Pulmozyme

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reillybug

New member
Reilly was just put on Pulmozyme and Singular yesterday. She has had a cold for a while (really since September, on and off) and she just can?t seem to shake the cough. The Doc also put her on an antibiotic to try to help. (She hasn?t been on Tobi yet, but I have a feeling that will be coming up soon) I was a little overwhelmed yesterday at the hospital, so I didn?t ask many questions about the new meds. <img src="i/expressions/face-icon-small-confused.gif" border="0"> What seems to be the main side effects, and is it better done in the morning or before bed? I have read that the Tobi causes hoarsness of the voice, and people usually say it tastes bad. Has anyone had the same reaction with the Pulmozyme?

As fas as the Singulair, does anyone have any adverse reactions to it? Thanks for everyone?s help.
<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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4kidsmom

New member
Reilly was just put on Pulmozyme and Singular yesterday. She has had a cold for a while (really since September, on and off) and she just can?t seem to shake the cough. The Doc also put her on an antibiotic to try to help. (She hasn?t been on Tobi yet, but I have a feeling that will be coming up soon) I was a little overwhelmed yesterday at the hospital, so I didn?t ask many questions about the new meds. What seems to be the main side effects, and is it better done in the morning or before bed? I have read that the Tobi causes hoarsness of the voice, and people usually say it tastes bad. Has anyone had the same reaction with the Pulmozyme?

As fas as the Singulair, does anyone have any adverse reactions to it? Thanks for everyone?s help.


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Cindy - Mom of 2 yo Daughter w/ CF

Hi Cindy,

Brady has been on the Pulmozyme for over 2 years now. We always do it in the morning (around 7 a.m. ) after his first breathing treatment with his vest. (He gets 4 breathing treatments a day with albuterol and broncho saline. In two of them he also gets the Pulmicort and only gets the Pulmozyme once a day now, he just got done with a 3 week clean-out and was doing the pulmozyme twice a day-- I am glad he is back to once a day on the Pulmo.) He has never had any side affects from it as far as I am aware. Brady also has never complained about being on the Tobi. Hopefully it stays that way.

I don't know anything about the singulair. Is it a nasal spray?? Brady does the Flonase.

Good Luck,

Angie
Step mom to Brittany 13 no cf
Mom to Tyler 12 no cf, cf carrier
Mom to Brady 4 with cf
Mom to Taylor 3 no cf, but chromosome 9q deletion 9q 21.2 q 22.1
 
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anonymous

New member
Hi Cindy,

My daughter is on Singulair since she was 2 she is almost 3. She has not had side effects from it that I am aware of. We give it to her at night and she chews it(it's a chewable). She started Pulmozyme this past summer. She does her Pulmozyme once a day in the am after her albuterol/pulmicort neb. She also does the vest 3 times a day. I have not noticed any side effects either from Pulmozyme. I find whenever Maggie starts a new drug I get nervous, so I understand how you feel. We do the pulmozyme before Maggie's vest.

Rebecca (mom to sammy 7 no CF and Maggie almost 3 with CF)
 
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anonymous

New member
We started Pulmozyme a few months ago. Hadn't noticed any adverse effects. We do albuterol w/atrovent solution while doing BD's (chest physiotherapy) three times a day, then follow that with pulmozyme once a day and follow that with Tobi twice a day. Haven't noticed any adverse affections. Think with me it just gets overwhelming at times. I think I've got a handle on things, am organized and then the docs throw another drug at us -- just seems like one more thing to deal with.
 
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4kidsmom

New member
Rebecca,

I have a question for you, we were told to do the pulmozyme after the vest because you want that medication to stay in the lungs as long as possible. (so they don't cough it up) So we do the albuterol treatment and then the vest and then the pulmozyme.( in the am) This is what we were told at the doctors office, have you ever heard of this? I wonder if I should post a new question about that.

Thanks

Angie
 
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anonymous

New member
We were told to use bronchiodialators (albuterol) with or before CPT. Then the pulmozyme and last the tobi. And I THINK that's what the product literature indicates also.

First you open things up, then you thin things with the pulmo and last you give the antibiotic
 
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anonymous

New member
Angie,

I was just told by our new CF doc, who also stated he was involved with clinical trial with pulmozyme and helped write the protocol for administering it to: do the pulmozyme , wait one hour then do airway clearance( the vest or chest pt what ever you do). He also stated that this does not always fit into peoples lifestyles so most people do the pulmozyme then airway clearance right after. He stressed it is very important to do that airway clearance after. We do the bronchodilators(albuterol) before the pulmozyme to open up the airways so that the medicine(pulmozyme) can get in- it can sound very confusing can't it. The CFF has a pamphlet about the order of the nebs and of course I can't find it. But I'm sure it would be on their website.

Rebecca(mom to sammy no CF and Maggie almost 3 with CF)
 
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4kidsmom

New member
Rebecca,

I will research this more and email our cf doctor tonight. Your right things are very confusing and things seem to change alot.

Thanks

Angie
 
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Caleblove0802

New member
My son was put on pulmozyme in October. We do pulmozyme in the afternoon...however I do not always follow the CPT right after. He gets CPT in the morning then pulmozyme in the afternoon and CPT in the evening. I guess I have not asked enough questions to my CF Dr. Should we be doing pulmozyme in the morning? Will it make my son feel better throughout the day if it is done that way? Also...my son had a 3 week stay in the hospital in October with pseudomonas. When RT would come in they would do pulmozyme and then CPT would immediatley following.

Melissa
1 son 4 mos w/CF
 
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anonymous

New member
This is what the CFF is NOW saying it the best order for therapies (you can see this on their website and watch it on the Total Lung Care webcast for much more information).

1. Bronchodialators-open airways
2. Pulmozyme - thins mucus
3. ACT - Airway Clearance to get mucus out of lungs
4. Antibiotics-treat infection

FYI - On this webcast, the topic of doing therapies with ACT is discussed.
 
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reillybug

New member
Thanks for everyone's input. The pharmacy will be getting the Pulmozyme in today, so hopefully it will go well. The Singulair is a chewable tablet, but of course she refused to shew it last night. I had to crush it and mix it with her applesauce. I will keep trying to get her to chew it herself, it just takes her a while to adjust to any new meds.
Again, thanks for everyone's input. I'll also check out the webcast.
 
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anonymous

New member
I am a pediatric nurse on the cystic fibrosis floor and my boyfriend also has cystic fibrosis. Pulmozyme thins secretions and is best done before chest physical therapy or the vest. It makes it easier to cough up the mucous. Pulmozyme is one of the better tasting nebs. Good luck and you should always ask as many questions to the docs as possible. It is the best way to learn!
 
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