Pulmozyme question

R

rcq925

New member
Hello everyone. I don't post a lot, but do lurk daily. I am mom to Hayley, 23 months with CF. Hayley was diagnosed at 3 months old after severe reflux. She aspriated into her lungs and ended up with a Nissen Fundoplication surgery. When her respiratory problems persisted they did the sweat test and she was diagnosed with CF. She has done pretty well since then. Maybe 5 infections causing the use of oral antibiotics (usually Augmentin and Ceftin). She was hospitalized in October for a week and on IV antibiotics for two weeks due to a bad infection, but so far she has only cultured pretty normal CF bugs, Staph, Strep and Homophelius influenza. No pseudomonas or any of the worse bugs.

I am torn as to the idea of starting pulmozyme. Right now she does 3 treatments per day with Xopenex, 2 treatments with Pulmicort. She does her vest 3 times per day for 25 minutes each time, takes Vitamax and Creon 5. She only weighs about 25 pounds, so we would like her to gain more weight, but other than that she is doing very well.

So to my question. I want to know your experience with Pulmozyme. How old are you/your child? How long have you been on it? DO you think it really helps? Any bad side effects? For those of you with young children who have started it recently, what reasoning did your doctor give you for starting Pulmozyme?

I want the good, bad and the ugly, so please respond with any information that you want to share. Thanks in advance.

Becky, Mom to Nathan, 5, carrier and Hayley, 23 months w/CF
 
R

rcq925

New member
Hello everyone. I don't post a lot, but do lurk daily. I am mom to Hayley, 23 months with CF. Hayley was diagnosed at 3 months old after severe reflux. She aspriated into her lungs and ended up with a Nissen Fundoplication surgery. When her respiratory problems persisted they did the sweat test and she was diagnosed with CF. She has done pretty well since then. Maybe 5 infections causing the use of oral antibiotics (usually Augmentin and Ceftin). She was hospitalized in October for a week and on IV antibiotics for two weeks due to a bad infection, but so far she has only cultured pretty normal CF bugs, Staph, Strep and Homophelius influenza. No pseudomonas or any of the worse bugs.

I am torn as to the idea of starting pulmozyme. Right now she does 3 treatments per day with Xopenex, 2 treatments with Pulmicort. She does her vest 3 times per day for 25 minutes each time, takes Vitamax and Creon 5. She only weighs about 25 pounds, so we would like her to gain more weight, but other than that she is doing very well.

So to my question. I want to know your experience with Pulmozyme. How old are you/your child? How long have you been on it? DO you think it really helps? Any bad side effects? For those of you with young children who have started it recently, what reasoning did your doctor give you for starting Pulmozyme?

I want the good, bad and the ugly, so please respond with any information that you want to share. Thanks in advance.

Becky, Mom to Nathan, 5, carrier and Hayley, 23 months w/CF
 
A

anonymous

New member
Hi Becky!
Sophia started on pulmozyme at her first birthday. She is now four. She needed to be on antibiotics for a cold a few times her first year and had pneumonia when she was four months old. Since her first birthday and the start of pulmozyme she has only been on antibiotics once. So that is three years of almost no pulmonary problems. I don't know if it is a coincidence but she has done great on it. I have not noticed any side effects. She and her brother only take it once a day. It takes about 9 minutes in the nebulizer. The doctor did not request for her to be on it. I asked for her to be on it. Jack, now two, started on pulmozyme when he was a month old. Jack has needed oral antibiotics about once a year.

I know that it seems like you are probably doing a lot of treatments already. I took Sophia and Jack to see Dr. Warwick in Minneapolis last year. He said they don't need albuterol (Xopenex) daily unless they are congested. A few weeks later Sophia and Jack's cf doctor told me the same thing. I had always assumed they needed it for vest treatments. Dr. Warwick (who you probably know invented the vest) told me that is not the case. Anyway, I just thought I would pass that info on to you.

Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
A

anonymous

New member
Hi Becky!
Sophia started on pulmozyme at her first birthday. She is now four. She needed to be on antibiotics for a cold a few times her first year and had pneumonia when she was four months old. Since her first birthday and the start of pulmozyme she has only been on antibiotics once. So that is three years of almost no pulmonary problems. I don't know if it is a coincidence but she has done great on it. I have not noticed any side effects. She and her brother only take it once a day. It takes about 9 minutes in the nebulizer. The doctor did not request for her to be on it. I asked for her to be on it. Jack, now two, started on pulmozyme when he was a month old. Jack has needed oral antibiotics about once a year.

I know that it seems like you are probably doing a lot of treatments already. I took Sophia and Jack to see Dr. Warwick in Minneapolis last year. He said they don't need albuterol (Xopenex) daily unless they are congested. A few weeks later Sophia and Jack's cf doctor told me the same thing. I had always assumed they needed it for vest treatments. Dr. Warwick (who you probably know invented the vest) told me that is not the case. Anyway, I just thought I would pass that info on to you.

Sharon, mom of Sophia, 4 and Jack, 2 both with cf
 
C

CFHockeyMom

New member
When Sean was first diagnosed at 12 weeks Pulmozyme hadn't yet been approved for children under 6. At two Sean was part of a study which involved the benefits of Pulmozyme on the under 6 set. These benefits were monitored via High res CT since most kids under 6 aren't yet experts at PFT's.

As is typical with studies there was a group of kids that got Pulmozyme and a group of kids that didn't (double blind study with placebo). The study was 6 months long and after about two months we knew Sean was in the group that was getting the Pulmozyme and not the placebo. His health improved dramatically. Upon completion of the study we had our Dr. find out which group Sean was in and sure enough he was on Pulmozyme. We immeadiately asked for a Rx.

Sean has been on Pulmozyme since with the exception of a few months where we had major insurance problems. During those few months his cough (which he rarely ever has) was back with a vengence.

The only side effect that we notice initially was Sean's voice was a little horse but that didn't last.

I understand your hesitancy toward adding another treatment but Pulmozyme doesn't take long to nebulize and well worth it.

I recommend it highly!!!
 
C

CFHockeyMom

New member
When Sean was first diagnosed at 12 weeks Pulmozyme hadn't yet been approved for children under 6. At two Sean was part of a study which involved the benefits of Pulmozyme on the under 6 set. These benefits were monitored via High res CT since most kids under 6 aren't yet experts at PFT's.

As is typical with studies there was a group of kids that got Pulmozyme and a group of kids that didn't (double blind study with placebo). The study was 6 months long and after about two months we knew Sean was in the group that was getting the Pulmozyme and not the placebo. His health improved dramatically. Upon completion of the study we had our Dr. find out which group Sean was in and sure enough he was on Pulmozyme. We immeadiately asked for a Rx.

Sean has been on Pulmozyme since with the exception of a few months where we had major insurance problems. During those few months his cough (which he rarely ever has) was back with a vengence.

The only side effect that we notice initially was Sean's voice was a little horse but that didn't last.

I understand your hesitancy toward adding another treatment but Pulmozyme doesn't take long to nebulize and well worth it.

I recommend it highly!!!
 
J

JazzysMom

New member
Yes FoxyCoxy, PUlmozyme is made by Dnase. I recommend Pulmozyme. It had been prescribed for me as soon as it came out, but I didnt "think" I needed it. Now if I dont use it I can feel a difference even when I am not "sick". Unlike antibiotics you dont have to worry about bacterias becoming resistant to them & all its really meant to do is keep that junk think enough to keep moving. I realize its a personal choice & that its for a little one so the last thing you want is another med to do at treatment time, but I do recommend it!
 
J

JazzysMom

New member
Yes FoxyCoxy, PUlmozyme is made by Dnase. I recommend Pulmozyme. It had been prescribed for me as soon as it came out, but I didnt "think" I needed it. Now if I dont use it I can feel a difference even when I am not "sick". Unlike antibiotics you dont have to worry about bacterias becoming resistant to them & all its really meant to do is keep that junk think enough to keep moving. I realize its a personal choice & that its for a little one so the last thing you want is another med to do at treatment time, but I do recommend it!
 
A

anonymous

New member
DS is 3 and has been on pulmozyme for the past 6 months. His local doctor added it to his drugs. I really don't think he needs it, just think the local doctor thinks it's the drug de jour and that all CFers under his care should be on it.

When we asked his CF doctor hoping he'd take ds off of it, he said it probably doesn't hurt but that most of his patients are doing so well, he can't tell if it's keeping them healthy or not. DS is on albuterol and atrovent, pulmozyme and tobi. He cultured pseudo (non-mucoid) and HIB. Since our last CF clinic appointment his doctor added zithromax, which he said helps get rid of the HIb and prevent pertussis. He's also on maintenance antibiotics all the time -- cephlaxin. I'm hoping that we can get off the pulmozyme and on hypertonic saline instead. I just feel it's one of those drugs to use later on in life when there's a problem with congestion. Quite frankly I just don't see any improvement and it's just one more thing to do that's also very very expensive -- $1500 a month. I normally don't have problems with cost, but I don't think it does anything for DS.
 
A

anonymous

New member
DS is 3 and has been on pulmozyme for the past 6 months. His local doctor added it to his drugs. I really don't think he needs it, just think the local doctor thinks it's the drug de jour and that all CFers under his care should be on it.

When we asked his CF doctor hoping he'd take ds off of it, he said it probably doesn't hurt but that most of his patients are doing so well, he can't tell if it's keeping them healthy or not. DS is on albuterol and atrovent, pulmozyme and tobi. He cultured pseudo (non-mucoid) and HIB. Since our last CF clinic appointment his doctor added zithromax, which he said helps get rid of the HIb and prevent pertussis. He's also on maintenance antibiotics all the time -- cephlaxin. I'm hoping that we can get off the pulmozyme and on hypertonic saline instead. I just feel it's one of those drugs to use later on in life when there's a problem with congestion. Quite frankly I just don't see any improvement and it's just one more thing to do that's also very very expensive -- $1500 a month. I normally don't have problems with cost, but I don't think it does anything for DS.
 
F

Foxycoxy

New member
thanx, yeh i just always call it Dnase.

i bin on it bout 5 yrs, n i recommend it, ive never had any side effects and find it really good at helping to clear my chest.
i had to have trials to prove that it would be beneficial for me to have it, but still it took a while before my local doctor was allowed to prescribe it for me, due to how much it costs.

becky, im 19 and its really helped me. n i promise u i have never had any side effects.
 
F

Foxycoxy

New member
thanx, yeh i just always call it Dnase.

i bin on it bout 5 yrs, n i recommend it, ive never had any side effects and find it really good at helping to clear my chest.
i had to have trials to prove that it would be beneficial for me to have it, but still it took a while before my local doctor was allowed to prescribe it for me, due to how much it costs.

becky, im 19 and its really helped me. n i promise u i have never had any side effects.
 
D

damiensmom

New member
Damien has been on it since he was 6 weeks old and is now 5 months. I dont notice side affects. I love it . I do ours at night and he sleeps well. He does not get hyper or restless. And I had my son switched to Xopenax from Albuteral because of less side affects. I understand your concern especially when they do alot treatment. Damien gets Xopenax every 6 hours round the clock.
 
D

damiensmom

New member
Damien has been on it since he was 6 weeks old and is now 5 months. I dont notice side affects. I love it . I do ours at night and he sleeps well. He does not get hyper or restless. And I had my son switched to Xopenax from Albuteral because of less side affects. I understand your concern especially when they do alot treatment. Damien gets Xopenax every 6 hours round the clock.
 
A

anonymous

New member
My daughter been on it since she was 2 days old and now she is 12 months we got no problems with it.she has 2 breathing treatments in the morning aND one at night and 1 month on 1 month off for tobi.

patty
4 girls
14
12
7
1 w/cf
my e-mail is pgrainger@prodigy.net
 
A

anonymous

New member
My daughter been on it since she was 2 days old and now she is 12 months we got no problems with it.she has 2 breathing treatments in the morning aND one at night and 1 month on 1 month off for tobi.

patty
4 girls
14
12
7
1 w/cf
my e-mail is pgrainger@prodigy.net
 
A

anonymous

New member
We give DS CPT three times a day with albuterol and atrovent. When he's not on Tobi, we give him his pulmozyme after school during his middle treatment, otherwise when on Tobi he gets it at the treatment before he goes to bed. Otherwise with Tobi, it cuts in too much to homework, family, dinner time.

We do CPT with his bronchiodialators, then Tobi in the morning while he's still sleeping. Then after work/school we do CPT again with either Tobi or Pulmoyzyme -- tobi takes 25-35 minutes depending upon which compressor we're using -- pulmoaid is shorter, cpt takes about 15-20 minutes, pulmozyme takes about 5 minutes. It does get a little overwhelming with all the time it takes. I too just don't notice a difference with the pulmozyme. DS has more sinus problems and I guess I was hoping, thinking this would be the wonder drug to cut thru all that stuff. But nothing, nada.
 
A

anonymous

New member
We give DS CPT three times a day with albuterol and atrovent. When he's not on Tobi, we give him his pulmozyme after school during his middle treatment, otherwise when on Tobi he gets it at the treatment before he goes to bed. Otherwise with Tobi, it cuts in too much to homework, family, dinner time.

We do CPT with his bronchiodialators, then Tobi in the morning while he's still sleeping. Then after work/school we do CPT again with either Tobi or Pulmoyzyme -- tobi takes 25-35 minutes depending upon which compressor we're using -- pulmoaid is shorter, cpt takes about 15-20 minutes, pulmozyme takes about 5 minutes. It does get a little overwhelming with all the time it takes. I too just don't notice a difference with the pulmozyme. DS has more sinus problems and I guess I was hoping, thinking this would be the wonder drug to cut thru all that stuff. But nothing, nada.
 
You must log in or register to reply here.
Top