pulmozyme

[tracycf3379]

Hi, I am a 25 year old female living with CF, and I am extremely healthy with mainly pancrease problems. Lately, however, my nurse has prescribed me the pulmozyme inhalation treatments daily for prevention. My concern is that I don't have problems with breathing until I am actually doing the treatment. Does this sound familiar to anyone?

 

[tracycf3379]

Hi, I am a 25 year old female living with CF, and I am extremely healthy with mainly pancrease problems. Lately, however, my nurse has prescribed me the pulmozyme inhalation treatments daily for prevention. My concern is that I don't have problems with breathing until I am actually doing the treatment. Does this sound familiar to anyone?

 

[anonymous]

Did they say why you need to take pulmozyme? I have been taking it for about a year now and my doctors told me that all pulmozyme does is help loosen mucuos up so that it is easier to clear. It is not an antibiotic that will help keep infections away. If you have no lung problems then I understand why they precribed pulmozyme.

Dave 29 w/cf

 

[anonymous]

Did they say why you need to take pulmozyme? I have been taking it for about a year now and my doctors told me that all pulmozyme does is help loosen mucuos up so that it is easier to clear. It is not an antibiotic that will help keep infections away. If you have no lung problems then I understand why they precribed pulmozyme.

Dave 29 w/cf

 

[Dea]

Hi Tracy,
About 5 or 6 years I was put on pulmozyme as well...and had lung function in the upper 70's. It actually made my breathing worse as well...my Dr. finally took me off of it...after about 3months..and realizing it was actually making me worse. I believe it doesnt work for everyone...I would talk to your doctor if you feel it is making you worse as well! Good Luck! Take Care
Dea
31 w/CF

 

[Dea]

Hi Tracy,
About 5 or 6 years I was put on pulmozyme as well...and had lung function in the upper 70's. It actually made my breathing worse as well...my Dr. finally took me off of it...after about 3months..and realizing it was actually making me worse. I believe it doesnt work for everyone...I would talk to your doctor if you feel it is making you worse as well! Good Luck! Take Care
Dea
31 w/CF

 

[miesl]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Dea</b></i><br>It actually made my breathing worse as well<hr></blockquote>

My boyfriend had the same experience when they started him on Pulmozyme last January. His PFTs tanked... and IV antibiotics didn't help. However, the doc just poo-poo-ed the "Is it the Pulmozyme?" questions. Funny, he got better after he stopped doing the pulmozyme. I think it really depends on the person. Some people think it's the most amazing thing ever created... and for others it just isn't.

 

[miesl]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Dea</b></i><br>It actually made my breathing worse as well<hr></blockquote>

My boyfriend had the same experience when they started him on Pulmozyme last January. His PFTs tanked... and IV antibiotics didn't help. However, the doc just poo-poo-ed the "Is it the Pulmozyme?" questions. Funny, he got better after he stopped doing the pulmozyme. I think it really depends on the person. Some people think it's the most amazing thing ever created... and for others it just isn't.

 

[anonymous]

This is quite interesting to me. I would like to hear some positive responses as a result of taking Pulmozyme, if there are any. My concern is for my 4 year old son who has been taking it for a year (and I don't know if there is an end in sight for this routine). The thing is, he is taking it because he has some atelectasis in part of his lung but the Pulmozyme is not "fixing" that problem, so it is more for future prevention to protect the rest of his lungs. Not ever had a lung infection and so far his cultures look good. My son is 4 and can't really explain if he feels a difference when he takes Pulmozyme. And he is too young to have PFTs.
Thanks for any input!
Jena

 

[anonymous]

This is quite interesting to me. I would like to hear some positive responses as a result of taking Pulmozyme, if there are any. My concern is for my 4 year old son who has been taking it for a year (and I don't know if there is an end in sight for this routine). The thing is, he is taking it because he has some atelectasis in part of his lung but the Pulmozyme is not "fixing" that problem, so it is more for future prevention to protect the rest of his lungs. Not ever had a lung infection and so far his cultures look good. My son is 4 and can't really explain if he feels a difference when he takes Pulmozyme. And he is too young to have PFTs.
Thanks for any input!
Jena

 

[Emily65Roses]

I only have positive reactions to Pulmozyme. I have been taking it since it came out on the market when I was 9 years old. I can't really say it makes my life "easier" based on positive reactions, but based on elimination. If I don't take the Pulmo, I notice pretty damn fast that I skipped it. I feel worse, and more easily winded. I usually cough in a more dry and exhausting way, etc. It's not like when I take it I suddenly feel wonderful, but if I forget to do it, it's quite obvious to me. It's a pain in the butt, as is any med that takes time and energy, but I love it as much as one can love a medication. I guarentee I'd be in a lot worse shape if it wasn't for the Pulmo every day. It's not right for everyone, but it works "wonders" for me.

 

[Emily65Roses]

I only have positive reactions to Pulmozyme. I have been taking it since it came out on the market when I was 9 years old. I can't really say it makes my life "easier" based on positive reactions, but based on elimination. If I don't take the Pulmo, I notice pretty damn fast that I skipped it. I feel worse, and more easily winded. I usually cough in a more dry and exhausting way, etc. It's not like when I take it I suddenly feel wonderful, but if I forget to do it, it's quite obvious to me. It's a pain in the butt, as is any med that takes time and energy, but I love it as much as one can love a medication. I guarentee I'd be in a lot worse shape if it wasn't for the Pulmo every day. It's not right for everyone, but it works "wonders" for me.

 

[cfgirl38]

I notice right away if I miss my Pulmozyme too. It works really well for me. I have been on it for 2 yrs now. I get extremely winded the next day if I miss. Eva

 

[cfgirl38]

I notice right away if I miss my Pulmozyme too. It works really well for me. I have been on it for 2 yrs now. I get extremely winded the next day if I miss. Eva