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How can you tell Pulmozyme helps you?
- Thread starter Kristen
- Start date
Whenever we add something to our regimen we should do a mini study as Warwick recommends. Document how much sputum comes up, changes in color to sputum, exercise tolerance, cough frequency, sleep quality, ablity to clear your lungs with less (hard) coughing.
Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
Whenever we add something to our regimen we should do a mini study as Warwick recommends. Document how much sputum comes up, changes in color to sputum, exercise tolerance, cough frequency, sleep quality, ablity to clear your lungs with less (hard) coughing.
Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
Whenever we add something to our regimen we should do a mini study as Warwick recommends. Document how much sputum comes up, changes in color to sputum, exercise tolerance, cough frequency, sleep quality, ablity to clear your lungs with less (hard) coughing.
<br />
<br />Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
<br />
<br />Like Andrew, I'm not sure I saw a benefit from Pulmozyme. I was part of the generation who was put on it and doctors never questioned if it was helping because it was the new big cf drug. Now, I believe in the PI it explains that up to 30% (from memory could be more or less) of the cf population doesn't respond. I have been off of Pulmozyme for 18 months and have not seen a huge difference in lung function but I no longer have hemoptysis. And when I would start Pulmozyme after a hyatis I would bleed. If we could get passed the bleeding I would consent to doing a 2 wk trial to see if it brought about any benefits.
mamaScarlett
Active member
I notice bc if I run out for a few days I produce alot more mucus and feel heavy in my lungs.<br>
mamaScarlett
Active member
I notice bc if I run out for a few days I produce alot more mucus and feel heavy in my lungs.<br>
mamaScarlett
Active member
I notice bc if I run out for a few days I produce alot more mucus and feel heavy in my lungs.<br>
W
windex125
Guest
I refer to Pulmozyme as my liquid gold. it has made the biggest chg. for me I've been on it since it came out I think that was early 90's (if someone knows the exact yr let me know) it thins my mucus and I have not had a plug in years. I swear by it. But we all have different issues with this disease and mine is really bad lungs actually I am living on only one functioning lung the other is so diseased it does not show up on xray anymore. But also have severe bronchectasis, and MAC which we know it resistant to so many drugs. When and if I having blood streaking I do stop it for a few days. I've only had one bad bleed but it lasted for almost 6 weeks and had to give myself shots of vitamin K daily. But I have heard it causes some to bleed. Pat-56/CF
W
windex125
Guest
I refer to Pulmozyme as my liquid gold. it has made the biggest chg. for me I've been on it since it came out I think that was early 90's (if someone knows the exact yr let me know) it thins my mucus and I have not had a plug in years. I swear by it. But we all have different issues with this disease and mine is really bad lungs actually I am living on only one functioning lung the other is so diseased it does not show up on xray anymore. But also have severe bronchectasis, and MAC which we know it resistant to so many drugs. When and if I having blood streaking I do stop it for a few days. I've only had one bad bleed but it lasted for almost 6 weeks and had to give myself shots of vitamin K daily. But I have heard it causes some to bleed. Pat-56/CF
W
windex125
Guest
I refer to Pulmozyme as my liquid gold. it has made the biggest chg. for me I've been on it since it came out I think that was early 90's (if someone knows the exact yr let me know) it thins my mucus and I have not had a plug in years. I swear by it. But we all have different issues with this disease and mine is really bad lungs actually I am living on only one functioning lung the other is so diseased it does not show up on xray anymore. But also have severe bronchectasis, and MAC which we know it resistant to so many drugs. When and if I having blood streaking I do stop it for a few days. I've only had one bad bleed but it lasted for almost 6 weeks and had to give myself shots of vitamin K daily. But I have heard it causes some to bleed. Pat-56/CF
InhalingHope
New member
Some people don't notice a big difference when using pulmozyme, but for me it is ESSENTIAL! I do pulmo twice a day and if I miss even one treatment I notice an immense difference in my sputum. It is so much thicker and much harder to cough out. It is actually my favorite med. But as you know all CFers are not created equal so I would try it for a few months and if you don't see a difference then you can re-evaluate.
InhalingHope
New member
Some people don't notice a big difference when using pulmozyme, but for me it is ESSENTIAL! I do pulmo twice a day and if I miss even one treatment I notice an immense difference in my sputum. It is so much thicker and much harder to cough out. It is actually my favorite med. But as you know all CFers are not created equal so I would try it for a few months and if you don't see a difference then you can re-evaluate.
InhalingHope
New member
Some people don't notice a big difference when using pulmozyme, but for me it is ESSENTIAL! I do pulmo twice a day and if I miss even one treatment I notice an immense difference in my sputum. It is so much thicker and much harder to cough out. It is actually my favorite med. But as you know all CFers are not created equal so I would try it for a few months and if you don't see a difference then you can re-evaluate.
<P>My daughter is 6 and has been on it for about 6mnths and it to gave her an increase of about 10-15% lung function. As for her, she doesn't feel any different since being on it and we have not noticed an increase in mucus clearence and/or production.</P>
<P>Hope that helps, somewhat!!!</P>
<P>Hope that helps, somewhat!!!</P>
<P>My daughter is 6 and has been on it for about 6mnths and it to gave her an increase of about 10-15% lung function. As for her, she doesn't feel any different since being on it and we have not noticed an increase in mucus clearence and/or production.</P>
<P>Hope that helps, somewhat!!!</P>
<P>Hope that helps, somewhat!!!</P>
<P><BR>My daughter is 6 and has been on it for about 6mnths and it to gave her an increase of about 10-15% lung function. As for her, she doesn't feel any different since being on it and we have not noticed an increase in mucus clearence and/or production.</P>
<P>Hope that helps, somewhat!!!</P>
<P>Hope that helps, somewhat!!!</P>