Pulmozyme

Nervous1 · Nov 13, 2008

Hi Everybody,

I know there are a handful of you on these boards who have non-CF bronchiectasis such as myself. Do any of you take Pulmozyme?

I understand that it has been found quite effective for CF, but I haven't been able to find anything on the web regarding its effectiveness in non-CF bronchiectasis.

To all you CFers, the info on this board has been a life saver for me. Thanks for making me feel at home here.

----------------

female, 40+, bronchiectasis & chronic sinusitis

Nervous1 · Nov 13, 2008

Hi Everybody,

I know there are a handful of you on these boards who have non-CF bronchiectasis such as myself. Do any of you take Pulmozyme?

I understand that it has been found quite effective for CF, but I haven't been able to find anything on the web regarding its effectiveness in non-CF bronchiectasis.

To all you CFers, the info on this board has been a life saver for me. Thanks for making me feel at home here.

----------------

female, 40+, bronchiectasis & chronic sinusitis

Nervous1 · Nov 13, 2008

Hi Everybody,

I know there are a handful of you on these boards who have non-CF bronchiectasis such as myself. Do any of you take Pulmozyme?

I understand that it has been found quite effective for CF, but I haven't been able to find anything on the web regarding its effectiveness in non-CF bronchiectasis.

To all you CFers, the info on this board has been a life saver for me. Thanks for making me feel at home here.

----------------

female, 40+, bronchiectasis & chronic sinusitis

Nervous1 · Nov 13, 2008

Hi Everybody,

I know there are a handful of you on these boards who have non-CF bronchiectasis such as myself. Do any of you take Pulmozyme?

I understand that it has been found quite effective for CF, but I haven't been able to find anything on the web regarding its effectiveness in non-CF bronchiectasis.

To all you CFers, the info on this board has been a life saver for me. Thanks for making me feel at home here.

----------------

female, 40+, bronchiectasis & chronic sinusitis

Nervous1 · Nov 13, 2008

Hi Everybody,
 
 I know there are a handful of you on these boards who have non-CF bronchiectasis such as myself. Do any of you take Pulmozyme?
 
 I understand that it has been found quite effective for CF, but I haven't been able to find anything on the web regarding its effectiveness in non-CF bronchiectasis.
 
 To all you CFers, the info on this board has been a life saver for me. Thanks for making me feel at home here.
 
 ----------------
 
 female, 40+, bronchiectasis & chronic sinusitis

Nightwriter · Nov 13, 2008

I was symptomatic at 21. Eventually diagnosed with bronchiectastis. They prescribed Pulmozyme for me based on the possibility that I might have CF. And as an expereiment. I took it for years and it did nothing for me. I actually did better off of it. Some studies show for people who take it with a magnesium supplement, they get a better result. I didn't know this at the time.

Do you know for sure you don't have CF? Way back when the first mutation test was introduced, I had it done and they found only one gene. This year I had the full panel and they found the second.

Although, some people get fantastic results with Pulmozyme, I am in love with Hypertonic Saline. It helps get all the mucus out when I follow H.S. with The Flutter. Some people do H.S. and Pulmozyme. For me, H.S. does the trick.

But if you are positive that you don't have CF, Pulmozyme, also called DNase is the first drug to address anything using DNA. And it is addressing a genetic problem that CF'ers have. So that is probably why you don't see it for anything other than CF.

Nightwriter · Nov 13, 2008

I was symptomatic at 21. Eventually diagnosed with bronchiectastis. They prescribed Pulmozyme for me based on the possibility that I might have CF. And as an expereiment. I took it for years and it did nothing for me. I actually did better off of it. Some studies show for people who take it with a magnesium supplement, they get a better result. I didn't know this at the time.

Do you know for sure you don't have CF? Way back when the first mutation test was introduced, I had it done and they found only one gene. This year I had the full panel and they found the second.

Although, some people get fantastic results with Pulmozyme, I am in love with Hypertonic Saline. It helps get all the mucus out when I follow H.S. with The Flutter. Some people do H.S. and Pulmozyme. For me, H.S. does the trick.

But if you are positive that you don't have CF, Pulmozyme, also called DNase is the first drug to address anything using DNA. And it is addressing a genetic problem that CF'ers have. So that is probably why you don't see it for anything other than CF.

Nightwriter · Nov 13, 2008

I was symptomatic at 21. Eventually diagnosed with bronchiectastis. They prescribed Pulmozyme for me based on the possibility that I might have CF. And as an expereiment. I took it for years and it did nothing for me. I actually did better off of it. Some studies show for people who take it with a magnesium supplement, they get a better result. I didn't know this at the time.

Do you know for sure you don't have CF? Way back when the first mutation test was introduced, I had it done and they found only one gene. This year I had the full panel and they found the second.

Although, some people get fantastic results with Pulmozyme, I am in love with Hypertonic Saline. It helps get all the mucus out when I follow H.S. with The Flutter. Some people do H.S. and Pulmozyme. For me, H.S. does the trick.

But if you are positive that you don't have CF, Pulmozyme, also called DNase is the first drug to address anything using DNA. And it is addressing a genetic problem that CF'ers have. So that is probably why you don't see it for anything other than CF.

Nightwriter · Nov 13, 2008

I was symptomatic at 21. Eventually diagnosed with bronchiectastis. They prescribed Pulmozyme for me based on the possibility that I might have CF. And as an expereiment. I took it for years and it did nothing for me. I actually did better off of it. Some studies show for people who take it with a magnesium supplement, they get a better result. I didn't know this at the time.

Do you know for sure you don't have CF? Way back when the first mutation test was introduced, I had it done and they found only one gene. This year I had the full panel and they found the second.

Although, some people get fantastic results with Pulmozyme, I am in love with Hypertonic Saline. It helps get all the mucus out when I follow H.S. with The Flutter. Some people do H.S. and Pulmozyme. For me, H.S. does the trick.

But if you are positive that you don't have CF, Pulmozyme, also called DNase is the first drug to address anything using DNA. And it is addressing a genetic problem that CF'ers have. So that is probably why you don't see it for anything other than CF.

Nightwriter · Nov 13, 2008

I was symptomatic at 21. Eventually diagnosed with bronchiectastis. They prescribed Pulmozyme for me based on the possibility that I might have CF. And as an expereiment. I took it for years and it did nothing for me. I actually did better off of it. Some studies show for people who take it with a magnesium supplement, they get a better result. I didn't know this at the time.
 
 Do you know for sure you don't have CF? Way back when the first mutation test was introduced, I had it done and they found only one gene. This year I had the full panel and they found the second.
 
 Although, some people get fantastic results with Pulmozyme, I am in love with Hypertonic Saline. It helps get all the mucus out when I follow H.S. with The Flutter. Some people do H.S. and Pulmozyme. For me, H.S. does the trick.
 
 But if you are positive that you don't have CF, Pulmozyme, also called DNase is the first drug to address anything using DNA. And it is addressing a genetic problem that CF'ers have. So that is probably why you don't see it for anything other than CF.

Nervous1 · Nov 13, 2008

Thanks for your quick reply Nightwriter!

I started H.S. a few months ago and have found a huge improvement. Much less cough, chest pressure, and shortness of breath - the first significant improvement. I credit this improvement directly to this forum, since I read about H.S. here and suggested it to my pulmo.

Despite the drastic decrease in daily symptoms, I have had 3 exaccerbations requiring oral antibiotics in the last couple of months. (Thanks goodness I haven't need IV antibiotics like so many of you.)

In answer to your question about CF, I have gotten as much testing done as I could living outside the US. That doesn't include the full Ambry panel. However, I contacted Ambry and told them my background and the genetic testing done (no mutations found on standard panel for Ashkenzi Jews), and even they admit that the chance of finding CF on their full panel was EXTREMELY small. I was also evaluated at one of the two leading CF centers where I live and they said I don't have CF.

Thanks for your explanation about Pulmozyme. As you said, it explains why I haven't seen anything about it being used in non-CF bronchiectasis treatment.

Nervous1 · Nov 13, 2008

Thanks for your quick reply Nightwriter!

I started H.S. a few months ago and have found a huge improvement. Much less cough, chest pressure, and shortness of breath - the first significant improvement. I credit this improvement directly to this forum, since I read about H.S. here and suggested it to my pulmo.

Despite the drastic decrease in daily symptoms, I have had 3 exaccerbations requiring oral antibiotics in the last couple of months. (Thanks goodness I haven't need IV antibiotics like so many of you.)

In answer to your question about CF, I have gotten as much testing done as I could living outside the US. That doesn't include the full Ambry panel. However, I contacted Ambry and told them my background and the genetic testing done (no mutations found on standard panel for Ashkenzi Jews), and even they admit that the chance of finding CF on their full panel was EXTREMELY small. I was also evaluated at one of the two leading CF centers where I live and they said I don't have CF.

Thanks for your explanation about Pulmozyme. As you said, it explains why I haven't seen anything about it being used in non-CF bronchiectasis treatment.

Nervous1 · Nov 13, 2008

Thanks for your quick reply Nightwriter!

I started H.S. a few months ago and have found a huge improvement. Much less cough, chest pressure, and shortness of breath - the first significant improvement. I credit this improvement directly to this forum, since I read about H.S. here and suggested it to my pulmo.

Despite the drastic decrease in daily symptoms, I have had 3 exaccerbations requiring oral antibiotics in the last couple of months. (Thanks goodness I haven't need IV antibiotics like so many of you.)

In answer to your question about CF, I have gotten as much testing done as I could living outside the US. That doesn't include the full Ambry panel. However, I contacted Ambry and told them my background and the genetic testing done (no mutations found on standard panel for Ashkenzi Jews), and even they admit that the chance of finding CF on their full panel was EXTREMELY small. I was also evaluated at one of the two leading CF centers where I live and they said I don't have CF.

Thanks for your explanation about Pulmozyme. As you said, it explains why I haven't seen anything about it being used in non-CF bronchiectasis treatment.

Nervous1 · Nov 13, 2008

Thanks for your quick reply Nightwriter!

I started H.S. a few months ago and have found a huge improvement. Much less cough, chest pressure, and shortness of breath - the first significant improvement. I credit this improvement directly to this forum, since I read about H.S. here and suggested it to my pulmo.

Despite the drastic decrease in daily symptoms, I have had 3 exaccerbations requiring oral antibiotics in the last couple of months. (Thanks goodness I haven't need IV antibiotics like so many of you.)

In answer to your question about CF, I have gotten as much testing done as I could living outside the US. That doesn't include the full Ambry panel. However, I contacted Ambry and told them my background and the genetic testing done (no mutations found on standard panel for Ashkenzi Jews), and even they admit that the chance of finding CF on their full panel was EXTREMELY small. I was also evaluated at one of the two leading CF centers where I live and they said I don't have CF.

Thanks for your explanation about Pulmozyme. As you said, it explains why I haven't seen anything about it being used in non-CF bronchiectasis treatment.

Nervous1 · Nov 13, 2008

Thanks for your quick reply Nightwriter!
 
 I started H.S. a few months ago and have found a huge improvement. Much less cough, chest pressure, and shortness of breath - the first significant improvement. I credit this improvement directly to this forum, since I read about H.S. here and suggested it to my pulmo.
 
 Despite the drastic decrease in daily symptoms, I have had 3 exaccerbations requiring oral antibiotics in the last couple of months. (Thanks goodness I haven't need IV antibiotics like so many of you.)
 
 In answer to your question about CF, I have gotten as much testing done as I could living outside the US. That doesn't include the full Ambry panel. However, I contacted Ambry and told them my background and the genetic testing done (no mutations found on standard panel for Ashkenzi Jews), and even they admit that the chance of finding CF on their full panel was EXTREMELY small. I was also evaluated at one of the two leading CF centers where I live and they said I don't have CF.
 
 Thanks for your explanation about Pulmozyme. As you said, it explains why I haven't seen anything about it being used in non-CF bronchiectasis treatment.

JazzysMom · Nov 13, 2008