Taking Pulmozyme? Yes or No.

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albino15

New member
I'm wondering just how many people are or are not taking Pulmozyme? I vaguely remember being on it briefly as a child.
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2

2005CFmom

Super Moderator
My 15 year old has been on it since diagnosis (8 years old). She was nebbing once a day, but her doctor recently increased it to twice a day.
 
A

Aboveallislove

Super Moderator
Our 3 1/2 year old has been on it since about 3 months old. He nebulizes it 1x a day, after Xopenex and hyper-tonic saline, in a separate nebulizer cup. I strongly recommend getting on it. Pulmoyzme "cuts" up the DNA in CF mucus, making it easier to dislodge/cough.
 
M

MichaelL

New member
I tried Pulmozyme but it didn't work for me. Every time I used it, I would cough up blood the next day. I find hypertonic saline works better for me. Based on what I've seen on here, I think I'm in the minority.

One of my doctors mentioned the use of Pulmozyme vs. hypertonic saline seems to vary by country.
 
J

JennyCoulon

New member
Both of my boys are on it. My oldest who is 13 started it when he was 5 and our middle son who is 7 has been on it for about a year. It seems to help make the mucus thinner .
 
4

4hats

New member
I take it once a day. Pulmozyme can be very expensive without insurance. Without insurance it costs roughly $2500 per month. With insurance, $25 per month for me.
 
V

Vaultboy

New member
sweetninis said:
how much does it cost you a month? i dont know if pumozymes are available in my country
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Hi sweetninis, pulmozyme is produced by a subsidiary of "hoffmann/ la-roche". Thats a pretty big pharma company so it should be available in your country. BUT you should check if your insurance or healthcare system (whatever you have in pakistan) covers the cost, because its pretty expensive. In austria (where i live) on package with 30 ampulles cost 1000€, but thankfully the social healthcare pays it.
 
R

Ratatosk

Administrator
Staff member
One of my friends, whose kids go to U of MN recently switched one to Pulmozyme. They'd been using mucomyst on the youngest.
 
M

MichaelL

New member
If I remember correctly, Pulmozyme in Canada is about CAN$1,100 for a four-week supply. Very expensive compared to hypertonic saline, which is about CAN$14 for the same period.
 
A

Aboveallislove

Super Moderator
yes, it is very expensive. But it is completely different than hyper-tonic saline. Hyper-tonic saline hydrates the airways, while pulmyzyme "cuts up" the DNA in the mucus. Our son (3.5) is on both, which is what I recommend.
 
C

calebf

New member
I took Pulmozyme once a day up until 2-3 years ago, now I take it twice a day. I've been on it since it was approved. At some point I'd like to cut back down to once a day, but I never plan to go off of it.

I have their co-pay card (on top of my insurance) which brings my prescription down to $30 (I believe I was paying $50 before) - http://www.pulmozyme.com/insurance/copay-card.html

For those taking Pulmozyme and not feeling like it's doing much I recommend looking into Magnesium supplementation based on this clinical trial - http://thorax.bmj.com/content/61/11/962.abstract - I started taking 160mg of magnesium citrate twice a day. I've definitely seen a difference in efficacy.
 
A

Aboveallislove

Super Moderator
Thanks! Is dNase the same as Pulmozyme? If not, is there a reason the same theory would apply given that dNase and Pulmozyme would have different chemical operations.
 
A

azmaveth

New member
Was on it earlier this year after original diagnosis. After about 6 weeks, the doctor said it wasn't really making a difference for me, so I haven't taken it since maybe the beginning of April. I do, however, have several boxes of it in my fridge in case I need it later. Although I am now out of the Marine Corps, they at least made sure that I had an emergency supply in case I needed it until I got my own medical insurance.
 
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