Pulmozyme Twice a Day

[scrapper1264]

My son went to his CF appt yesterday and his pfts dropped 5-10% (FEV1 75) from his last visit there 6 months ago. Dr changed his pulmozyme from once a day to twice a day. He went to a conference last fall and learned that pulmozyme can be more effective than hypertonic saline. I spoke to his other dr (son goes to 2 different clinics) and dr said that was fine, but if we had to skip one (time constraints) it should be the pulmozyme since it stays in his system longer than the saline. Any others do pulmo 2x/day?

 

[Aboveallislove]

I believe there is minimal benefit absent pretty bad lungs...we pushed to go to 2x a day prophlactically and were told no. If you read the package insert it gives the stats on the lung change 1x versus 2x. I'll see if I can figure out the presentation and find a link...if it were me I'd do if possible since it can he some.

 

[2005CFmom]

My daughter has been on Pulmozyme twice daily for about 2 years. She had a rough year, dropping from over 110%PFT to PFTs in the 80%'s. She started inhaled Vanco and later her doctor increased Pulmozyme to twice a day. It has taken a while but her PFT's are now over 100% and she is no longer doing the Vanco, but is still on Pulmozyme twice a day.

And I think the studies show that the higher your lung function >85% the more benefit you get from doing Pulmozyme twice a day.

Here is a link to the prescribing information.

http://www.gene.com/download/pdf/pulmozyme_prescribing.pdf

Quote from Prescribing Information:

1. "Patients with baseline FVC > 85% may also benefit from twice a day dosing (see Table 1). "
   

 

[azdesertrat]

I was in the pilot program for Pulmozyme back in the early/mid 90's.
The whole time I was on Pulmozyme, I did it twice a day. That's how my doc prescribed it.
I had a dramatic turn-around when I started using Pulmozyme.
Honestly, I believe it played a huge role in my survival until I could receive a transplant.

 

[TreasureGoddess]

We've been on twice a day Pulmozyme for a long time and my son's got high PFT's (in mid 90%). My son can tell a difference on the days he's only done one dose or missed for a few days vs other nebulized meds. If we're in a hurry, he always does Pulmozyme twice a day and hypertonic saline is more of an add-in when he's congested and needs help couging things up.

 

[RiverRat]

We have done Pulmozyme twice a day periodically. It does help him tremendously. We also wait for about 10 minutes after he is finished the pulmozyme to let it sit in his lungs and work before we start his airway clearance. I have no medical backing for that, it is just something we do because we like to maximize the contact time pulmozyme has with his lungs.

Hope this helps.

 

[scrapper1264]

Thank you everyone for the helpful info. It sounds like it will be worthwhile waking up earlier! He started the extra dose this morning so we will see what happens.