Pulmozyme yes or no

L

Lety

Guest
Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!
 
L

Lety

Guest
Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!
 
L

Lety

Guest
Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!
 
L

Lety

Guest
Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!
 
L

Lety

Guest
Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!
 
K

kitomd21

New member
Not sure where you actually read that these are known potential side effects of Pulmozyme use. The studies with Pulmozyme and the concerns you mentioned can likely relate to normal progression of the disease itself - NOT necessarily from Pulmozyme use. Take into consideration that an individual with cystic fibrosis is prone to any of these events - with or without the use of Pulmozyme. I tend to go with the conclusion that the effects you've listed don't relate directly to Pulmozyme. Please see <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/info/prescribing.jsp
">http://www.pulmozyme.com/info/prescribing.jsp
</a>
"Mortality rates observed in controlled trials were similar for the placebo and Pulmozyme treated patients. Causes of death were consistent with progression of cystic fibrosis and included apnea, cardiac arrest, cardiopulmonary arrest, cor pulmonale, heart failure, massive hemoptysis, pneumonia, pneumothorax, and respiratory failure."

Also consider that Pulmozyme doesn't function systemically to thin mucus...thus, the great appeal of other inhaled meds such as TOBI and AZLI. Consider the renal side effects of IV tobramycin vs. inhaled TOBI. The side effects are lessened and pseudomonas is treated directly.
 
K

kitomd21

New member
Not sure where you actually read that these are known potential side effects of Pulmozyme use. The studies with Pulmozyme and the concerns you mentioned can likely relate to normal progression of the disease itself - NOT necessarily from Pulmozyme use. Take into consideration that an individual with cystic fibrosis is prone to any of these events - with or without the use of Pulmozyme. I tend to go with the conclusion that the effects you've listed don't relate directly to Pulmozyme. Please see <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/info/prescribing.jsp
">http://www.pulmozyme.com/info/prescribing.jsp
</a>
"Mortality rates observed in controlled trials were similar for the placebo and Pulmozyme treated patients. Causes of death were consistent with progression of cystic fibrosis and included apnea, cardiac arrest, cardiopulmonary arrest, cor pulmonale, heart failure, massive hemoptysis, pneumonia, pneumothorax, and respiratory failure."

Also consider that Pulmozyme doesn't function systemically to thin mucus...thus, the great appeal of other inhaled meds such as TOBI and AZLI. Consider the renal side effects of IV tobramycin vs. inhaled TOBI. The side effects are lessened and pseudomonas is treated directly.
 
K

kitomd21

New member
Not sure where you actually read that these are known potential side effects of Pulmozyme use. The studies with Pulmozyme and the concerns you mentioned can likely relate to normal progression of the disease itself - NOT necessarily from Pulmozyme use. Take into consideration that an individual with cystic fibrosis is prone to any of these events - with or without the use of Pulmozyme. I tend to go with the conclusion that the effects you've listed don't relate directly to Pulmozyme. Please see <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/info/prescribing.jsp
">http://www.pulmozyme.com/info/prescribing.jsp
</a>
"Mortality rates observed in controlled trials were similar for the placebo and Pulmozyme treated patients. Causes of death were consistent with progression of cystic fibrosis and included apnea, cardiac arrest, cardiopulmonary arrest, cor pulmonale, heart failure, massive hemoptysis, pneumonia, pneumothorax, and respiratory failure."

Also consider that Pulmozyme doesn't function systemically to thin mucus...thus, the great appeal of other inhaled meds such as TOBI and AZLI. Consider the renal side effects of IV tobramycin vs. inhaled TOBI. The side effects are lessened and pseudomonas is treated directly.
 
K

kitomd21

New member
Not sure where you actually read that these are known potential side effects of Pulmozyme use. The studies with Pulmozyme and the concerns you mentioned can likely relate to normal progression of the disease itself - NOT necessarily from Pulmozyme use. Take into consideration that an individual with cystic fibrosis is prone to any of these events - with or without the use of Pulmozyme. I tend to go with the conclusion that the effects you've listed don't relate directly to Pulmozyme. Please see <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/info/prescribing.jsp
">http://www.pulmozyme.com/info/prescribing.jsp
</a>
"Mortality rates observed in controlled trials were similar for the placebo and Pulmozyme treated patients. Causes of death were consistent with progression of cystic fibrosis and included apnea, cardiac arrest, cardiopulmonary arrest, cor pulmonale, heart failure, massive hemoptysis, pneumonia, pneumothorax, and respiratory failure."

Also consider that Pulmozyme doesn't function systemically to thin mucus...thus, the great appeal of other inhaled meds such as TOBI and AZLI. Consider the renal side effects of IV tobramycin vs. inhaled TOBI. The side effects are lessened and pseudomonas is treated directly.
 
K

kitomd21

New member
Not sure where you actually read that these are known potential side effects of Pulmozyme use. The studies with Pulmozyme and the concerns you mentioned can likely relate to normal progression of the disease itself - NOT necessarily from Pulmozyme use. Take into consideration that an individual with cystic fibrosis is prone to any of these events - with or without the use of Pulmozyme. I tend to go with the conclusion that the effects you've listed don't relate directly to Pulmozyme. Please see <a target=_blank class=ftalternatingbarlinklarge href="http://www.pulmozyme.com/info/prescribing.jsp
">http://www.pulmozyme.com/info/prescribing.jsp
</a><br />
<br />"Mortality rates observed in controlled trials were similar for the placebo and Pulmozyme treated patients. Causes of death were consistent with progression of cystic fibrosis and included apnea, cardiac arrest, cardiopulmonary arrest, cor pulmonale, heart failure, massive hemoptysis, pneumonia, pneumothorax, and respiratory failure."
<br />
<br />Also consider that Pulmozyme doesn't function systemically to thin mucus...thus, the great appeal of other inhaled meds such as TOBI and AZLI. Consider the renal side effects of IV tobramycin vs. inhaled TOBI. The side effects are lessened and pseudomonas is treated directly.
<br />
 
T

triples15

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

Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!</end quote></div>

I think I am one of the few people who use mucomyst (acetylcysteine) as well as Pulmozyme. I neb mucomyst twice daily and Pulmozyme once.

I have used Mucomyst for as long as I can remember. I have tried Hypertonic Saline many times but still get much more up with Mucomyst so I've stuck with it. It's relatively inexpensive because it comes in generic.

There is also something called Fizzy NAC (n-acetylcysteine) which are effervescent tablet that are dissolved in water and then drank. There is a lot of info on fizzy NAC on Amy's (noexcuses) blog. I'm am currently thinking about trying the fizzy NAC, in addition to nebbing mucomyst.

As far as the Pulmozyme goes, I think Katie posted some good info. It looks like maybe the info you saw could have been more in reference to the progression of CF rather than side effects of Pulmozyme.
 
T

triples15

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

Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!</end quote></div>

I think I am one of the few people who use mucomyst (acetylcysteine) as well as Pulmozyme. I neb mucomyst twice daily and Pulmozyme once.

I have used Mucomyst for as long as I can remember. I have tried Hypertonic Saline many times but still get much more up with Mucomyst so I've stuck with it. It's relatively inexpensive because it comes in generic.

There is also something called Fizzy NAC (n-acetylcysteine) which are effervescent tablet that are dissolved in water and then drank. There is a lot of info on fizzy NAC on Amy's (noexcuses) blog. I'm am currently thinking about trying the fizzy NAC, in addition to nebbing mucomyst.

As far as the Pulmozyme goes, I think Katie posted some good info. It looks like maybe the info you saw could have been more in reference to the progression of CF rather than side effects of Pulmozyme.
 
T

triples15

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

Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!</end quote></div>

I think I am one of the few people who use mucomyst (acetylcysteine) as well as Pulmozyme. I neb mucomyst twice daily and Pulmozyme once.

I have used Mucomyst for as long as I can remember. I have tried Hypertonic Saline many times but still get much more up with Mucomyst so I've stuck with it. It's relatively inexpensive because it comes in generic.

There is also something called Fizzy NAC (n-acetylcysteine) which are effervescent tablet that are dissolved in water and then drank. There is a lot of info on fizzy NAC on Amy's (noexcuses) blog. I'm am currently thinking about trying the fizzy NAC, in addition to nebbing mucomyst.

As far as the Pulmozyme goes, I think Katie posted some good info. It looks like maybe the info you saw could have been more in reference to the progression of CF rather than side effects of Pulmozyme.
 
T

triples15

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

Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!</end quote>

I think I am one of the few people who use mucomyst (acetylcysteine) as well as Pulmozyme. I neb mucomyst twice daily and Pulmozyme once.

I have used Mucomyst for as long as I can remember. I have tried Hypertonic Saline many times but still get much more up with Mucomyst so I've stuck with it. It's relatively inexpensive because it comes in generic.

There is also something called Fizzy NAC (n-acetylcysteine) which are effervescent tablet that are dissolved in water and then drank. There is a lot of info on fizzy NAC on Amy's (noexcuses) blog. I'm am currently thinking about trying the fizzy NAC, in addition to nebbing mucomyst.

As far as the Pulmozyme goes, I think Katie posted some good info. It looks like maybe the info you saw could have been more in reference to the progression of CF rather than side effects of Pulmozyme.
 
T

triples15

Super Moderator
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lety</b></i>
<br />
<br />Thanks for everyone's input on this difficult decision. Does anyone else have any experience with Mucomyst (acetylcysteine)? We had never heard of it until this post and will be asking the docs about it on her next clinic. Thanks again!</end quote>
<br />
<br />I think I am one of the few people who use mucomyst (acetylcysteine) as well as Pulmozyme. I neb mucomyst twice daily and Pulmozyme once.
<br />
<br />I have used Mucomyst for as long as I can remember. I have tried Hypertonic Saline many times but still get much more up with Mucomyst so I've stuck with it. It's relatively inexpensive because it comes in generic.
<br />
<br />There is also something called Fizzy NAC (n-acetylcysteine) which are effervescent tablet that are dissolved in water and then drank. There is a lot of info on fizzy NAC on Amy's (noexcuses) blog. I'm am currently thinking about trying the fizzy NAC, in addition to nebbing mucomyst.
<br />
<br />As far as the Pulmozyme goes, I think Katie posted some good info. It looks like maybe the info you saw could have been more in reference to the progression of CF rather than side effects of Pulmozyme.
 
S

sdelorenzo

Guest
My daughter has been inhaling mucomyst for 5 years. She does not tolerate hypertonic saline but has used pulmozyme since she was one. My son was one month when he started pulmozyme. Both were for preventative. We have been pleased with mucomyst and pulmozyme.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
My daughter has been inhaling mucomyst for 5 years. She does not tolerate hypertonic saline but has used pulmozyme since she was one. My son was one month when he started pulmozyme. Both were for preventative. We have been pleased with mucomyst and pulmozyme.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
My daughter has been inhaling mucomyst for 5 years. She does not tolerate hypertonic saline but has used pulmozyme since she was one. My son was one month when he started pulmozyme. Both were for preventative. We have been pleased with mucomyst and pulmozyme.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
My daughter has been inhaling mucomyst for 5 years. She does not tolerate hypertonic saline but has used pulmozyme since she was one. My son was one month when he started pulmozyme. Both were for preventative. We have been pleased with mucomyst and pulmozyme.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
S

sdelorenzo

Guest
My daughter has been inhaling mucomyst for 5 years. She does not tolerate hypertonic saline but has used pulmozyme since she was one. My son was one month when he started pulmozyme. Both were for preventative. We have been pleased with mucomyst and pulmozyme.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 13 months no cf
 
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