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Pulmozyme Question

L

Landy

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

So, they bronched me and found out I had absolutely nothing down there only a few little things that looked like "dried boogies"...my docs words. Come to find out, I did not need pulmozyme...there was nothing for the drug to digest except for my lung tissue. That is why I had fever, lung pain, bleeding at this point in my life.....without pulmozyme I was healthy as a horse.</end quote></div>

This is my story too, to a point. I do have lung damage, but am not much of a mucus producer by CF standards. I do cough, don't get me wrong, but not maybe 1-3 times an hour???
Anyway, of course my doctor put me on Pulmozyme right away when it was introduced and the video that came with it showed an example of scissors cutting out layers of mucus from the lungs. I remember thinking, well, there's not much mucus to cut away, so I wondered...what happens then?
Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.
So I see your point, if people just don't have much mucus, then I have to wonder if Pulmozyme is right for them? Which is what your doctor said too, if I understood right.
So in my case, there was too much preventative treatment.
 
B

blindhearted

New member
I am on Pulmozyme twice a day. I have been on it since it was out. I was in my teens, I believe, when it came out. I have always had lung issues. It seems to be a good drug. I think docs should take a patient's individual state with the disease when prescribing treatment, even though it is preventative treatment. Like each case of CF is different, a patient's needs and reaction to mediciation is different.
 
B

blindhearted

New member
I am on Pulmozyme twice a day. I have been on it since it was out. I was in my teens, I believe, when it came out. I have always had lung issues. It seems to be a good drug. I think docs should take a patient's individual state with the disease when prescribing treatment, even though it is preventative treatment. Like each case of CF is different, a patient's needs and reaction to mediciation is different.
 
B

blindhearted

New member
I am on Pulmozyme twice a day. I have been on it since it was out. I was in my teens, I believe, when it came out. I have always had lung issues. It seems to be a good drug. I think docs should take a patient's individual state with the disease when prescribing treatment, even though it is preventative treatment. Like each case of CF is different, a patient's needs and reaction to mediciation is different.
 
J

Jem

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


Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.

</end quote></div>

I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jem

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


Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.

</end quote></div>

I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Jem

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


Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.

</end quote></div>

I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

ReneeP

New member
I would suggest you read Sakasuka's blog about Dr. Warwick's take on Pulmozyme and you will see exactly why Dr. Milla does not recommend it. It is not a financial issue with them. They simply do not like Pulmozyme.

My daughters saw Dr. Milla for 4 years and he never recommended Pulmozyme (they are on it, but only because of another dr putting them on it). Dr. Milla was involved in a study that showed that Pulmozyme actually decreased FEV1 over a period of time. He favors Mucomyst over Pulmozyme. My girls are on both.

I have seriously debated (and am still debating) taking them off Pulmozyme but haven't yet made a final decision. Some people swear by Pulmozyme and some don't like it...as with anything. I just wanted to tell you why Dr. Milla doesn't recommend it... and that it is not a financial thing.

One thing to consider is that the MN clinic is the only one that I know of that does not recommend Pulmozyme at all and actually speaks against it and at the same time they are considered the best clinic in the country and definately have the highest life expenctancy in the country... (ironic?)...
 
R

ReneeP

New member
I would suggest you read Sakasuka's blog about Dr. Warwick's take on Pulmozyme and you will see exactly why Dr. Milla does not recommend it. It is not a financial issue with them. They simply do not like Pulmozyme.

My daughters saw Dr. Milla for 4 years and he never recommended Pulmozyme (they are on it, but only because of another dr putting them on it). Dr. Milla was involved in a study that showed that Pulmozyme actually decreased FEV1 over a period of time. He favors Mucomyst over Pulmozyme. My girls are on both.

I have seriously debated (and am still debating) taking them off Pulmozyme but haven't yet made a final decision. Some people swear by Pulmozyme and some don't like it...as with anything. I just wanted to tell you why Dr. Milla doesn't recommend it... and that it is not a financial thing.

One thing to consider is that the MN clinic is the only one that I know of that does not recommend Pulmozyme at all and actually speaks against it and at the same time they are considered the best clinic in the country and definately have the highest life expenctancy in the country... (ironic?)...
 
R

ReneeP

New member
I would suggest you read Sakasuka's blog about Dr. Warwick's take on Pulmozyme and you will see exactly why Dr. Milla does not recommend it. It is not a financial issue with them. They simply do not like Pulmozyme.

My daughters saw Dr. Milla for 4 years and he never recommended Pulmozyme (they are on it, but only because of another dr putting them on it). Dr. Milla was involved in a study that showed that Pulmozyme actually decreased FEV1 over a period of time. He favors Mucomyst over Pulmozyme. My girls are on both.

I have seriously debated (and am still debating) taking them off Pulmozyme but haven't yet made a final decision. Some people swear by Pulmozyme and some don't like it...as with anything. I just wanted to tell you why Dr. Milla doesn't recommend it... and that it is not a financial thing.

One thing to consider is that the MN clinic is the only one that I know of that does not recommend Pulmozyme at all and actually speaks against it and at the same time they are considered the best clinic in the country and definately have the highest life expenctancy in the country... (ironic?)...
 
R

ReneeP

New member
Sorry...I accidentally posted twice... I'm in a hotel in Ft. Worth for the girl's doctor appointments tomorrow on a wireless connection and it's not cooperating with me at all....
 
R

ReneeP

New member
Sorry...I accidentally posted twice... I'm in a hotel in Ft. Worth for the girl's doctor appointments tomorrow on a wireless connection and it's not cooperating with me at all....
 
R

ReneeP

New member
Sorry...I accidentally posted twice... I'm in a hotel in Ft. Worth for the girl's doctor appointments tomorrow on a wireless connection and it's not cooperating with me at all....
 
L

Landy

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

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



Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.
</end quote></div>



I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

When I had my first one, while on Pulmozyme, I coughed up pure blood, probably 1/4 to 1/2 of a cup. As I was rushing to the emergency room, since this had never happened to me before, I called my doctor's office & he told me that hemoptysis can be a side effect of Pulmozyme & to take quite a few days off. I did this, then tried again & here came the blood. Tried it every other day, blood again. Finally, every 3rd day seemed to work, but I wondered if it was even doing any good at this point and I couldn't keep track of "is this the 3rd day?" so I just discontinued it after a while. My doctor didn't make a big deal of me quitting either.

Now, since then, I have had a few episodes of hemoptysis, but I will cough maybe 6 coughs (over a period of maybe 2-3 hours) of tinged, streaked or whole blood that gradually phases out. Maybe 2-3 tablespoons, nothing like I did that first time.

I think some of what has caused it after quitting Pulmozyme is that it seemed to follow me doing certain things. One time I painted a small, enclosed closet and the next day I coughed up blood. Another day I cleaned the house thoroughly and coughed up blood the next day, possibly from the cleaning product fumes?? Other times I suspect it's broken blood vessels from having to really cough hard to get something up. And I'm sure there's the time or 2 that had no explanation that I could figure out. Luckily it hasn't happened that often lately. (knock on wood)

I hope this helped<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

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

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



Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.
</end quote></div>



I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

When I had my first one, while on Pulmozyme, I coughed up pure blood, probably 1/4 to 1/2 of a cup. As I was rushing to the emergency room, since this had never happened to me before, I called my doctor's office & he told me that hemoptysis can be a side effect of Pulmozyme & to take quite a few days off. I did this, then tried again & here came the blood. Tried it every other day, blood again. Finally, every 3rd day seemed to work, but I wondered if it was even doing any good at this point and I couldn't keep track of "is this the 3rd day?" so I just discontinued it after a while. My doctor didn't make a big deal of me quitting either.

Now, since then, I have had a few episodes of hemoptysis, but I will cough maybe 6 coughs (over a period of maybe 2-3 hours) of tinged, streaked or whole blood that gradually phases out. Maybe 2-3 tablespoons, nothing like I did that first time.

I think some of what has caused it after quitting Pulmozyme is that it seemed to follow me doing certain things. One time I painted a small, enclosed closet and the next day I coughed up blood. Another day I cleaned the house thoroughly and coughed up blood the next day, possibly from the cleaning product fumes?? Other times I suspect it's broken blood vessels from having to really cough hard to get something up. And I'm sure there's the time or 2 that had no explanation that I could figure out. Luckily it hasn't happened that often lately. (knock on wood)

I hope this helped<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

Landy

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

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



Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.
</end quote></div>



I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

When I had my first one, while on Pulmozyme, I coughed up pure blood, probably 1/4 to 1/2 of a cup. As I was rushing to the emergency room, since this had never happened to me before, I called my doctor's office & he told me that hemoptysis can be a side effect of Pulmozyme & to take quite a few days off. I did this, then tried again & here came the blood. Tried it every other day, blood again. Finally, every 3rd day seemed to work, but I wondered if it was even doing any good at this point and I couldn't keep track of "is this the 3rd day?" so I just discontinued it after a while. My doctor didn't make a big deal of me quitting either.

Now, since then, I have had a few episodes of hemoptysis, but I will cough maybe 6 coughs (over a period of maybe 2-3 hours) of tinged, streaked or whole blood that gradually phases out. Maybe 2-3 tablespoons, nothing like I did that first time.

I think some of what has caused it after quitting Pulmozyme is that it seemed to follow me doing certain things. One time I painted a small, enclosed closet and the next day I coughed up blood. Another day I cleaned the house thoroughly and coughed up blood the next day, possibly from the cleaning product fumes?? Other times I suspect it's broken blood vessels from having to really cough hard to get something up. And I'm sure there's the time or 2 that had no explanation that I could figure out. Luckily it hasn't happened that often lately. (knock on wood)

I hope this helped<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

wuffles

New member
I don't use Pulmozyme. I've never used it. This is the choice that I have made in consultation with my doctors [effectiveness for my case, cost, quality of life are all part of that decision].

It's hard to decide for a child, though...
 
W

wuffles

New member
I don't use Pulmozyme. I've never used it. This is the choice that I have made in consultation with my doctors [effectiveness for my case, cost, quality of life are all part of that decision].

It's hard to decide for a child, though...
 
W

wuffles

New member
I don't use Pulmozyme. I've never used it. This is the choice that I have made in consultation with my doctors [effectiveness for my case, cost, quality of life are all part of that decision].

It's hard to decide for a child, though...
 
J

Jem

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

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

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

Well, shortly after wards, I had my first episode of hemoptysis ever and it was attributed to Pulmozyme.

</end quote></div>

I was hoping you could answer this question for me...You said that your first episode of hemoptysis started after starting pulmozyme so you stopped. Does that mean you have never had hemoptysis again? As a fellow bleeder (only very rare now since my last surgery in 1999) who does take pulmozyme once a day I am curious. Thank you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

When I had my first one, while on Pulmozyme, I coughed up pure blood, probably 1/4 to 1/2 of a cup. As I was rushing to the emergency room, since this had never happened to me before, I called my doctor's office & he told me that hemoptysis can be a side effect of Pulmozyme & to take quite a few days off. I did this, then tried again & here came the blood. Tried it every other day, blood again. Finally, every 3rd day seemed to work, but I wondered if it was even doing any good at this point and I couldn't keep track of "is this the 3rd day?" so I just discontinued it after a while. My doctor didn't make a big deal of me quitting either.

Now, since then, I have had a few episodes of hemoptysis, but I will cough maybe 6 coughs (over a period of maybe 2-3 hours) of tinged, streaked or whole blood that gradually phases out. Maybe 2-3 tablespoons, nothing like I did that first time.

I think some of what has caused it after quitting Pulmozyme is that it seemed to follow me doing certain things. One time I painted a small, enclosed closet and the next day I coughed up blood. Another day I cleaned the house thoroughly and coughed up blood the next day, possibly from the cleaning product fumes?? Other times I suspect it's broken blood vessels from having to really cough hard to get something up. And I'm sure there's the time or 2 that had no explanation that I could figure out. Luckily it hasn't happened that often lately. (knock on wood)

I hope this helped<img src="i/expressions/face-icon-small-smile.gif" border="0">

<i>Thanks Lynda...I appreciate you answering my question. It is always good to hear other experiences. I hope you do not have anymore bleeding...I know how scary and disheartening it is to have an episode.[</i><img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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