Pulmozyme in AM or PM?

[Aboveallislove]

When do you/your kids do Pulmozyme? AM or PM? What were you told? We originally did in PM but honestly can't remember why--thought we were told that. Then someone told me they were told to do in AM b/c then the kiddos are moving around all day to get the mucus moving after the Pulmozyme. Asked at next CF appointment and nurse confirmed that point--do in am for that reason. But it seems I've seen others say PM on here. Thoughts? Any published research on this??

 

[kitomd21]

I honestly cannot recall being advised either way - though we've always done it in the evening. IMO, PM treatment allows the med to sit and 'work' longer as we aren't as active while we sleep (i.e., less mucus expelled which would cause med loss if expelled with mucus - the mucus sits and thus the Pulmozyme sits with it).

 

[BikerEd]

Okay I have absolutely no scientific proof, evidence, etc…. I used to have to do it twice a day so it really didn’t matter… but when I started I did it once a day and I did it in the evening, why…. Because that worked for me. I can honestly tell you that when I first started and it was once a day, and now that I am back to once a day physically I do not notice a difference as to the time a day. However, I find that when I do it after my day is done, maybe after dinner maybe before when I’m relaxed it works best. I just recently switched over to night shift for short term project I’m now doing it in the AM. But, I’m home from work, I‘ve seen my wife and kids off to work had dinner at Five in the morning (I dig that since I hate the word breakfast) I do not worry about all the stuff I gotta do when this neb is done just watch some TV, read a little and then go to bed. But Again, I’m Forty and refuse to admit that I’ve been doing it (Plumo) for 20 some odd years. find out what works best for your CF kid(s) would be my 2 cents, because maybe they would prefer lunchtime, or homework time I know I hate having to get up earlier to do nebs, and I don’t want it to interfere with my play time..

 

[Ratatosk]

I don't think there's a "right answer" to this question. What ever works best. We've done evening as well. Mainly because ds does 3 treatments a day and when he's on his tobi months there just doesn't seem to be enough time to do it in the early a.m. or after school. I like to think, too that it tends to work better over night. However, some people do better if they do their morning treatments, get things moving and cleared out so they can breathe better and/or expell mucus while exercising later in the morning.

 

[JENNYC]

I agree, I don't think there is a right answer either. My doctors have told me that it does not matter when it was done. Ed made a lot of sense. We do Abby's at night simply because I feel like she is pushed so hard in the morning already trying to get ready for school. I feel like it is better tolerated from her at night, just because who wants all that stuff shoved in their face when you first wake up. And at my house it is go go go so we can get to school on time. We wake up, cuddle time while she is doing her inhaler(ventolin) and then she goes to the vest and I go fix breakfast, we eat, dress, and run! LOL!! Is your little man starting school this year? Best wishes!!!

 

[Aboveallislove]

Thanks everyone. That is very reassuring and makes perfect sense. In fact, after I posted I thought "I hope they don't say evening is better b/c that really doesn't work well for our schedule." We have lazy mornings--ds sleeps until he wakes and then we do his Zantac and then Xopenex and hyper-sal with vest, then breakfast and then Pulmozyme after. It works well b/c the compressor doesn't withstand 3 back-to-back treatments, he doesn't like 3 in a row and he's fine with some more cuddle time after breakfast, but we finish up around 1030ish. (We're homeschooling though so that won't be an issue--starting this year but with a modified curriculum based on 3 different ones I like, taking bits and pieces from each.) And ds loves his evenings for more play time etc and I can't imagine doing 3 then. Thanks again!
Has Abby started school yet for the year?

 

[BikerEd]

Whoa! forget school! you mentioned Cuddle time... I love Cuddle time and I'm old! I always LOVE Cuddle Time after Neb.. LOL sorry just being funny and you soooo got my point.....

 

[Shelly43]

I've found that on school mornings especially it is easier to do pulmozyme in the evenings? Just one less thing to do? the Doctor has said it doesn't matter. But I can see where the moving around might be helpful to move things out... Hmmm, lol

 

[TarHeelBlue2007]

I've asked clinician-scientists this question, and the overriding principle is that you want to give the medicine time to work. My old routine was to do albuterol, pulmozyme, hypertonic saline, and then tobi (if I was on it), but I was told that by doing hte hypertonic saline immediately after the pulmozyme, I was basically washing out the pulmozyme.

I seem to recall that Pulmozyme ideally needs about 20-30min to work, and the effect is usually gone by 2-4h, depending on a number of factors. So, I personally think it's a good idea to sit tight and avoid exercise or hyper-sal for 30min after a dose, after which you can give hyper-sal or start playing/being active.
Considering all these things, I personally do my pulmozyme at night, just b/f bed. But, if one is pressed for time, Pulmozyme at any time is better than no Pulmozyme.
Hope this helps!

edit: Note: "active" above ("playing/being active") means vigorous physical activity...walking around the house or into school shouldn't affect the medicine's ability to work b/c those things don't often make you cough more than usual. you're not clearing the medicine out by doing these things.

 

[LReyome28]

After this recent admission, because of the severity of how this one happened (pneumonia and sepsis), I am now doing it twice a day. So far I have had a lot less coughing during the day and not having to cough during the night because of it, but that also may be because of other factors like the addition of Tobi to my regimen as well as Duo-Neb instead of Albuterol

 

[JENNYC]

Ed you are too funny!! I love reading your posts!!! And Abby starts back to school Monday. She cannot wait to see her friends! She is my little social butterfly! And you are very brave for homeschooling...I could never do that. I'm a little short on the patience side and don't even want to think about me teaching someone something. LOL