tell me about pulmozyme

[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!

 

[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!

 

[julie]

Pulmozyme is not like an antibiotic wherein if you forget to take it, you could build a resistance. Pulmozyme is more like, for an example.... tylenol or asprin or something. Not like a RX'd daily medication that you have to take... like TOBI.

That being said, we have a lot of extras, do you want to "try some out" first and see if you like it (not sure if you have a hefty copay or what). I can send you a few packets.


Mark does his in the PM, he prefers it then rather than in the AM. And somedays he misses it, but no big deal as far as resistance goes. His tobi on the other hand, I ride his butt to make sure he takes that!!!

 

[julie]

Pulmozyme is not like an antibiotic wherein if you forget to take it, you could build a resistance. Pulmozyme is more like, for an example.... tylenol or asprin or something. Not like a RX'd daily medication that you have to take... like TOBI.

That being said, we have a lot of extras, do you want to "try some out" first and see if you like it (not sure if you have a hefty copay or what). I can send you a few packets.


Mark does his in the PM, he prefers it then rather than in the AM. And somedays he misses it, but no big deal as far as resistance goes. His tobi on the other hand, I ride his butt to make sure he takes that!!!

 

[julie]

Pulmozyme is not like an antibiotic wherein if you forget to take it, you could build a resistance. Pulmozyme is more like, for an example.... tylenol or asprin or something. Not like a RX'd daily medication that you have to take... like TOBI.

That being said, we have a lot of extras, do you want to "try some out" first and see if you like it (not sure if you have a hefty copay or what). I can send you a few packets.


Mark does his in the PM, he prefers it then rather than in the AM. And somedays he misses it, but no big deal as far as resistance goes. His tobi on the other hand, I ride his butt to make sure he takes that!!!

 

[lilmac7]

I've used it on and off, very rearely tho. I remember reading somewhere, can't remember where now, that there is a chance for it to cause lung damage. Probly more so over long periods of use or if used when the lungs are very clear of mucus. The reason being is that it is an enzyme that breaks down DNA which is how it thins the mucus, but according to what I read it will do that to any DNA including the lung wall, airsacs, airways, throat, you name it, so if there isn't much mucus coating then any exposed areas will get it. Not sure how true it is but it makes sense and that could be why people experience hemoptysis and hoarseness in the throught. The times I've used it have only been when I'm very junky and having a hard time bringing it up, like when it's too thick.

 

[lilmac7]

I've used it on and off, very rearely tho. I remember reading somewhere, can't remember where now, that there is a chance for it to cause lung damage. Probly more so over long periods of use or if used when the lungs are very clear of mucus. The reason being is that it is an enzyme that breaks down DNA which is how it thins the mucus, but according to what I read it will do that to any DNA including the lung wall, airsacs, airways, throat, you name it, so if there isn't much mucus coating then any exposed areas will get it. Not sure how true it is but it makes sense and that could be why people experience hemoptysis and hoarseness in the throught. The times I've used it have only been when I'm very junky and having a hard time bringing it up, like when it's too thick.

 

[lilmac7]

I've used it on and off, very rearely tho. I remember reading somewhere, can't remember where now, that there is a chance for it to cause lung damage. Probly more so over long periods of use or if used when the lungs are very clear of mucus. The reason being is that it is an enzyme that breaks down DNA which is how it thins the mucus, but according to what I read it will do that to any DNA including the lung wall, airsacs, airways, throat, you name it, so if there isn't much mucus coating then any exposed areas will get it. Not sure how true it is but it makes sense and that could be why people experience hemoptysis and hoarseness in the throught. The times I've used it have only been when I'm very junky and having a hard time bringing it up, like when it's too thick.

 

[amber682]

My 20 month old son has been on pulmozyme for a couple months. I don't notice a difference really. But he's young and doesn't cough much anyways.

We do it in the morning. Duoneb to open up the airways, then pulmozyme, then wait 20-30 min and do CPT once the pulmozyme has had a chance to start working. Or if we're running late I'll do morning treatments but skip the pulmozyme and either do it with the night time treatments, or sometimes just in the afternoon as a separate treatment then go run around outside and play for a couple hours. But definately let it start working a little before doing the CPT, it'll make the CPT more effective (thats the reason why I like that he's on it).

I've read studies where in some people it makes them worse, and I believe there's some mention of this in Amy's blogs about Dr. Warwick.

 

[amber682]

My 20 month old son has been on pulmozyme for a couple months. I don't notice a difference really. But he's young and doesn't cough much anyways.

We do it in the morning. Duoneb to open up the airways, then pulmozyme, then wait 20-30 min and do CPT once the pulmozyme has had a chance to start working. Or if we're running late I'll do morning treatments but skip the pulmozyme and either do it with the night time treatments, or sometimes just in the afternoon as a separate treatment then go run around outside and play for a couple hours. But definately let it start working a little before doing the CPT, it'll make the CPT more effective (thats the reason why I like that he's on it).

I've read studies where in some people it makes them worse, and I believe there's some mention of this in Amy's blogs about Dr. Warwick.

 

[amber682]

My 20 month old son has been on pulmozyme for a couple months. I don't notice a difference really. But he's young and doesn't cough much anyways.

We do it in the morning. Duoneb to open up the airways, then pulmozyme, then wait 20-30 min and do CPT once the pulmozyme has had a chance to start working. Or if we're running late I'll do morning treatments but skip the pulmozyme and either do it with the night time treatments, or sometimes just in the afternoon as a separate treatment then go run around outside and play for a couple hours. But definately let it start working a little before doing the CPT, it'll make the CPT more effective (thats the reason why I like that he's on it).

I've read studies where in some people it makes them worse, and I believe there's some mention of this in Amy's blogs about Dr. Warwick.

 

[Nicole]

Danny has been on Pulmozyme since his diagnosis at birth so I don't know how he would be without it. We do it at his evening treatment just because we have more time then.

We have always been told Albuterol, CPT, then Pulmozyme. The reason they told us that pulmozyme is last is so you don't cough it all out during your treatment--it stays in your lungs longer.

As far as nebs go, we have a pari pro neb and it takes us between 10-15 minutes. Those who have posted about how long it takes them seem to have a much shorter time. What's the deal?

 

[Nicole]

Danny has been on Pulmozyme since his diagnosis at birth so I don't know how he would be without it. We do it at his evening treatment just because we have more time then.

We have always been told Albuterol, CPT, then Pulmozyme. The reason they told us that pulmozyme is last is so you don't cough it all out during your treatment--it stays in your lungs longer.

As far as nebs go, we have a pari pro neb and it takes us between 10-15 minutes. Those who have posted about how long it takes them seem to have a much shorter time. What's the deal?

 

[Nicole]

Danny has been on Pulmozyme since his diagnosis at birth so I don't know how he would be without it. We do it at his evening treatment just because we have more time then.

We have always been told Albuterol, CPT, then Pulmozyme. The reason they told us that pulmozyme is last is so you don't cough it all out during your treatment--it stays in your lungs longer.

As far as nebs go, we have a pari pro neb and it takes us between 10-15 minutes. Those who have posted about how long it takes them seem to have a much shorter time. What's the deal?

 

[Scarlett81]

(I'm doing it right now)

I've been on it since it came out, but I took a several year break from it once b/c of a dumb doctor. I had a decline in my pfts after that, and I'm sure it was partly due to stopping the pulmozyme.
My doctor says its a pretty remarkable drug. It actually snips those thick mucusy dna strands that we hate. Considering the research, though I know some disagree, I think what can we lose? It's drugs like these that are making us all live longer.

 

[Scarlett81]

(I'm doing it right now)

I've been on it since it came out, but I took a several year break from it once b/c of a dumb doctor. I had a decline in my pfts after that, and I'm sure it was partly due to stopping the pulmozyme.
My doctor says its a pretty remarkable drug. It actually snips those thick mucusy dna strands that we hate. Considering the research, though I know some disagree, I think what can we lose? It's drugs like these that are making us all live longer.

 

[Scarlett81]

(I'm doing it right now)

I've been on it since it came out, but I took a several year break from it once b/c of a dumb doctor. I had a decline in my pfts after that, and I'm sure it was partly due to stopping the pulmozyme.
My doctor says its a pretty remarkable drug. It actually snips those thick mucusy dna strands that we hate. Considering the research, though I know some disagree, I think what can we lose? It's drugs like these that are making us all live longer.