Pulmozyme Question

[Ratatosk]

DS was put on Pulmozyme by the local clinic. It's just that they do when kids reach a certain age, put them on it. We'd asked our primary CF doctor in the city what he thought -- he said it's a good drug, wouldn't hurt. He's got patients on it, and/or mucomyst and really doesn't see a difference healthwise.

Recently at a Great Strides meeting another parent, whose child is the same age as DS asked about it. They go to U of MN and had asked their previous doctor (Milla) about it, but he didn't think it was necessary. The parent assumed it was a cost issue; however, they want to make sure their child is getting the best care, meds possible and wonder if maybe their child shouldn't be on it, too. They've dealt with more lung issues, inflammation... Hasn't culutured PA yet, but has cultured staph and have dealt with several UR infections a year...

Just wondering what everyone else's take is on pulmozyme. Child is 4 years old.

 

[Ratatosk]

DS was put on Pulmozyme by the local clinic. It's just that they do when kids reach a certain age, put them on it. We'd asked our primary CF doctor in the city what he thought -- he said it's a good drug, wouldn't hurt. He's got patients on it, and/or mucomyst and really doesn't see a difference healthwise.

Recently at a Great Strides meeting another parent, whose child is the same age as DS asked about it. They go to U of MN and had asked their previous doctor (Milla) about it, but he didn't think it was necessary. The parent assumed it was a cost issue; however, they want to make sure their child is getting the best care, meds possible and wonder if maybe their child shouldn't be on it, too. They've dealt with more lung issues, inflammation... Hasn't culutured PA yet, but has cultured staph and have dealt with several UR infections a year...

Just wondering what everyone else's take is on pulmozyme. Child is 4 years old.

 

[Ratatosk]

DS was put on Pulmozyme by the local clinic. It's just that they do when kids reach a certain age, put them on it. We'd asked our primary CF doctor in the city what he thought -- he said it's a good drug, wouldn't hurt. He's got patients on it, and/or mucomyst and really doesn't see a difference healthwise.

Recently at a Great Strides meeting another parent, whose child is the same age as DS asked about it. They go to U of MN and had asked their previous doctor (Milla) about it, but he didn't think it was necessary. The parent assumed it was a cost issue; however, they want to make sure their child is getting the best care, meds possible and wonder if maybe their child shouldn't be on it, too. They've dealt with more lung issues, inflammation... Hasn't culutured PA yet, but has cultured staph and have dealt with several UR infections a year...

Just wondering what everyone else's take is on pulmozyme. Child is 4 years old.

 

[NoExcuses]

You can read my Warwick blog and read his opinion on Pulmozyme.....

 

[NoExcuses]

You can read my Warwick blog and read his opinion on Pulmozyme.....

 

[NoExcuses]

You can read my Warwick blog and read his opinion on Pulmozyme.....

 

[Scarlett81]

My doctors consider pulmozyme to be very neccessary-by no means a 'couldn't hurt to take it' drug. Its one of the reasons that we are living longer. I've never heard a cf doc refer to it as anything but neccessary, I'm kinda shocked. I dont' understand why they'd say this.
Thats my experience with it, and I've been on it since I was maybe 15ish. (??Can't remember), But lets say, a long time.

 

[Scarlett81]

My doctors consider pulmozyme to be very neccessary-by no means a 'couldn't hurt to take it' drug. Its one of the reasons that we are living longer. I've never heard a cf doc refer to it as anything but neccessary, I'm kinda shocked. I dont' understand why they'd say this.
Thats my experience with it, and I've been on it since I was maybe 15ish. (??Can't remember), But lets say, a long time.

 

[Scarlett81]

My doctors consider pulmozyme to be very neccessary-by no means a 'couldn't hurt to take it' drug. Its one of the reasons that we are living longer. I've never heard a cf doc refer to it as anything but neccessary, I'm kinda shocked. I dont' understand why they'd say this.
Thats my experience with it, and I've been on it since I was maybe 15ish. (??Can't remember), But lets say, a long time.

 

[dramamama]

When pulmozyme came out, I was in college. I had NEVER coughed up anything at that point and was so excited to try something that would help. Keep in mind I was extremely healthy and 100% compliant. On my 3rd day pf pulmozyme, I started running high fevers and terrible achiness.....had to quit the drug because we assumed it was a side effect. Several months later, we tried it again and because most were not experiencing any problems, my docs figured I was geting sicker....so dumb. 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.

Now, I need pulmozyme and I find that it helps.....and I have no side effects.

Interestingly, we believe that my 2nd bronch is what exposed me to my mycobacterium. I tested positive only 3 months after that bronch....having NEVER had a bad bug before.

 

[dramamama]

When pulmozyme came out, I was in college. I had NEVER coughed up anything at that point and was so excited to try something that would help. Keep in mind I was extremely healthy and 100% compliant. On my 3rd day pf pulmozyme, I started running high fevers and terrible achiness.....had to quit the drug because we assumed it was a side effect. Several months later, we tried it again and because most were not experiencing any problems, my docs figured I was geting sicker....so dumb. 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.

Now, I need pulmozyme and I find that it helps.....and I have no side effects.

Interestingly, we believe that my 2nd bronch is what exposed me to my mycobacterium. I tested positive only 3 months after that bronch....having NEVER had a bad bug before.

 

[dramamama]

When pulmozyme came out, I was in college. I had NEVER coughed up anything at that point and was so excited to try something that would help. Keep in mind I was extremely healthy and 100% compliant. On my 3rd day pf pulmozyme, I started running high fevers and terrible achiness.....had to quit the drug because we assumed it was a side effect. Several months later, we tried it again and because most were not experiencing any problems, my docs figured I was geting sicker....so dumb. 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.

Now, I need pulmozyme and I find that it helps.....and I have no side effects.

Interestingly, we believe that my 2nd bronch is what exposed me to my mycobacterium. I tested positive only 3 months after that bronch....having NEVER had a bad bug before.

 

[ktsmom]

dramamama - I'm really sorry for your experience, ESPECIALLY since the bronch exposed you to the mycobacterium. I'm sending you a PM too because I have some more questions. Your story also scares the crap out of me. This is one of those things where you are supposed to trust that the docs know what they are doing, but as has been brought up here, and also in other recent posts, when is "preventive" treatment REALLY TOO MUCH??? Yikes.

 

[ktsmom]

dramamama - I'm really sorry for your experience, ESPECIALLY since the bronch exposed you to the mycobacterium. I'm sending you a PM too because I have some more questions. Your story also scares the crap out of me. This is one of those things where you are supposed to trust that the docs know what they are doing, but as has been brought up here, and also in other recent posts, when is "preventive" treatment REALLY TOO MUCH??? Yikes.

 

[ktsmom]

dramamama - I'm really sorry for your experience, ESPECIALLY since the bronch exposed you to the mycobacterium. I'm sending you a PM too because I have some more questions. Your story also scares the crap out of me. This is one of those things where you are supposed to trust that the docs know what they are doing, but as has been brought up here, and also in other recent posts, when is "preventive" treatment REALLY TOO MUCH??? Yikes.

 

[lightNlife]

In my opinion, there's no such thing as too much preventive treatment with CF. As the saying goes, an ounce of prevention is worth a pound of cure...and since there's no cure for CF, prevention against infection is all we've really got going for us.

Too much of a good thing really only applies to antibiotics, not mucolytics.

 

[lightNlife]

In my opinion, there's no such thing as too much preventive treatment with CF. As the saying goes, an ounce of prevention is worth a pound of cure...and since there's no cure for CF, prevention against infection is all we've really got going for us.

Too much of a good thing really only applies to antibiotics, not mucolytics.

 

[lightNlife]

In my opinion, there's no such thing as too much preventive treatment with CF. As the saying goes, an ounce of prevention is worth a pound of cure...and since there's no cure for CF, prevention against infection is all we've really got going for us.

Too much of a good thing really only applies to antibiotics, not mucolytics.

 

[Landy]

<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.

 

[Landy]

<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.