pumozyme question

[amber682]

Is pulmozyme a mucus thinner or an antibiotic? (I thought it was a
mucus thinner) If it is, why don't all people with cf use it all
the time? I would think it would make it easier for the cilia to
sweep bad stuff out of the lungs and therefore help to prevent
infections. Please correct me if I'm wrong!

 

[Allisa35]

To my knowledge, Pulmozyme is a mucus thinner. I've been on it for years now. I would think most cf patients would be on it but I'm not sure. I also think your theory would be right; that it would help clean stuff out to help prevent you from getting an infection. That makes sense to me.

 

[Joanne]

Pulmozyme is a mucous thinner ( by the way made from Japanese Hamster Ovaries) and TOBI is the antiobiotic.

There is no harm in doing Pulmo everyday all the time. It is TOBI you do for 30 days, then a 30 day break.

Maybe because your son is so young they do it differently. Ask his docs.

Joannne Schum

 

[tammykrumrey]

I am pretty sure that it is a mucus thinner and not an antibiotic. My 8 year old daughter was just recently put on pulmozyme daily about two months ago. She was having a very bad cough, and did a two week course of IV's. Our CF doctor had her try the hypertonic saline first, prior to the pulmozyme, but her PFT's had dropped into the 30's when trying the hypertonic saline. So she was started on pulmozyme. I also have a soon to be 7 year old daughter who is not on the saline nor the pulmozyme. She hardly ever has a cough and PFT's are in the 90's and her X-rays are always clear. Their CF doc doesn't see any reason to start her on it just yet because she is doing so good<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

Definitely not an antibiotic.

The latest research is to start Pulmozyme as early as possible to prevent mucus build up and infection. So even if patients aren't symptomatic, pulmozyme is a good way to keep them asymptomatic.

With CF it's all about prevention. Treating symptoms when they arise is good, but preventing symptoms from ever happening is the way to go.

Once symptoms arise, lung damage is already present.

Pulmozyme is a fantastic drug.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

Is pulmozyme a mucus thinner or an antibiotic? (I thought it was a
mucus thinner) If it is, why don't all people with cf use it all
the time? I would think it would make it easier for the cilia to
sweep bad stuff out of the lungs and therefore help to prevent
infections. Please correct me if I'm wrong!</end quote></div>


Many physicians are incentivized by insurance companies to keep costs down. This includes hospitalizations, medications and surgeries.

Otherwise, I can't figure out why anyone wouldn't be on pulmozyme.

Even if you are asymptomatic, the best way to stay that way is to be on pulmozyme and chest PT daily.

So you bring up a great point. Everyone should be on it (unless of course they get bad side effects which rarely people do) but docs often have their own motivations.....

 

[Ratatosk]

Package insert says something about it being like little scissors -- cutting up the mucus. DS was put on this once a day last fall and I guess I was a little apprehensive because the doctor that put him on it seems to have all his patients on the same meds and DS really hasn't had problems with coughing stuff up yet. But we've gotten used to it -- the extra treatment, which we do right before he goes to sleep, right after his last cpt/neb treatment.

In terms of the costs, Genetech, the company that makes it, does have a program for people who can't afford it -- high copays, etc. Similar to the tobi foundation program.

 

[Scarlett81]

There are only 2 times my doc has taken me off it.
1-I had a leg swelling condition and they didn't know why I was having it, so they took me off several meds to make sure it was a side effect. (pulmozyme was one of them they stopped)
2-I coughed up blood (hemoptysis) once and she had me stop pulmozyme for a few weeks.

 

[coltsfan715]

I am glad that Christian mentioned coughing up blood because I know several people that have had the same problem. I personally have never had a problem with pulmozyme and have been taking it daily for over 10 years, but I know some people that can not take it or they end up at the ER due to severe hemoptysis (sp?).

Lindsey

 

[Nicole]

Danny has been on Pulmozyme since birth.

 

[amber682]

Thanks! I know my son has been put on it 2x, both times while sick.
He is actually on it right now until his cough clears up, with some
other meds. I had thought it was a mucus thinner. It just made me
wonder why all cf'ers aren't on it all the time. I would think it
would be a daily proactive treatment, like CPT. I think I'll ask
the dr. when we go back to the clinic on Wednesday.  Since its
only our 2nd appt at this clinic, I already have a list of
questions that I'm bringing with me.

 

[hbendz]

Good afternoon!<br>
<br>
My name is Holly and I will be giving birth to a baby girl
(Maggie-Faye) in 6 weeks (unless she decides to be early or late).
 She has Cystic Fibrosis.  My husband and I were not
aware we were carriers until after we conceived.  At our first
prenatal visit, I was asked if I wanted to be tested to see if I
was a CF carrier since my husband and I are both of European
decent.  I said sure...not even knowing what CF was.  I
came back as a carrier and then my husband was tested.  When
we found out he was a carrier, too, I had a CVS procedure at 12
weeks.  This confirmed that Maggie-Faye has CF.  While
the news was devastating, at least we have had this time before
Maggie-Faye arrives to digest the news, cry and educate
ourselves so we can be the best parents possible once she is
here.<br>
<br>
On July 14th, we had our 3rd level II ultrasound.  The other
two had shown an echogenic bowel.  This one showed no signs of
an echogenic bowel AND they were able to verify that there is no
blockage.  Good news I am still rejoicing in!  We have
one more level II before Maggie-Faye arrives just to make sure
everything still looks good.  We are also meeting with the CF
Treatment Center on August 25th to establish a relationship prior
to Maggie-Faye's arrival.  At this point I feel we are as
ready as we can be.<br>
<br>
One thing that has also helped is that I work at Genentech.
 So, any questions I have had about CF I have asked the
Medical Director of Tissue Growth and Repair.  He has been
treating CF children for YEARS at one of the largest CF treatment
centers in the country and still does part time.  He has been
a wealth of information.  Everyone here at Genentech has been
wonderful.  They even donated over $3,000 in two weeks when my
husband and I decided to do the Strides for a Cure.  I say
this so all of you know that the people behind Pulmozyme truly care
and are passionate about children and adults with CF.  Seeing
that first hand has made me that much hopeful that Maggie-Faye will
see a cure in her lifetime.<br>
<br>
I have gotten so much from reading the postings on this site.
 While of course we don't know what we are facing and how soon
we will have to do what treatments, I know that we are not alone.
 Is anyone going to be attending the CFRI Conference in
Redwood City, CA the weekend of August 4th?  If so, let me
know as my husband and I will be there.<br>
<br>
I look forward to being a part of this forum and learning from
others that have been where my family is about to venture.<br>
<br>
Holly, soon-to-be mom to Maggie-Faye due September 11th

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amber682</b></i>

Thanks! I know my son has been put on it 2x, both times while sick.
He is actually on it right now until his cough clears up, with some
other meds. I had thought it was a mucus thinner. It just made me
wonder why all cf'ers aren't on it all the time. I would think it
would be a daily proactive treatment, like CPT. I think I'll ask
the dr. when we go back to the clinic on Wednesday.  Since its
only our 2nd appt at this clinic, I already have a list of
questions that I'm bringing with me.</end quote></div>

yes, you're right. if CF patients can tolerate it (no rare side effects) and their doctors are smart (and aren't listening to insurance companies who incentivize them to not Rx expensive drugs), then most CFers are on it all the time. NOT just when they're sick. The key, again, is prevention not treatment.

 

[NoExcuses]

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

Good afternoon!



My name is Holly and I will be giving birth to a baby girl
(Maggie-Faye) in 6 weeks (unless she decides to be early or late).
 She has Cystic Fibrosis.  My husband and I were not
aware we were carriers until after we conceived.  At our first
prenatal visit, I was asked if I wanted to be tested to see if I
was a CF carrier since my husband and I are both of European
decent.  I said sure...not even knowing what CF was.  I
came back as a carrier and then my husband was tested.  When
we found out he was a carrier, too, I had a CVS procedure at 12
weeks.  This confirmed that Maggie-Faye has CF.  While
the news was devastating, at least we have had this time before
Maggie-Faye arrives to digest the news, cry and educate
ourselves so we can be the best parents possible once she is
here.



On July 14th, we had our 3rd level II ultrasound.  The other
two had shown an echogenic bowel.  This one showed no signs of
an echogenic bowel AND they were able to verify that there is no
blockage.  Good news I am still rejoicing in!  We have
one more level II before Maggie-Faye arrives just to make sure
everything still looks good.  We are also meeting with the CF
Treatment Center on August 25th to establish a relationship prior
to Maggie-Faye's arrival.  At this point I feel we are as
ready as we can be.



One thing that has also helped is that I work at Genentech.
 So, any questions I have had about CF I have asked the
Medical Director of Tissue Growth and Repair.  He has been
treating CF children for YEARS at one of the largest CF treatment
centers in the country and still does part time.  He has been
a wealth of information.  Everyone here at Genentech has been
wonderful.  They even donated over $3,000 in two weeks when my
husband and I decided to do the Strides for a Cure.  I say
this so all of you know that the people behind Pulmozyme truly care
and are passionate about children and adults with CF.  Seeing
that first hand has made me that much hopeful that Maggie-Faye will
see a cure in her lifetime.



I have gotten so much from reading the postings on this site.
 While of course we don't know what we are facing and how soon
we will have to do what treatments, I know that we are not alone.
 Is anyone going to be attending the CFRI Conference in
Redwood City, CA the weekend of August 4th?  If so, let me
know as my husband and I will be there.



I look forward to being a part of this forum and learning from
others that have been where my family is about to venture.



Holly, soon-to-be mom to Maggie-Faye due September 11th</end quote></div>


OH! Please PM me. I will not be going (I don't like to be around other CFers) but my parents will both be there.

I am so happy to hear you speak about Genentech. So many people think pharma companies are EVIL which is just bogus. I myself am a pharma sales rep <img src="i/expressions/face-icon-small-smile.gif" border="0">

I will PM you and hopefully you can meet up with my parents. They would love to meet u!

 

[debs2girls]

First of all congrats on the little one............welcome Holly, to our little piece of Heaven on earth. This place has been alot of help to me since my dd was dx'ed in Nov. '05, just 2.5 weeks after I lost my older sister to cancer.
DD's doctor still has not put her on pulmozyme. She has a considerable amount of lung damage and is currently on her 6th exacerbation since starting at this clinic. She has had pnuemonia 20 times, and still he wont put her on it. She is pancreatic sufficient, at least he said she is. She has too many bowel issues and stomach aches for me to be completely behind him on this one.

 

[Justsmurfin]

I don't take Pulmozyme because for one thing I was one who could not take it.

The CF clinic I was diagnosed at really didn't use it much. Don't know why.

I've used Mucomyst and now take glutathione andhypertonic saline. All do me really well. The best combo for keeping me well has been lots of airway clearance, GSH, Saline and Cromolyn Sodium

 

[thefrogprincess]

My doc explained pulmozyme like this (if you know anything about biology that would help). We have the thick mucus build up, which breeds bacteria. When your immune system goes in to fight the bacteria (immune system = white blood cells) some of the white cells die and the strands of DNA in them get left sitting in your lungs. I have extracted DNA from fish cells, it looks like snot, so imagine this stuff sitting in your lungs just making things worse. Pulmo breaks up the DNA strands so that you can cough it up easier.

As with most things it doesn't work for everyone. Also if you have amazing PFTs and don't produce much sputum (like me) then why spend the $1000 a month on it? Sure you want to be proactive in your treatment and be preventative but if you don't NEED it, there's no point.

 

[rcq925]

I agree with you Jessi and this is why my doctor has not put Hayley on Pulmozyme yet. It does not work for everyone and it is very expensive!! ($1,500 per month) So for right now we are not using it. Plus Hayley is only 2 and it is just down being really studied in her age group to see if it is effective and if there are any major side effects. I know lots of people are on it and swear by it, but Dr. Warwick and Dr. Milla at the University of Minnesota don't like Pulmozyme and use Mucomyst instead. I know a friend who recently took her daughter to Dr. Warwick for a consultation and he has her doing an experiment to see if her daughter benefits from Pulmozyme. I don't know the specifics, but it is a week on and then a week off, week on for about 6 weeks and she is counting the respiratory rates while sleeping, but her daughter seems to do a lot better on the weeks she is NOT taking Pulmozyme. My doctor is looking to put Hayley on the Hypertonic Saline soon, but not Pulmozyme.

 

[coltsfan715]

I remember when I was first starting Pulmozyme I never felt a difference taking it. I kept telling the docs it isn't doing anything so why do I have to take it. Every time they told me it would take time to see the benefits of the med. I will agree it took several months for me to feel any difference and that was several months of me taking it every day without missing numerous treatments. I had a period of about 6 years where my lung function did not change and when it did it was only by a small percent - that may have happened without the pulmozyme I don't know. I will say this though .. after taking it as long as I have I can't go more than a day without taking it before I feel a difference .. for the worse. I get more congested cough more, short of breath, just feel plain horrible when I don't take it.

Maybe like some have mentioned and like so many meds .. for some it does the trick for others it doesn't.

Lindsey

 

[amber682]

My son has been on it 2x when sick. Maybe only when he's sick
because he's only 1 and 1/2 years old? I'll see what his dr. has to
say this Wed.