pulmozyme

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catboogie

New member
hi.

do you take pulmozyme once a day or twice a day? i ask because from what i've heard there aren't medical studies that show a significant difference in patient's using it once or twice a day. at my last dr appt my dr suggested trying it twice a day to see if it would make a significant difference.

thoughts?

laura
 
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coltsfan715

New member
I have taken it once a day for over 10 years now. I personally feel a difference when I do take it versus not taking it, but it took some time once I started taking it for me to notice a difference. I don't think I noticed a big difference until several months of being on it. Now I can honestly say it is one of the meds that I value the most out of the ones I take for my respiratory care.

I hope that it helps you - doing it twice a day. Good Luck.

Lindsey
 
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blindhearted

New member
I have always taken pulmozyme twice a day. not sure if there are any studies on this. I cant say if it makes a difference, once vs. twice because I've always done it twice a day.
 
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Allisa35

Member
I have always taken it once a day. I've been on it several years now (probably 8 years if not longer). I personally have never noticed much of a difference taking it. But of course, being on it for so many years, maybe my body has just become accustomed to it.
 
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Marjolein

New member
Hi Laura,

My experiences with Pulmozyme
the first years, many years, i was on it i had it ones a day. Till i got worse again and it got more difficult to cough up and my doc said to do pulmozyme twice a day. That's what i have been doing now for a few years. I think it does help a bit. After that things have gotten worse again and it's really difficult to cough up now for me, i rarely cough up during the day too. So i asked my doctor if i could try it 3 times a day, but she said no. Pulmozyme isn't good to take 3 time.
Lucky for me HS came along and together with Pulmozyme, getting mucous out is a little better again.
 
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Jennifer1981

New member
I've been taking it twice a day for about 10 years now. I feel a real difference if I only take it once a day or not at all. In Feb., I tried to cut down to once a day. I started to only take it in the morning. Well, at night I would do all my regular meds and chest therapy (except the Pulmozyme). But when I would try to sleep, I would start coughing constantly. I went to the doc, and my PFT's were down. So now I'm back on twice a day with no problems.

Jennifer 24 w/CF
 
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NoExcuses

New member
There are studies. look at the package insert: <a target=_blank class=ftalternatingbarlinklarge href="http://www.gene.com/gene/common/inc/pi/pulmozyme.jsp
">http://www.gene.com/gene/common/inc/pi/pulmozyme.jsp
</a>
<b>The data suggest that the effects of Pulmozyme on respiratory tract infections in older patients (>21 years) may be smaller than in younger patients, and that twice daily dosing may be required in the older patients. Patients with baseline FVC>85% may also benefit from twice a day dosing.

Short-term dose ranging studies demonstrated that doses in excess of 2.5 mg BID did not provide further improvement in FEV1. Patients who have received drug on a cyclical regimen (i.e., administration of Pulmozyme 10 mg BID for 14 days, followed by a 14 day wash out period) showed rapid improvement in FEV1 with the initiation of each cycle and a return to baseline with each Pulmozyme withdrawal. </b>

My FEV1 is 98% so I take it twice a day. And I notice a difference when I do it twice a day vs. once a day.
 
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Rokiss12

New member
i've always taken it once a day everyother 28 days, with tobi on my off days. i definitly notice a difference when im on tobi, but thats usually it unless i forget like 2 days in a row.
 
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Momtana

New member
like Kate, I take Pulmozyme one month and Tobi the next. When I used them both I lost my voice. does anyone have a problem with hoarseness? I thought it was from something in my environment, but have started to wonder if it is the meds (inhaled and nebulized). Any thoughts?
 
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NoExcuses

New member
i alway got hoarse when I would take TOBI.

Pulmozyme used to make me a bit hoarse every once in a while when I first started. Not in the past few years, though.
 
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coltsfan715

New member
I have occasional times where I lose my voice. I have found it happens more often when I am sick and taking heavy duty meds - sometimes IVs.

I have always had a hoarse/deeper voice sometimes it is more raspy than others, but I contribute it too the inhaled meds.

Lindsey
 
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Lilith

New member
My experience has always been once a day, usually in the morning
only because at night it keeps me awake.  However, since HS
came out, I've dropped off in doing the pulmozyme because quite
frankly I think the HS does a MUCH better job of clearing me out.
 My doc's recommended that I stop the pulmozyme altogether for
about a month and see if it makes any difference.  So far, I
haven't noticed a thing.<br>
<br>
Why pay for pulmozyme when HS is so much cheaper and does a better
job?<br>
<br>
Again, just my experience.
 
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Alyssa

New member
My post is going to be similar to Lisa's --

My daughter has always done Pulmozyme once a day, twice a day if she feels more junky than usual. She is just about to start the saline (waiting for the mail order to arrive here) Her doctor said that initially they recommend keeping everything just the same as usual and just adding the HS into the routine -- he said that later on, if things continued to look good, many people or going to every-other day on the pulmozyme or stopping it all together -- so we are hoping for the same thing -- to maybe get off the pulmozyme and just do the saline.
 
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NoExcuses

New member
i would be very cautious about stopping pulmozyme.

Hypertonic salene will irritate the airways and cause the mucus to be coughed up.

While pulmozyme will actually thin the secretions.

Again, I realize every person is different. But I know pulmozyme doens't necessary make you feel great every day that you take it - and you won't notice yourself worsening right away when you stop.

Studies with pulmozyme vs. placebo show 1/4-1/3 less annual hospitalizations. That's hard to measure if you stop pulmozyme because it's difficult to determine how we all ended up in the hospital in the 1st place. And these less annual hospitalzations might not be accompanied by an overall feeling of "better." Pulmozyme increased FEV1 by 9%. To most of us, it's difficult to "feel" up or down FEV1 of 9%.

So stopping pulmozyme, you might not feel that drop of FEV1 9% or not. And that extra annual hospitalization you might not notice cuz you might attribute it to getting older, extra stress, yadi yadi.

But if you did a head to head study of patients on both pulmozyme and HTS vs. patients just on HTS, i bet patients on both meds would have less hospitalizations and higher FEV1's.

Bottomline is this - the two drugs serve two <b> drastically </b> different functions and I can't figure out why people consider them interchangeable.
 
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65rosessamurai

Guest
Isn't the "TABLE 2" in the link related to 'adverse reactions' with Pulmozyme? (i.e. chest pain, Laryngitis, Voice Alteration)
I would think that the doctors who suggest a 30 day on, 30 day off kinda routine would be seeing how their patient is taking the new drug, would you agree??
Though, I saw nothing on the link in regards to 'anti-bacterial', just manipulation of the mucous to expel it.
Just my observation, of course.
 
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NoExcuses

New member
you are correct. no anti-bacterial effects.

<b>Administration of Pulmozyme reduced the relative risk of developing a respiratory tract infection by 27% and 29% for the 2.5 mg daily dose and the 2.5 mg twice daily dose, respectively (see Table 1). </b> <a target=_blank class=ftalternatingbarlinklarge href="http://www.gene.com/gene/common/inc/pi/pulmozyme.jsp
">http://www.gene.com/gene/common/inc/pi/pulmozyme.jsp
</a>
But having less mucus means less opportunity for infection.
 
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catboogie

New member
thanks guys, your stories and information have helped me a lot. i think i may talk to my doctor again about trying it twice a day. i feel like i need to start doing something more and i really don't want to do tobi.

laura
 
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