Pulmozyme

[beyerdug]

I am still trying to get over an infection and my doctor perscribed me to take pulmozyme 3 times a day a little over a week ago. I actually was feeling great before takeing it but a few days after my treatments I started feeling sick again. Now I am doing the rollercoaster each day with feeling fine one minute and wanting to stay in bed the next. My lungs feel worn out and tender. I actually feel like it makes me worse. I don't notice that I cough more or that my coughs are more productive since takeing pulmozyme. I am baffled by the results. Any and all comments are welcome.
Thanks.

 

[Emily65Roses]

I've only ever regularly done it once a day. There was a time or two where I was sicker and would take it twice a day... but that only lasted for a few days at a time, max. I've never even heard of doing it 3 times a day.

 

[julie]

mark does it regularly once a day, but just as em said, when he's been sick the doc. ups it to twice a day. It makes him feel worse after the treatment because the secretions are thin and he coughs up a lot of crap... but then later in the day he feels ok.

I've never heard of someone being allergic to pulmozyme, but maybe you just have a sensitivity to it? Or maybe even an allergy???

Have you ever taken it before this or is this the first time? Are you also taking it with Tobi or colistin?

Kind of puzzling that your coughs aren't more productive or you aren't coughing more.... have you talked to the doc's about it?

 

[beyerdug]

I'm taking doxycycline orally and the pulmozyme with albuterol. This is the first time I have taken pulmozyme. I worry that 3 times a day is too much and that is why my lungs hurt. Someone else already told me that she never heard of 3 times a day. Once is usual and twice a day sometimes but never three. I will talk to my doctor today I hope. I just wanted some feedback to see how much everyone else takes.

 

[PeterC]

Doug:

Have you ever read the pharmacy insert for Pulmozyme? If I were you I would read it, you may get a clue about why you are feeling the way you do.

If you don't have the insert Google Pulmozyme to find it.

Hope you feel better soon!


PeterC 57 CF

 

[Marjolein]

I am on Pulmozyme 2 times a day for 2 or more years now. Before that i had it ones a day and twice when i got sick. My doc doesn't want me to use it 3 times, even when twice doesn't work sometimes. I don't know why she doesn't want me to use it more though..

Good luck!

 

[anonymous]

I used it three times a day when I was in the hopital. I didn't notice any side affects.

 

[princessjdc]

I do pulmozyme 1 time a day, my paper about pulmo says you only take once, so thats what I do, there was a few times I took it twice before I read about taking it only once. Im shocked that some you do it twice or even three times a day.

 

[anonymous]

What do the papers say about taking pulmozyme 3x a day? I did read that when it was in the trial phase, 1x a day proved just as effective as 2x. Is that what you are referring to?

 

[JennifersHope]

When I am a good girl and do my meds perfectly. I take pulmozyme twice a day. I notice a big difference doing it twice a day. My insurance company on the other hand said they don't want me on it two times a day.. *double the cost*

 

[NoExcuses]

Package insert says those with FEV1's over 75% benefit from BID dosing.

Also those over a certain age - I can't remember off the top of my head - 21 or so benefit from BID dosing as well.

Since my FEV1 is 97% and I'm over 21, I do it BID.

My doc does a prior auth stating that the PI recommends dosing of BID and insurance has to cover what the PI says. So they must pay!!!

 

[Lilith]

I do it once a day, but recently, my doc has told me to stop it altogether for a week and just do my hypertonic instead, to see which works better and if I notice a difference without the pulmozyme. Personally, I think the HS works a lot better!

 

[beyerdug]

I talked to my nurse today. I explained what I was experiencing and she relayed the info to the doc. He said I need to continue 3 times a day until my next checkup on June 12. My insurance pays for it but only one box at a time. Thats ten days at 3x per day and I pay $25 each time I refill. Seems to me if once a day is normal I could save $50 a month. I must do as doc orders for now though.

 

[ej0820]

I take it once a day with albuterol. This has been my first time on it. I have the same feeling as you though, doug. It made me feel like I was getting a little sicker than I was to begin with, but I assumed it was just working. Now my good days and bad days are just a little more exaggerated. Like, if I'm having a hard time with my breathing and coughing...then it's a super crappy day! Other days when I really notice a difference, I feel great.


Go figure.

 

[blindhearted]

I take it 2 times a day for as long as I remember. I believe since I've been on it, but not for certain since I've been on it for so long. I have never been on or heard of it 3 times a day.

 

[BaylorCrew07]

twice a day for the past 6 months or so; that's what my doc wants me to do from now on

 

[JazzysMom]

When I first used it I was already quite sick & it made me feel like I was literally "drowning" in my own body. I was & have only used it once a day. My doctor does not want me using it more than that mainly because of my history of hemoptysis & once a day seems to work well for me. Once I was "cleared" out I never had that terrible "drowning" feeling again even when I got sick again!