Pulmozyme and bleeding....

[dramamama]

wow. Amy-
This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it. In a few years, I will remind you if you ever need it. Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem?

Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. I think it is interesting that many say their docs have never heard of this side effect. Just because your doctor is aware of this significant side effect does not mean other doctors are aware of it.

Let patients have a little information to "arm" themselves with as you like to say.

 

[dramamama]

wow. Amy-
This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it. In a few years, I will remind you if you ever need it. Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem?

Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. I think it is interesting that many say their docs have never heard of this side effect. Just because your doctor is aware of this significant side effect does not mean other doctors are aware of it.

Let patients have a little information to "arm" themselves with as you like to say.

 

[dramamama]

wow. Amy-
This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it. In a few years, I will remind you if you ever need it. Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem?

Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. I think it is interesting that many say their docs have never heard of this side effect. Just because your doctor is aware of this significant side effect does not mean other doctors are aware of it.

Let patients have a little information to "arm" themselves with as you like to say.

 

[dramamama]

wow. Amy-
This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it. In a few years, I will remind you if you ever need it. Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem?

Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. I think it is interesting that many say their docs have never heard of this side effect. Just because your doctor is aware of this significant side effect does not mean other doctors are aware of it.

Let patients have a little information to "arm" themselves with as you like to say.

 

[dramamama]

wow. Amy-
This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it. In a few years, I will remind you if you ever need it. Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem?

Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. I think it is interesting that many say their docs have never heard of this side effect. Just because your doctor is aware of this significant side effect does not mean other doctors are aware of it.

Let patients have a little information to "arm" themselves with as you like to say.

 

[moxie1]

Thanks for this article posting.

As I have said before in other posts, Pulmozyme definitely caused my bleeding. I am taking it now, but only once every 2-3 days. It seems to be enough to help me, but not too much that it causes bleeding.

I did try to go off of it completely, but my pfts just kept going down. After a year of no Pulmozyme, I did one dose and my pfts shot up 10%!!!! I guess it is all about finding a balance.

 

[moxie1]

Thanks for this article posting.

As I have said before in other posts, Pulmozyme definitely caused my bleeding. I am taking it now, but only once every 2-3 days. It seems to be enough to help me, but not too much that it causes bleeding.

I did try to go off of it completely, but my pfts just kept going down. After a year of no Pulmozyme, I did one dose and my pfts shot up 10%!!!! I guess it is all about finding a balance.

 

[moxie1]

Thanks for this article posting.

As I have said before in other posts, Pulmozyme definitely caused my bleeding. I am taking it now, but only once every 2-3 days. It seems to be enough to help me, but not too much that it causes bleeding.

I did try to go off of it completely, but my pfts just kept going down. After a year of no Pulmozyme, I did one dose and my pfts shot up 10%!!!! I guess it is all about finding a balance.

 

[moxie1]

Thanks for this article posting.

As I have said before in other posts, Pulmozyme definitely caused my bleeding. I am taking it now, but only once every 2-3 days. It seems to be enough to help me, but not too much that it causes bleeding.

I did try to go off of it completely, but my pfts just kept going down. After a year of no Pulmozyme, I did one dose and my pfts shot up 10%!!!! I guess it is all about finding a balance.

 

[moxie1]

Thanks for this article posting.

As I have said before in other posts, Pulmozyme definitely caused my bleeding. I am taking it now, but only once every 2-3 days. It seems to be enough to help me, but not too much that it causes bleeding.

I did try to go off of it completely, but my pfts just kept going down. After a year of no Pulmozyme, I did one dose and my pfts shot up 10%!!!! I guess it is all about finding a balance.

 

[NoExcuses]

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

wow. Amy-

This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it.

</end quote></div>

It's not that the study isn't important. I think it's important to give <i> perspective </i>. It's easy to post an alarming study and have people panic. I think it's important to put drug safety in a context.

So actually, my comments had nothing to do with me. I think it's important for people who read studies like that to understand the big picture.

<div class="FTQUOTE"><begin quote> Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem? </end quote></div>

Actually yes I have.

And I do think that this info is important, but again, context is key.



<div class="FTQUOTE"><begin quote>Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. </end quote></div>

I am not downplaying the issue just as I'm sure you would state you're not trying to cause panic. I don't understand why you are threatened by my comment.

I have had issues with many CF related medications myself, so I will be included with that gourp of "those who us who do have issue with some cf related medications.



<div class="FTQUOTE"><begin quote>Let patients have a little information to "arm" themselves with as you like to say.</end quote></div>

Absolutely. I will arm them with perspective on medication safety as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

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

wow. Amy-

This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it.

</end quote></div>

It's not that the study isn't important. I think it's important to give <i> perspective </i>. It's easy to post an alarming study and have people panic. I think it's important to put drug safety in a context.

So actually, my comments had nothing to do with me. I think it's important for people who read studies like that to understand the big picture.

<div class="FTQUOTE"><begin quote> Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem? </end quote></div>

Actually yes I have.

And I do think that this info is important, but again, context is key.



<div class="FTQUOTE"><begin quote>Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. </end quote></div>

I am not downplaying the issue just as I'm sure you would state you're not trying to cause panic. I don't understand why you are threatened by my comment.

I have had issues with many CF related medications myself, so I will be included with that gourp of "those who us who do have issue with some cf related medications.



<div class="FTQUOTE"><begin quote>Let patients have a little information to "arm" themselves with as you like to say.</end quote></div>

Absolutely. I will arm them with perspective on medication safety as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

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

wow. Amy-

This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it.

</end quote></div>

It's not that the study isn't important. I think it's important to give <i> perspective </i>. It's easy to post an alarming study and have people panic. I think it's important to put drug safety in a context.

So actually, my comments had nothing to do with me. I think it's important for people who read studies like that to understand the big picture.

<div class="FTQUOTE"><begin quote> Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem? </end quote></div>

Actually yes I have.

And I do think that this info is important, but again, context is key.



<div class="FTQUOTE"><begin quote>Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. </end quote></div>

I am not downplaying the issue just as I'm sure you would state you're not trying to cause panic. I don't understand why you are threatened by my comment.

I have had issues with many CF related medications myself, so I will be included with that gourp of "those who us who do have issue with some cf related medications.



<div class="FTQUOTE"><begin quote>Let patients have a little information to "arm" themselves with as you like to say.</end quote></div>

Absolutely. I will arm them with perspective on medication safety as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

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

wow. Amy-

This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it.

</end quote>

It's not that the study isn't important. I think it's important to give <i> perspective </i>. It's easy to post an alarming study and have people panic. I think it's important to put drug safety in a context.

So actually, my comments had nothing to do with me. I think it's important for people who read studies like that to understand the big picture.

<div class="FTQUOTE"><begin quote> Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem? </end quote>

Actually yes I have.

And I do think that this info is important, but again, context is key.



<div class="FTQUOTE"><begin quote>Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. </end quote>

I am not downplaying the issue just as I'm sure you would state you're not trying to cause panic. I don't understand why you are threatened by my comment.

I have had issues with many CF related medications myself, so I will be included with that gourp of "those who us who do have issue with some cf related medications.



<div class="FTQUOTE"><begin quote>Let patients have a little information to "arm" themselves with as you like to say.</end quote>

Absolutely. I will arm them with perspective on medication safety as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

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

wow. Amy-

This is a thread in response to those who have issues with Pulmozyme. As it is not important to you at this juncture, just ignore it.

</end quote>

It's not that the study isn't important. I think it's important to give <i> perspective </i>. It's easy to post an alarming study and have people panic. I think it's important to put drug safety in a context.

So actually, my comments had nothing to do with me. I think it's important for people who read studies like that to understand the big picture.

<div class="FTQUOTE"><begin quote> Also, I see that you do suffer from hemoptysis in your description of yourself... interesting. Have you ever gone off of it to see if that is the cause of your problem? </end quote>

Actually yes I have.

And I do think that this info is important, but again, context is key.



<div class="FTQUOTE"><begin quote>Anyway, please don't down play a very important study that is very important to those of us who do have issues with some cf related medications. </end quote>

I am not downplaying the issue just as I'm sure you would state you're not trying to cause panic. I don't understand why you are threatened by my comment.

I have had issues with many CF related medications myself, so I will be included with that gourp of "those who us who do have issue with some cf related medications.



<div class="FTQUOTE"><begin quote>Let patients have a little information to "arm" themselves with as you like to say.</end quote>

Absolutely. I will arm them with perspective on medication safety as well. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

It's interesting for me to read this because I certainly haven't heard of it. I'm also suprised (and a bit saddened) that a drug that held so much promise is now the culprit for so many cases of hempotysis.

Personally, I've had no problems with Pulmozyme, and if I miss a single dose I can really tell. In the future though, if I have problems, I'll make sure to examine Pulmo as a cause - I definitely wouldn't have thought it could cause hemoptysis before reading all your replies and this article. Thanks for the read and the info. <img src="">

Edit: NoExcuses, I don't think posting this will cause a panic.. it's just a timely article since people were discussing the link between pulmo and bleeds. I certainly didn't read this and think "OH no, I'm going to stop taking it right this minute!!" We've all shared enough stories to know what makes one person horribly sick, is another person's lifesaver. Information about WHY we got horribly sick is always quite welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

It's interesting for me to read this because I certainly haven't heard of it. I'm also suprised (and a bit saddened) that a drug that held so much promise is now the culprit for so many cases of hempotysis.

Personally, I've had no problems with Pulmozyme, and if I miss a single dose I can really tell. In the future though, if I have problems, I'll make sure to examine Pulmo as a cause - I definitely wouldn't have thought it could cause hemoptysis before reading all your replies and this article. Thanks for the read and the info. <img src="">

Edit: NoExcuses, I don't think posting this will cause a panic.. it's just a timely article since people were discussing the link between pulmo and bleeds. I certainly didn't read this and think "OH no, I'm going to stop taking it right this minute!!" We've all shared enough stories to know what makes one person horribly sick, is another person's lifesaver. Information about WHY we got horribly sick is always quite welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

It's interesting for me to read this because I certainly haven't heard of it. I'm also suprised (and a bit saddened) that a drug that held so much promise is now the culprit for so many cases of hempotysis.

Personally, I've had no problems with Pulmozyme, and if I miss a single dose I can really tell. In the future though, if I have problems, I'll make sure to examine Pulmo as a cause - I definitely wouldn't have thought it could cause hemoptysis before reading all your replies and this article. Thanks for the read and the info. <img src="">

Edit: NoExcuses, I don't think posting this will cause a panic.. it's just a timely article since people were discussing the link between pulmo and bleeds. I certainly didn't read this and think "OH no, I'm going to stop taking it right this minute!!" We've all shared enough stories to know what makes one person horribly sick, is another person's lifesaver. Information about WHY we got horribly sick is always quite welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

It's interesting for me to read this because I certainly haven't heard of it. I'm also suprised (and a bit saddened) that a drug that held so much promise is now the culprit for so many cases of hempotysis.

Personally, I've had no problems with Pulmozyme, and if I miss a single dose I can really tell. In the future though, if I have problems, I'll make sure to examine Pulmo as a cause - I definitely wouldn't have thought it could cause hemoptysis before reading all your replies and this article. Thanks for the read and the info. <img src="">

Edit: NoExcuses, I don't think posting this will cause a panic.. it's just a timely article since people were discussing the link between pulmo and bleeds. I certainly didn't read this and think "OH no, I'm going to stop taking it right this minute!!" We've all shared enough stories to know what makes one person horribly sick, is another person's lifesaver. Information about WHY we got horribly sick is always quite welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Sevenstars]

It's interesting for me to read this because I certainly haven't heard of it. I'm also suprised (and a bit saddened) that a drug that held so much promise is now the culprit for so many cases of hempotysis.

Personally, I've had no problems with Pulmozyme, and if I miss a single dose I can really tell. In the future though, if I have problems, I'll make sure to examine Pulmo as a cause - I definitely wouldn't have thought it could cause hemoptysis before reading all your replies and this article. Thanks for the read and the info. <img src="">

Edit: NoExcuses, I don't think posting this will cause a panic.. it's just a timely article since people were discussing the link between pulmo and bleeds. I certainly didn't read this and think "OH no, I'm going to stop taking it right this minute!!" We've all shared enough stories to know what makes one person horribly sick, is another person's lifesaver. Information about WHY we got horribly sick is always quite welcome. <img src="i/expressions/face-icon-small-smile.gif" border="0">