Pulmozyme??

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anonymous

New member
I have twin babies and their pulmonoligist wants to put them on a trial or study whatever it is called for Pulmozyme because they have not yet approved it for babies and they want to try an keep their lungs as healthy as possible. So to those of you that are on this have you seen a big difference? Do you see an improvement in mucous ect? Is there anything you dont like about it? How has it worked for you?

Sorry if I have spelled it wrong!!!

Thanks
 
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anonymous

New member
I dont know how young your babies are but my son has been on pulmozyme since he was 9 months old... it seems to help him hes been pretty healthy... and he doesnt have anyside effects from it... if you have anymore questions just hollar..lol


Melissa
 
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anonymous

New member
Pulmozyme is not an antibiotic so you don't have to worry about any sort of immunities building up. It is a medication that helps clear out the lungs and has some pretty signifigant adults with children and adults. The drug has been on the market for some years (my hubbie did the very first trials for it in the early 90's) and it has been a great help. He did not use it after the trials (he was about 10-12 at the time) but in the last year the doc prescribed it and we have noticed a difference.

My husband feels that his lungs are clearer after it's use, and if he does have junk down there it is easier to cough up. He has had no adverse reactions to the medication either, and I believe that there are VERY few reactions associated with the med.

Julie
 
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jaime

New member
I have used Pulmozyme for quite some time too. Sometimes it makes my throat/voice a little hoarse after treatment. The only thing of note is that anytime I have any streaking or hemoptysis the Pulmozyme is stopped for a day or two, or at least until the hemoptysis stops. That is because some docs believe that Pulmozyme can aggravate the lungs and lead to hemoptysis. Other than that, there are no real side effects I have noticed.
 
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anonymous

New member
My daughter started Pulmazyme at four months of age. She now takes it twice a day. We noticed a definite improvement when we went from once to twice a day. She seems much clearer now, less "junkie." I do notice that she always seems a little hoarse.

I hope your doctor also let you know that Genentech, (the drug company that makes Pulmazyme) has an endowment fund that you can apply for if your co-pay is too high.

Good Luck!


Maria (mother of three daughters, the youngest Samantha w/cf)
 
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anonymous

New member
pulmozyme is usually 1x day but sometimes the doc does 2 because it helps them thin the mucus out better.i ask my doc can my daughter do it 2 a day she said no cause she has no problem getting the junk out! but if shes sick on ivs they do it 2 a day. maybe it works better for you 2 a day your doc knows whats best for you! i would think 2 a day can get pretty costly. good luck! hope this helped.
 
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anonymous

New member
My grandson was put on it as soon as he came home from the hospital and if I'm not wrong he was just about 1 and ahalf months.We have not had any problems from it as far as with adverse reactions or any other problems.We really like it like the others say he is clear and when he needs to cough it makes it easier.Also he is still on it,and thats one of breathing treatments that we would not want his dr to take away.Oh, by the way he is now going to be 4 years old.
 
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Joblazer86

New member
I started it when I was 9 I thinks and have used it for 13 yrs. know. did not have any problems till recently when I started coughing up blood
 
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anonymous

New member
Pulmozyme is an excelllent idea, the more proactive you are the better the prognosis. It does not decide the path of your disease but it will certainly make the walk easier.
 
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anonymous

New member
My daughter wen on Pulmozyne at 3 mo. She was having some acerbations early on but since then and the addition of Cromolyn Sodium nebs she has been healthy as a horse.
 
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anonymous

New member
I've also heard of being on Pulmozyme 2x daily. My son uses is 1x daily and it has done great things for his lungs!

Carey
 
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anonymous

New member
Hey,

personally, I am quite active, into sports and I find that using pulmozyme has helped me out alot. It "liquifies" secretions and makes it easier to clear your lungs out during physio or sports. So I think it is well worth it.

Take care
 
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