tell me about pulmozyme

[thelizardqueen]

I just started taking Pulmozyme about 3 weeks ago, and boy do I notice a difference. I'm coughing up more then I've ever coughed up before. I take mine once a day as well. For those that take it once a day, what time of the day do you take it?

 

[CFHockeyMom]

When Sean was 2 he was in a double blind placebo study for the use of Pulmozyme on kids under 6. Back then it hadn't yet been recommended for kids under 6. Well, about a week into the study, we noticed a huge difference in Sean. He was doing so much better. We suspected that he wasn't on the placebo and was nebbing the Pulmozyme so after the study ended we asked our Dr. to find out if Sean was indeed on the Pulmozyme. Sure enough, he was and we immeadiately asked our Dr. to right him an Rx. He's been on it ever since.

That said, we had trouble with our insurance changes two years ago and he was off Pulmozyme for a while (month or so). We didn't really notice any difference once he went off of it or once he got back on it. That could be because he was a lot sicker when he was 2 so it may have been easier to notice a difference.

Have you checked out Amy's Blog (the Dr. Warwick stuff) at all. From what I read, Dr. Warwick likes Mucomyst so you may want to consider that instead. Just a thought.

Liz, Sean always does his in the late afternoon but when he was younger he always did it in the morning. We didn't notice any difference in what time of day he does it. Our Dr. said it didn't matter when you did it as long as you did it at the same time every day.

 

[CFHockeyMom]

When Sean was 2 he was in a double blind placebo study for the use of Pulmozyme on kids under 6. Back then it hadn't yet been recommended for kids under 6. Well, about a week into the study, we noticed a huge difference in Sean. He was doing so much better. We suspected that he wasn't on the placebo and was nebbing the Pulmozyme so after the study ended we asked our Dr. to find out if Sean was indeed on the Pulmozyme. Sure enough, he was and we immeadiately asked our Dr. to right him an Rx. He's been on it ever since.

That said, we had trouble with our insurance changes two years ago and he was off Pulmozyme for a while (month or so). We didn't really notice any difference once he went off of it or once he got back on it. That could be because he was a lot sicker when he was 2 so it may have been easier to notice a difference.

Have you checked out Amy's Blog (the Dr. Warwick stuff) at all. From what I read, Dr. Warwick likes Mucomyst so you may want to consider that instead. Just a thought.

Liz, Sean always does his in the late afternoon but when he was younger he always did it in the morning. We didn't notice any difference in what time of day he does it. Our Dr. said it didn't matter when you did it as long as you did it at the same time every day.

 

[CFHockeyMom]

When Sean was 2 he was in a double blind placebo study for the use of Pulmozyme on kids under 6. Back then it hadn't yet been recommended for kids under 6. Well, about a week into the study, we noticed a huge difference in Sean. He was doing so much better. We suspected that he wasn't on the placebo and was nebbing the Pulmozyme so after the study ended we asked our Dr. to find out if Sean was indeed on the Pulmozyme. Sure enough, he was and we immeadiately asked our Dr. to right him an Rx. He's been on it ever since.

That said, we had trouble with our insurance changes two years ago and he was off Pulmozyme for a while (month or so). We didn't really notice any difference once he went off of it or once he got back on it. That could be because he was a lot sicker when he was 2 so it may have been easier to notice a difference.

Have you checked out Amy's Blog (the Dr. Warwick stuff) at all. From what I read, Dr. Warwick likes Mucomyst so you may want to consider that instead. Just a thought.

Liz, Sean always does his in the late afternoon but when he was younger he always did it in the morning. We didn't notice any difference in what time of day he does it. Our Dr. said it didn't matter when you did it as long as you did it at the same time every day.

 

[bmombtoo]

Wanderlust your baby girl is beautiful.<br>
<br>
Josh just started taking pulmozyne as of this Wednesday so I
haven't noticed anything yet. We have a Pari compressor so it took
about 5 minutes. I think I noticed a little hoarseness yesterday,
but than hoarseness is a part of his asthma, allergy, CF thing.
Tell me what I should be concerned about with hoarseness?<br>
<br>
And Liz....He takes his about 7 or 8 in the evening. about 1 and
i/2 to 2 hours before bedtime. Can't do the mornings or we would
all be later getting out the door than we already are. <img alt=
"Embarrasment" border="0" src=
"i/expressions/face-icon-small-blush.gif">

 

[bmombtoo]

Wanderlust your baby girl is beautiful.<br>
<br>
Josh just started taking pulmozyne as of this Wednesday so I
haven't noticed anything yet. We have a Pari compressor so it took
about 5 minutes. I think I noticed a little hoarseness yesterday,
but than hoarseness is a part of his asthma, allergy, CF thing.
Tell me what I should be concerned about with hoarseness?<br>
<br>
And Liz....He takes his about 7 or 8 in the evening. about 1 and
i/2 to 2 hours before bedtime. Can't do the mornings or we would
all be later getting out the door than we already are. <img alt=
"Embarrasment" border="0" src=
"i/expressions/face-icon-small-blush.gif">

 

[bmombtoo]

Wanderlust your baby girl is beautiful.<br>
<br>
Josh just started taking pulmozyne as of this Wednesday so I
haven't noticed anything yet. We have a Pari compressor so it took
about 5 minutes. I think I noticed a little hoarseness yesterday,
but than hoarseness is a part of his asthma, allergy, CF thing.
Tell me what I should be concerned about with hoarseness?<br>
<br>
And Liz....He takes his about 7 or 8 in the evening. about 1 and
i/2 to 2 hours before bedtime. Can't do the mornings or we would
all be later getting out the door than we already are. <img alt=
"Embarrasment" border="0" src=
"i/expressions/face-icon-small-blush.gif">

 

[Bumblebee]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> DS has been on
pulmozyme for about a year. I can't notice a difference in his
case, but it's being used more as a preventative for him. His
doctor indicated that some of his patients can't use it because
they've gotten hoarse, but haven't noticed that being the case with
ds. He gets his pulmozyme after his last cpt treatment & nebs.
Takes about 5-8 minutes nebulized using the pulmoaide (devilbiss)
compressor) It's my understanding too that genetech has a program
similar to tobi to help individuals with high copays, etc.</end quote></div><br>
<br>
Hiya Ratatoski<br>
Just a wonderment about the order of you treatment.  Shouldn't
it be Pulmozyme FIRST, then wait 30mins to allow it to thin the
mucus, Then physio as mucus is thinned and it's easier to get up,
and finally antibiotics to act on what is left and your not wasting
AB's by coughing them back up? <br>
xxxx

 

[Bumblebee]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> DS has been on
pulmozyme for about a year. I can't notice a difference in his
case, but it's being used more as a preventative for him. His
doctor indicated that some of his patients can't use it because
they've gotten hoarse, but haven't noticed that being the case with
ds. He gets his pulmozyme after his last cpt treatment & nebs.
Takes about 5-8 minutes nebulized using the pulmoaide (devilbiss)
compressor) It's my understanding too that genetech has a program
similar to tobi to help individuals with high copays, etc.</end quote></div><br>
<br>
Hiya Ratatoski<br>
Just a wonderment about the order of you treatment.  Shouldn't
it be Pulmozyme FIRST, then wait 30mins to allow it to thin the
mucus, Then physio as mucus is thinned and it's easier to get up,
and finally antibiotics to act on what is left and your not wasting
AB's by coughing them back up? <br>
xxxx

 

[Bumblebee]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i> DS has been on
pulmozyme for about a year. I can't notice a difference in his
case, but it's being used more as a preventative for him. His
doctor indicated that some of his patients can't use it because
they've gotten hoarse, but haven't noticed that being the case with
ds. He gets his pulmozyme after his last cpt treatment & nebs.
Takes about 5-8 minutes nebulized using the pulmoaide (devilbiss)
compressor) It's my understanding too that genetech has a program
similar to tobi to help individuals with high copays, etc.</end quote></div><br>
<br>
Hiya Ratatoski<br>
Just a wonderment about the order of you treatment.  Shouldn't
it be Pulmozyme FIRST, then wait 30mins to allow it to thin the
mucus, Then physio as mucus is thinned and it's easier to get up,
and finally antibiotics to act on what is left and your not wasting
AB's by coughing them back up? <br>
xxxx

 

[Ratatosk]

Some people do pulmozyme in the morning to get things moving. Because DS is on Tobi every other month, we do pulmozyme around 9:30 or 10 at night -- last treatment. His RT told us that was fine because then the pulmozyme would stay in the lungs longer.

And I guess when he was first put on it we were told and I'd read -- bronchiodialators (albuterol/atrovent), cpt and pulmozyme last. Guess I'll have to double check the drug literature, etc.

 

[Ratatosk]

Some people do pulmozyme in the morning to get things moving. Because DS is on Tobi every other month, we do pulmozyme around 9:30 or 10 at night -- last treatment. His RT told us that was fine because then the pulmozyme would stay in the lungs longer.

And I guess when he was first put on it we were told and I'd read -- bronchiodialators (albuterol/atrovent), cpt and pulmozyme last. Guess I'll have to double check the drug literature, etc.

 

[Ratatosk]

Some people do pulmozyme in the morning to get things moving. Because DS is on Tobi every other month, we do pulmozyme around 9:30 or 10 at night -- last treatment. His RT told us that was fine because then the pulmozyme would stay in the lungs longer.

And I guess when he was first put on it we were told and I'd read -- bronchiodialators (albuterol/atrovent), cpt and pulmozyme last. Guess I'll have to double check the drug literature, etc.

 

[thelizardqueen]

I looked up an old thread of mine concerning Pulmozyme, and order in which to do things. This is what I found:

"This is what I got from the Cf Foundation website - this is the order in which to do things:

1. airway dilators (albuterol, ventolin, etc)
2. DNase (Pulmozyme)
3. airway clearance techniques (vest, percussor, acapella, etc)
4. antibiotics (Colistin, TOBI, etc)
5. inhaled steriods (advair, symbicort, pulmicort, etc)"

You should be waiting about 20-30mins after Pulmozyme to be doing CPT. That way the med is in and doing its thing (thinning mucus for you to cough it out).

Here's the link to the thread:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7638&highlight_key=y&keyword1=pulmozyme%20hypertonic%20saline%20albuterol">http://forums.cysticfibrosis.c...c%20saline%20albuterol</a>

 

[thelizardqueen]

I looked up an old thread of mine concerning Pulmozyme, and order in which to do things. This is what I found:

"This is what I got from the Cf Foundation website - this is the order in which to do things:

1. airway dilators (albuterol, ventolin, etc)
2. DNase (Pulmozyme)
3. airway clearance techniques (vest, percussor, acapella, etc)
4. antibiotics (Colistin, TOBI, etc)
5. inhaled steriods (advair, symbicort, pulmicort, etc)"

You should be waiting about 20-30mins after Pulmozyme to be doing CPT. That way the med is in and doing its thing (thinning mucus for you to cough it out).

Here's the link to the thread:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7638&highlight_key=y&keyword1=pulmozyme%20hypertonic%20saline%20albuterol">http://forums.cysticfibrosis.c...c%20saline%20albuterol</a>

 

[thelizardqueen]

I looked up an old thread of mine concerning Pulmozyme, and order in which to do things. This is what I found:

"This is what I got from the Cf Foundation website - this is the order in which to do things:

1. airway dilators (albuterol, ventolin, etc)
2. DNase (Pulmozyme)
3. airway clearance techniques (vest, percussor, acapella, etc)
4. antibiotics (Colistin, TOBI, etc)
5. inhaled steriods (advair, symbicort, pulmicort, etc)"

You should be waiting about 20-30mins after Pulmozyme to be doing CPT. That way the med is in and doing its thing (thinning mucus for you to cough it out).

Here's the link to the thread:

<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=7638&highlight_key=y&keyword1=pulmozyme%20hypertonic%20saline%20albuterol">http://forums.cysticfibrosis.c...c%20saline%20albuterol</a>

 

[coltsfan715]

I have been on Pulmozyme for years now. I remember starting it when it first came out and have had a script for it ever since.

I will say I had a hard time noticing a change when I first started using it. It was very hard for me to get on a set routine of using it everyday because I didn't see the point at first. I told the doc I don't feel any different what is the point and the doc told me that with Pulmozyme it is something that you will notice the effects of more in the long term than the short term. I don't recall any specifics as too why she said that because she told me that SOOO long ago.

I know that years past before I noticed a difference between my using it every day and my skipping a day here or there. I am too the point now where if I go a few days without it I can tell a huge difference in my breathing, my cough the thickness of the stuff everything. It is a medication that I truly value having in my arsenal lol.

I take it once a day - usually at night just because it is easier with time when I am taking 4 different nebs (in my TOBI months). I just took it this past month twice a day - that lasted for about 2-3 weeks and my doc took me off because I was shaving severe shortness of breath(like constant hyperventilation can't stand up let alone walk shortness of breath), my tongue felt swollen, my throat felt tight and swollen as well and I was having difficulty swallowing. The doc said those are all signs that the pulmozyme is having a negative effect. All of those symptoms went away within about 2-3 days of my being taken off of Pulmozyme and TOBI (I start Pulmo again today after a week break).

Lindsey

 

[coltsfan715]

I have been on Pulmozyme for years now. I remember starting it when it first came out and have had a script for it ever since.

I will say I had a hard time noticing a change when I first started using it. It was very hard for me to get on a set routine of using it everyday because I didn't see the point at first. I told the doc I don't feel any different what is the point and the doc told me that with Pulmozyme it is something that you will notice the effects of more in the long term than the short term. I don't recall any specifics as too why she said that because she told me that SOOO long ago.

I know that years past before I noticed a difference between my using it every day and my skipping a day here or there. I am too the point now where if I go a few days without it I can tell a huge difference in my breathing, my cough the thickness of the stuff everything. It is a medication that I truly value having in my arsenal lol.

I take it once a day - usually at night just because it is easier with time when I am taking 4 different nebs (in my TOBI months). I just took it this past month twice a day - that lasted for about 2-3 weeks and my doc took me off because I was shaving severe shortness of breath(like constant hyperventilation can't stand up let alone walk shortness of breath), my tongue felt swollen, my throat felt tight and swollen as well and I was having difficulty swallowing. The doc said those are all signs that the pulmozyme is having a negative effect. All of those symptoms went away within about 2-3 days of my being taken off of Pulmozyme and TOBI (I start Pulmo again today after a week break).

Lindsey

 

[coltsfan715]

I have been on Pulmozyme for years now. I remember starting it when it first came out and have had a script for it ever since.

I will say I had a hard time noticing a change when I first started using it. It was very hard for me to get on a set routine of using it everyday because I didn't see the point at first. I told the doc I don't feel any different what is the point and the doc told me that with Pulmozyme it is something that you will notice the effects of more in the long term than the short term. I don't recall any specifics as too why she said that because she told me that SOOO long ago.

I know that years past before I noticed a difference between my using it every day and my skipping a day here or there. I am too the point now where if I go a few days without it I can tell a huge difference in my breathing, my cough the thickness of the stuff everything. It is a medication that I truly value having in my arsenal lol.

I take it once a day - usually at night just because it is easier with time when I am taking 4 different nebs (in my TOBI months). I just took it this past month twice a day - that lasted for about 2-3 weeks and my doc took me off because I was shaving severe shortness of breath(like constant hyperventilation can't stand up let alone walk shortness of breath), my tongue felt swollen, my throat felt tight and swollen as well and I was having difficulty swallowing. The doc said those are all signs that the pulmozyme is having a negative effect. All of those symptoms went away within about 2-3 days of my being taken off of Pulmozyme and TOBI (I start Pulmo again today after a week break).

Lindsey

 

[marcijo]

I started pulmozyme 3+ years ago before I found out I was pregnant with my daughter. I had to stop it while I was pregnant and then just started it back up about 6 months ago.
I notice that it really helps when I am taking both the pulmozyme and my advair. I have just started the HS (I actually need to go pick it up from the pharmacy today!) so we'll see if that makes a difference.
I think for me, the advair opens up my airways and makes it easier to cough things up, and the pulmozyme thins the mucus out making it much easier to get out. So-the 2 combined work fantastic together. I am excited to see how the HS will add to that too.
The cost of pulmozyme was a big problem for me, if I bought a 1 month supply at a pharmacy I had to pay up front ($1500.00!) and then get reimbursemed for it by my health insurance. For me, that was just not do-able. So now I do it mail order and get a 90 day supply for a copay of $80.00. Go figure!
I suggest that you try it if possible-and see if you notice a difference. My FEV1 is about 83%-I am doing all my stuff as a preventative measure, and since I started the Advair, the Vest, and the Pulmozyme, my FEV1 went up from about 75% to 83%, I was thrilled! I was diagnosed at age 20, and at that time my FEV1 was at about 83%-so the amount that I lost over the last 10 years was made up by starting this stuff!