Pulmozyme

[anonymous]

My son is 22 months. He was daignosed at 2 days old because of meconium ileus. His CF doc put him on Pulmozyme right from the start. Being new to CF I thought that everybody was put on this drug. It seems from reading some of your posts that this is not the case and I'm looking for some more info about it. It seems that there is a bit of a debate whether Pulmozyme helps everyone. If it will help him than I don't have a problem with him being on it but how do they really know? He doesn't have a cough and has never cultured anything. We do CPT twice a day.

Nicole

 

[ashton2005]

Ashton is 5 mo old and was started on pulmuzyme from day one. our doctor at Riley told us that some infants it helps and some it dosent they are willing to try though. it also helps them in their research on it.. i do notice a slight difference in ashtons breathing after his puluzyme treatment though..

christi

 

[anonymous]

DS has been on pulmozyme since last Fall. When we first started going to the local CF clinic they mentioned a study they were participating in regarding pulmozyme, but didn't recommend putting DS on it -- he was 3 months old at the time.

I really can't tell a difference with DS being on it. I'm still getting used to the idea even though it's been over 6 months. Takes me awhile to adjust to a new treatment and I don't particularly like the pulmonologist who put DS on this medication, so I'm just kinda negative about the whole thing. Seems as if it's one of those things that he just puts all his patients on because.

When I asked his CF doctor in the City about it, he just said -- it wouldn't hurt ds to be on it, but it's not something he regularly prescribes. So I'm planning to ask that doctor about hypertonic saline and again about the pulmozyme.

Liza

 

[anonymous]

Since he has been on it from the start I don't know whether it make a difference for him or not. The impression that I got from his first pulmonologist was, CF= automatic pulmozyme. He goes to clinic this month so I will ask his new Dr what his thoughts are.

Nicole

 

[anonymous]

I've noticed the same variation in usage that you mentioned. My kids (one-year old) aren't on it. The doc said that the research shows that it is helpful once you have lung damage, but not necessarily helpful in preventing it.

Someone posted some research awhile ago on here from U or MN that indicates the same thing.

Hard to know what to do...

Stacy

 

[debs2girls]

My daughter has lung damage but her cf dr said he didnt want to put
her on pulmozyme yet, but at some point he will. She is always
coughing and gunky sounding, so why not put her on it?

 

[damiensmom]

Damiens been on it from day one. I read up on it to and I remember it saying it provided best results on infants and some did better than others I belive it was realated to fev 1 .If there was improvment with pulmazyme .

 

[rcq925]

This is a question have been struggling with for a long time. I have even posted here and the adult board about it, so if you search for Pulmozyme, you may find my previous post and some more answers.

My daughter, Hayley, is 2 years old and is NOT on pulmozyme. I know a lot of kids and infants are, but most of them just because their doctor or clinic puts everyone on it. I cannot find any studies or proof that they can actually show that it does help, have better PTF's or FEV1.

I have asked our doctor about it (I LOVE our doctor and trust him implicitly!) He said there is no proof that it helps and that Hayley is not sick enough to need it (She has been hospitalized 3 times, on IV antibiotics twice, had Nissen Fundoplication) He however, is interested in Hypertonic Saline, and may prescribe it soon.

My thinking at this point is that we are not going to do Pulmozyme at his point because:

1) There is no definitive proof that it helps.
2) I don't want to add ANOTHER treatment if we don't need it.
3) It is so expensive! About $1,500 per month!
4) Some people have had lung bleeds while using it.

If anyone has access to any studies on pulmozyme I would love to read them!

 

[NoExcuses]

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[NoExcuses]

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[rcq925]

Pulmozyme has been evaluated in a randomized, placebo-controlled trial of clinically stable cystic fibrosis patients, 5 years of age and older

This is exactly my point! It has been tested in children 5 and over, but is just now being studied in children under 5 (my daughter is only 2!) and it has not been PROVEN in that age group to be effective, expecially since children this age usually cannot cough up the mucous like older children or adults. I am not trying to say that Pulmozyme doesn't work for a lot of people or that it is a bad drug, in fact I am sure at some point that Hayley will be on it. What I am saying is that I don't have enough facts about the drug in kids under 5 to add it now and neither does my doctor, who by the way is a wonderful doctor and I would not consider changing doctor at this point over the Pulmozyme, because I agree with him.

Thanks for your point of view, I appreciate everyone on these boards. Free flow of information is how we all learn!

 

[anonymous]

My son is 9. He was diagnoes at 6mos. He has slways just been on albuterol/saline neb treatments. He was on Tobi once. He doesn't, at this point have much lung problems. No hospitilizations since his diagnosis. So our doctor has never prescribed anything else for him yet.

Mother of 9 yr old boy wcf

 

[thelizardqueen]

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



Many things with CF are being prophilaxis. Don't treat somethig once it arises - prevent it from happening.</end quote></div>

I agree with Amy. I've never been on Pulmozyme myself. I haven't even been in hospital for infections since I was 14. My doc wants to put me on pulmozyme because he wants to prevent my lungs from getting more damaged. He thinks that by thinning my mucus, I'll be able to cough more up then I already due, and have less chest infections. I think pulmozyme is great as a preventative, not something you should use should something buggy arise.

Now if only I could get my doc to put me on the hypertonic saline.

 

[anonymous]

My son, 2 1/2, is on Pulmozyme and I'm very happy with results we've seen since starting it. He had RSV at 3 1/2 months and had chronic wheezing for months after. Long story short...after being on Pulmozyme for a full year, his doctor looked at (and showed me) his first year x-rays and this years and his lungs had actually IMPROVED, his lung functions are normal and has never cultured anything (*knocking on wood, thank God*) I HAVE heard it doesn't work for everyone, but, in his case, I really, really think it has helped. I could actually tell his mucus was thinner.

HTH!

Amanda
Mommy to Kenzie (5, cf carrier) and Ethan (2, wcf)<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

My kids are NOT on Pulmozyme. My oldest 2 tried it....one experienced relatively severe hemopytsis and the other saw no change in symptoms, tests etc.

I have seen research stating it really only helps 1/3 of CF patients and can harm another percent of CF patients and that a lot of CF clinics are prescribing it to everyone just because. At the MN clinic they use MucoMyst instead and have one of the highest average life expectancies.

I personally wil never put of my kids on it just from what I saw it do to my girls, the studies I have read and the doctors I have talked to.

Not to mention it costs $1500 a month and we had to pay half of that!

My kids have been to 3 CF clinics and one of them prescribed just because, the other 2 said they didn't really use it.

We have had great results so far with Hypertonic Saline as well as MucoMyst and now Glutathione

 

[anonymous]

Hi-

My daughter takes Pulmozyme twice a day. She started it once a day at four months of age. After repeated lung infections, her doctor prescribed it twice a day. It definitely has made her lungs function better.

Becky - I understand your feelings about "studies done in children over five". Unfortunately, almost ALL the meds our kids are on have only been studied in children over five. In fact, many of them are only approved in children over five or six. I remember when Samantha was an infant and she would start a new med, I would read the info and ask the docs, "But this says it is only federally approved for use in children over the age of six," and their reply would be, "Well, they don't do a lot of studies of meds on infants." Especially, meds specific to CF.
Unfortunate, but a reality just the same.

Maria (mom to Sami, three years old w/cf)

 

[NoExcuses]

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[Ratatosk]

If cost is an issue -- the company that makes pulmozyme -- genetech? has a program similar to the Tobi foundation. If you can't afford the drug, don't have adequate insurance or your copay is excessive, you can fill out forms to get those costs reduced. You probably have to go thru the CF Pharmacy -- we're signed up for Tobi, but havent' signed up for pulmozyme yet.

Liza mom of 2 1/2 year old

 

[anonymous]

For us, cost is not an issue. Tricare pays for 100%.

Nicole

 

[anonymous]

My daughter is starting on this at the end of the month and she is nearly one. I say if you can get it..do it. My doctor in the UK is well known and the centre is the one of the best in the UK..........and they give it to all children who can put their mouths around a mouth piece.. They get great results...Its a preventative ...my physio says it keeps them well. In the UK a lot of Docs wont prescribe it on our NHS as its very expensive and cost £20 per dose.. twice a day!!!!! Ours does though and we are fortunate for that..some wait until the child has lung damage but ours dont want to get to that point