have much to thin - I cough something up like once every few weeks), the benefit may not outweigh the time it takes to neb the medicine. However, he said it certainly wouldn't hurt me to try it. And I wanted to because, although I don't cough stuff up to spit it, I certainly do have a chronic "wet" cough and lots of post nasal drip. <br><br>So, now I am taking it, and I am wondering how I am going to be able to tell it is helping. Do you notice you cough stuff up more easily?<br>
I think that is a strange answer your doc gave you. I guess it depends on which doc you speak to; but I know some CF docs like to use Pulmozyme as "preventative" to break up those strands of DNA to cough up.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
I think that is a strange answer your doc gave you. I guess it depends on which doc you speak to; but I know some CF docs like to use Pulmozyme as "preventative" to break up those strands of DNA to cough up.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
I think that is a strange answer your doc gave you. I guess it depends on which doc you speak to; but I know some CF docs like to use Pulmozyme as "preventative" to break up those strands of DNA to cough up.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
<br>
<br>As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. Now cost is another story; Pulmozyme is a VERY expensive drug so maybe that is the issue?
<br>
<br>Now my daughter is fairly young; started Pulmozyme at age 2 1/2. I never really noticed much benefit from it until recently; after a bad exacerbation this year we moved her Pulmozyme to the last neb right before bed and I feel like it broke up the residual mucus after her excerbation; she's 8 and half year old now.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote></div><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote></div><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
As far as time; I would say with a good compressor; Pulmozyme nebulizes really quick like 7 minutes. </end quote><br><br>Yeah, I was really surprised by how quick it was. I thought it was going take like 20 minutes.<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote></div><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote></div><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Giggles</b></i>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
i know it works cause when I forgot numerous years ago on a vacation and therefore did not do it for a week, boy did I notice a difference.</end quote><br><br>What is the difference you notice? I believe it works for people, I'm just trying to get an idea of what to "look for"<br>
T
TonyaH
Guest
<P>Our experience has been a little different. Andrew has been on pulmozyme for 8 years..since he was 5. I have never noticed that Pulmozyme does anything for him.</P>
<P> </P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P> </P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P> </P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P> </P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!</P>
<P> </P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P> </P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P> </P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P> </P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!</P>
T
TonyaH
Guest
<P>Our experience has been a little different. Andrew has been on pulmozyme for 8 years..since he was 5. I have never noticed that Pulmozyme does anything for him.</P>
<P></P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P></P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P></P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P></P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!</P>
<P></P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P></P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P></P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P></P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!</P>
T
TonyaH
Guest
<P>Our experience has been a little different. Andrew has been on pulmozyme for 8 years..since he was 5. I have never noticed that Pulmozyme does anything for him.</P>
<P></P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P></P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P></P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P></P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!<BR></P>
<P></P>
<P>The reason I say this is that once he started hypertonic saline I noticed a HUGE difference in what and how much he was able to cough up. Pulmozyme never had that affect on him. And once he had to stop HTS for two weeks for a research study he was doing. During the time he was off the HTS he became very congested, coughed hardly anything up. But once he had his first dose of HTS the junk that came out of his lungs was amazing. I could not believe how much just kept coming, and coming, and coming..and it was dark and thick..not thinned out like it's supposed to be since he had never stopped the pulmozyme. </P>
<P></P>
<P>Honestly, if it were MY CF and MY body, I would have stopped taking pulmozyme a long time ago. I just don't think it works for Andrew. The only reason I keep him on it is because the doctors recommend it, and I never want to look back and say I made a mistake, or took a chance with Andrew's body. When he gets older it will be his choice if he wants to stop it. </P>
<P></P>
<P>But boy, it sure hurts to pay that $250 copay every month on a med that doesn't seem to do anything for him.</P>
<P></P>
<P>I know Pulmozyme works very well for many many people. Just not for Andrew. Good luck! I hope you notice a difference!<BR></P>