Pulmozyme- Give me the good, bad and the ugly

[rcq925]

Okay, I know Pulmozyme has been talked to death, but I am still on the fence about it for my daughter, so I thought I would post here to see what some of the adults think because you have probably been on it longer than anyone on the family board.

I am interested in anyone who wants to offer any opinion on Pulmozyme, good or bad. I am also specifically interest in any side effects anyone has personally had on Pulmozyme. I know that in the past I have read posts about people having lung bleeds on Pulmozyme and I have read several places that Pulmozyme does not work for everyone. With the cost factor ($1,500 per month towards my daughters's lifetime maximum insurance cap) and the fact that it is not guaranteed to help her, plus may cause her harm, we have not started Pulmozyme yet. My daughter is 2 years old and has had some lung involvment so far, so I am just trying to gather information from all sources on Pulmozyme. If anyone has any studies or links to studies they would like to share, I would love to read it.

Thanks in advance for all of you who take time to reply!!

 

[miesl]

Jeremy does not use Pulmozyme - he thought it made his mucus too liquidy and harder to cough up.

However, I know some people swear by it.

 

[Ratatosk]

Our son was put on pulmozyme last fall and I too had concerns because it was the local pulmonologist who put him on it, not our regular CF doctor and I'd heard the clinic was doing a study on pulmozyme and all their patients are put on it. I always hate the idea of adding yet another drug, I wondered about other less expensive alternatives, and I didn't see a difference in our son's health.

That said, expense shouldn't be an issue when in comes to keeping our son healthy. The extra treatment doesn't take that much longer. He gets it after his cpt treatment right before bed and it takes about 5 minutes. Haven't noticed a difference in terms of side effects. Basically, it's supposed to thin the mucus. The first time we used it, he had a sinus infection and it made his nose run. His nose never runs so it was kinda unique and thrilling for us.

Liza

 

[Diane]

I have been on Pulmozyme for years and i love it. I dont notice a huge difference when i use it, but i do however notice a difference when i dont . I always had hemoptysis problems for years , but Pulmozyme has never seemed to contribute to any of it ( thankfully). The only way to know if it helps is to try it.

 

[Faust]

It's made from chinese hamster ovaries...No lie.

 

[anonymous]

Hi.

It can cause a worsening of the lungs in a fraction of cases (25% I think), so should really only be used where the lung function of the recipient can be checked.

Info here:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/cfdocs/cftext/dnase.htm">http://www.cysticfibrosismedic...fdocs/cftext/dnase.htm</a>

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

It's made from chinese hamster ovaries...No lie.</end quote></div>


Isn't research amazing.

How do you get to the point where you look at a hamster and say hmmmmm

 

[anonymous]

Hi! I never really had lung invovlement until I was in my early 20's.....I tried it in college and had terrible achiness and dry cough associated with taking it. I really had very little mucus at that time....now that I have more mucus I find that if i take it, it does help me somewhat.

Have y'all thought about hypertonic saline? It is more natural and so many are having terrific results with it AND it cannot do damage to the lungs....it simply draws water to the surface of the lung making the secretions easier to move. It can however, be hard to tolerate for some..so, starting at a lower concentration (maybe 3%) and working up might be a good idea.

I don't want to bad mouth Pulmozyme, but why not start with something natural first? The reason HS discovered was due to the fact cf surfers had fewer exacerbations than the rest of us....extra salty water was helping!!!!

I hope this helps.
mandy

 

[Emily65Roses]

I'm one of the ones who swears by it. I was put on Pulmozyme pretty much the minute it hit the market, so to speak. I believe I was 9 (22 now). I may have been 10. So that's a good... at least 12 years on it. I love the stuff, as much as you can love a time-consuming necessary medication. I've never bled from it. If I skip a night, I know immediately the following morning when I wake up, because I feel like crap.

I've heard from other people that it can cause bleeds. Not a huge deal with CF, as long as it's not out of control. If she bleeds once, and that's too uncomfortable for you to keep going, you stop it there, end of story.

I say give the Pulmo a trial run. You can always say no after you've started if Hayley hates it, or doesn't tolerate it well. No harm in giving something like Pulmo a try. I'm starting Hypertonic Saline tonight. Doc wanted me to give it a go, see how I tolerate it. But he knows if I HATE it or it doesn't sit well, then that's the end of that. And that's fine by him, as long as I give it a fair shot first. It's not like trying it is going to cause permanent damage. She may hate it, so you stop using it, and she'll be fine again, in maximum, a few days. Or she may tolerate it well and it may make a world of difference. Seeing as it's not permanent (we're not discussing, like... ports, here), I say give it a shot. If it goes well, good. If not, you stop using it, no harm done.

 

[anonymous]

I am switching from Pulomozyme to Hypertonic Saline. (3% out of stock) I asked my Dr. if one was better than the other and he said the saline but it doesn't have a drug company backing it up so the other gets more support. It's supposed to do basically the same thing but hopefully better and there's some hope it will help with other CF issues even though it hasn't been proven. It's also a lot less expenssive (around $30) which why i should care I don't know because my insurance pays for the pulomzyme but it does matter to me...just on principle I guess. And if I can take something that's NOT a drug....wooohoooo!
Also, i tried pulmozyme once as a teen and didn't think it did a thing for me but then in my 20's here have definitely thought it helped. I would reccomend asking about the hypertonic saline.

littledebbie.........not logged in

 

[Emily65Roses]

Actually, let me add to that. I think Pulmo is great, and wouldn't stop it unless there was a good reason. But if you have a natural alternative (that isn't being sponsored by greedy CEOs), makes sense to go for that first.

If she doesn't tolerate the saline, or whatever, then you can try Pulmo if you want. But the others are right, it makes sense to try for the saline first, see how that goes.

 

[rcq925]

Thanks to everyone that has replied so far! A special thanks to Anon who pasted the link to the article on Pulmozyme! That was a really good article and actually points out some of my concerns with the Pulmozyme. Our clinic does not do the infant PFT's so until she is old enough to do the PFT's (which I have heard is about 5 to 7 dependant on the child) then how do I truly know if it is helping or hruting her if I have no way to measure lung function?

 

[Emily65Roses]

You'll get different opinions on PFTs depending who you ask. And Hayley's still pretty young, so she may not be able to articulate what she's feeling to you. But as she grows, PFTs really won't be what decides how she's doing. How she feels will.

Don't get me wrong, PFTs are good to have, good indicator, helps to keep an eye on things. But there are so many things that can go wrong with them (maybe you have an off day, or you don't know how to do them properly, or there are minor changes in the machinery, or the tech doesn't quite know what they're doing, or maybe the tech does know, but does it in a different way than the last tech did it). There are so many possibilities there.

Really what you're going to want to learn to keep track of is Hayley herself. What she can do, what she can't do. What she can't do anymore that she could do last month. Stuff like that can be a pretty good warning sign for problems.

 

[anonymous]

Emily,

Do you use the pulmozyme at night? Do you use it in the morning also or just at night? I've always used it in the morning but maybe night would be better.

John

 

[Emily65Roses]

I'm not a morning person, it's always been night for me. Usually within an hour or two of "bedtime." <img src="i/expressions/moon.gif" border="0">

 

[rcq925]

Thanks Emily!!! I appreciate your input!

 

[Faust]

I think in general, you will find that pulmozyme is almost universally taken amongst CF's, and will probably prove to be the way to go. I have been on it for a real long time. I personally blame it for the sebaceous cysts I get here and there, but it's a small price to pay for what it does. As someone else stated on here, it's not like you will feel awesome just because you are taking pulmozyme, but you will indeed feel the difference when you get off it. It highlights in bold NEVER to skip a day, and of course that is inevitable sometimes, i've missed taking it only a handful of times, and back then when I missed a day or two of it, I would normally bleed. So I feel it does help a good deal. Too bad it is so rediculously expensive.

 

[anonymous]

I have been on Pulmozyme for a really long time, years and years. I thought it was not doing anything BUT a couple years back I went on vacation and for the first time I forgot to grab the Pulmozyme out of the fridge before leaving for the airport. Therefore, I did not have it for the whole week. Boy, did I notice a difference in how I felt. My cough increased tremendously!!!! I reccomend it although I am not sure about if for young children. I have never had any side effects or problems from it.


Jennifer 34 years old with CF

PS. Do you have a medication plan with your insurance? I pay a copay for a 3 month supply and I have never had a problem with my mail order RX plans covering it through out the years. Check yours out.

 

[HairGirl]

I took pulmozyme from the time it first came too! But when I had my major hemoptysis problems we stopped it and Tobi, I've tried to go back but everytime I try I have hemoptysis problems! So I do HS and that's good. When I was on Pulmo, like Emily I could tell if I missed a day it was good stuff. But I haven't done it in three years.

 

[JazzysMom]

My pulmozyme is currently on hold. She wants a few weeks of no hemoptysis before starting again. I personally cant wait. I dont feel the difference when I am using it, but when I stop my mucuous is like glue. I suppose thats how it use to be before I started the Pulmozyme. It is expensive, but there is also Mucomyst which was used before PUlmozyme. Not all doctors still use it now that Pulmozyme is out, but thats solmething to ask about. It has the same general benefits!