Emily started Pulmozyme 13 days after it came on the market and has been on it ever since. She is 22 now and we can't remember exactly when it came out, but we think she's been on it since she was about 9. She is very faithful to it because she knows if she misses a day, she regrets it. It helps her alot to cough up the crap that loosens up when Mike gives her physical therapy. Sometimes when she is feeling really lousy, she will up it to twice a day.
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Pulmozyme question
- Thread starter rcq925
- Start date
I read up on Pulomozine and asked my doctor about it. Its the greatest thing in the world at loosing mucus in the test tube. A Wonder drug at that. But in the CF patients, results haven't been as promising. My daughter was put on it at 5 months and she is now 2 1/2. So I can't tell you what life is without it. Talking to my doctor, the reason to be on it is "why not?" It does show good results in the test tube, and what else are you going to do? I don't really know of any side effects. When we first go on it, 5 months, we gave it to her twice a day because the hosipital screwed up on the exit ordes. So even at double dose, we didn't see any problems.
My daughter was on Pulmozyme for about 1 year (age 4), but it was a hassle, and we since we didn't notice any difference at that time, so we quit.
Then, 1 1/2 years ago (age 9), she began coughing up gelatinous threads (plugs) of mucus during exacerbations. We started Pulmozyme, and haven't seen them since.
There hasn't been a big improvement in her PFTs, since they have always been great. But, she hasn't had as many lung infections while on the Pulmozyme.
Kay Walker
Mom of Kyra (10 wcf)
Then, 1 1/2 years ago (age 9), she began coughing up gelatinous threads (plugs) of mucus during exacerbations. We started Pulmozyme, and haven't seen them since.
There hasn't been a big improvement in her PFTs, since they have always been great. But, she hasn't had as many lung infections while on the Pulmozyme.
Kay Walker
Mom of Kyra (10 wcf)
Our doctor too said "why not" when a local pulmonologist put DS on it. DS is 2 1/2 and has never ever brought up mucus. He's been on it for 6 months and to me I don't see a difference. Don't think it's doing a thing for him. Maybe in the future when he has a problem with congestion, mucus plugs, etc. It shouldn't be a money issue, but $1500 a month for something that isn't doing anything is kinda silly.
you're right, $1500 bucks is a lot for something you aren't sure its really working. The problem with CF, as far as I understand, is that when things get in the lungs and flair up it degrades the lung functions. That degrading is irrevisable. So you do everything you can to keep the lungs healthy, not wait for a problem and then start treatment. So you have to really ask your self, "is this really not doing anything????"