Pulmozyme

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MiahsMommy

New member
Hello,, my daughter just got put on pulmozyme (6month old) and wondering if it's safe? I was reading older posts on it and looks like the negative out numbered the positives. Please tell me your experience on the med and how old you were when you started?
 
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MiahsMommy

New member
Hello,, my daughter just got put on pulmozyme (6month old) and wondering if it's safe? I was reading older posts on it and looks like the negative out numbered the positives. Please tell me your experience on the med and how old you were when you started?
 
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TreasureGoddess

Member
My kiddo's been on pulmozyme for most of his life. We've not had any side effects or issues. It's made a big difference in helping his lung functions stay high. Ask your doctor if you have concerns, what were the issues you were hearing about? My kid started nebulized pulmozyme when he was 3.5 months old I'm pretty sure. I do know it was years and years ago, not exactly sure how early. He actually relaxes and starts to fall asleep each night when he does the final nebulized treatment of the night.

Good luck and hope your little one does well and stays healthy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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TreasureGoddess

Member
My kiddo's been on pulmozyme for most of his life. We've not had any side effects or issues. It's made a big difference in helping his lung functions stay high. Ask your doctor if you have concerns, what were the issues you were hearing about? My kid started nebulized pulmozyme when he was 3.5 months old I'm pretty sure. I do know it was years and years ago, not exactly sure how early. He actually relaxes and starts to fall asleep each night when he does the final nebulized treatment of the night.

Good luck and hope your little one does well and stays healthy. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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MiahsMommy

New member
Hi! Thanx for the response.. Well she is currently hospitalized for liver issues. And when they did an xray they noticed cloudiness (mucus) In her lungs, on top of that she's been sick most of this month (frequent coughing extra mucus in throat and nose). So her pulmonary doc decided to start her on it. She's currently doing albuterol and now pulmozyme. Would it be best to do pulmozyme in the morning or night time?
 
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MiahsMommy

New member
Hi! Thanx for the response.. Well she is currently hospitalized for liver issues. And when they did an xray they noticed cloudiness (mucus) In her lungs, on top of that she's been sick most of this month (frequent coughing extra mucus in throat and nose). So her pulmonary doc decided to start her on it. She's currently doing albuterol and now pulmozyme. Would it be best to do pulmozyme in the morning or night time?
 
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kitomd21

New member
Hi there! DD has been on Pulmozyme since about 9 mos old. Our first CF center didn't want to start any patients until they were over two years old. For various other reasons, we switched clinics and the new center started her on Pulmozyme right away. Her lungs were showing signs of "changes" at that time. A year after starting Pulmozyme, the XRAYS showed improvement. Glad we started her when we did! She hasn't had any side effects - no hoarseness of voice or other.
 
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kitomd21

New member
Hi there! DD has been on Pulmozyme since about 9 mos old. Our first CF center didn't want to start any patients until they were over two years old. For various other reasons, we switched clinics and the new center started her on Pulmozyme right away. Her lungs were showing signs of "changes" at that time. A year after starting Pulmozyme, the XRAYS showed improvement. Glad we started her when we did! She hasn't had any side effects - no hoarseness of voice or other.
 
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kitomd21

New member
BTW...we haven't specifically been advised, but I did hear that it's best to neb Pulmozyme at night so it sits in the lungs longer...
 
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kitomd21

New member
BTW...we haven't specifically been advised, but I did hear that it's best to neb Pulmozyme at night so it sits in the lungs longer...
 
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marisalynn

New member
I have been on Pulmozyme pretty much since it came out. I was probably around 8 or 9 years old. Have never had any problems with it. It is one of the few meds that I take that actually makes me feel better immediately rather than some that are more for the long-term like TOBI. I take it once a day, but when I have an exacerbation or my chest is particularly tight, I sometimes take it twice a day, which my doctor said is fine.

Marisa 24 w/CF, mommy to beautiful 4-month old baby girl, Annalynn-no CF
 
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marisalynn

New member
I have been on Pulmozyme pretty much since it came out. I was probably around 8 or 9 years old. Have never had any problems with it. It is one of the few meds that I take that actually makes me feel better immediately rather than some that are more for the long-term like TOBI. I take it once a day, but when I have an exacerbation or my chest is particularly tight, I sometimes take it twice a day, which my doctor said is fine.

Marisa 24 w/CF, mommy to beautiful 4-month old baby girl, Annalynn-no CF
 
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Printer

Active member
If your DD's Doctor has Rx something for here and you have questions of safety, you should be talking to her Doctor. If you don't trust her Doctor, you need to change Clinics.

This is a great support group, with great people and questions like, do you neb at night or during the day, are very appropiate here. You will get excellent advise. Something as serious as the safety of your DD, however, should be answered by your Doctor or Pharmacy.
 
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Printer

Active member
If your DD's Doctor has Rx something for here and you have questions of safety, you should be talking to her Doctor. If you don't trust her Doctor, you need to change Clinics.

This is a great support group, with great people and questions like, do you neb at night or during the day, are very appropiate here. You will get excellent advise. Something as serious as the safety of your DD, however, should be answered by your Doctor or Pharmacy.
 
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JennyCoulon

New member
Our oldest who is 12 was started on Pulmozyme when he was 5 as a way to help thin the mucus. We have never had any issues or side effects and have only seen good results. Our middle child which is our youngest with CF will be 7 in May and he was just put on it about 6 months ago. I can tell the mucus is thinner with him also especially when he runs around and gets gunk in his throat that he has to clear he doesn't have such a hard time b/c it isn't as thick. Just remember with CF everything is different for everyone and you can't always go by what you read. It is always good to check especially when you are just introduced to this disease. Good luck
 
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JennyCoulon

New member
Our oldest who is 12 was started on Pulmozyme when he was 5 as a way to help thin the mucus. We have never had any issues or side effects and have only seen good results. Our middle child which is our youngest with CF will be 7 in May and he was just put on it about 6 months ago. I can tell the mucus is thinner with him also especially when he runs around and gets gunk in his throat that he has to clear he doesn't have such a hard time b/c it isn't as thick. Just remember with CF everything is different for everyone and you can't always go by what you read. It is always good to check especially when you are just introduced to this disease. Good luck
 
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Mommafirst

Guest
I think pulmozyme is a wonderful drug -- for us the benefits far outweigh the negatives. In fact, I don't see much in the way of negatives...other than the time (which is less than most nebbed meds).
 
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Mommafirst

Guest
I think pulmozyme is a wonderful drug -- for us the benefits far outweigh the negatives. In fact, I don't see much in the way of negatives...other than the time (which is less than most nebbed meds).
 
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