lightNlife
New member
Some people are simply unable to tolerate pulmozyme. If you're not taking it consistently, then it's possible that the reaction you're having is worse than it should be.
Years ago when Pulmozyme first was on the market, I was one of the first people to get to try it. It worked great for me for about 3 weeks, then I started having that icky feeling in my chest, probably the same irritation you're describing. Within a couple weeks of that feeling, I began having a very dry, painful cough, and slight hemoptysis. I wasn't coughing up much mucus though.
It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago.
These days I have much more lung involvement. I have gone from "mild" to "moderate" lung disease and nothing was working well for me. I asked my doc if I could try the pulmozyme again. Amazingly, it works great for me now. My mucus is thinner, it's easier to cough up, and I don't have hemoptysis with it.
I don't know if that's because I do hypertonic saline in addition to pulmozyme, but I'm just glad to have a solution that works. Mucomyst never did work for me very well either. In fact, that made me feel "stickier" somehow. But then of course, everyone has their own peculiar set of weird issues with CF.
Years ago when Pulmozyme first was on the market, I was one of the first people to get to try it. It worked great for me for about 3 weeks, then I started having that icky feeling in my chest, probably the same irritation you're describing. Within a couple weeks of that feeling, I began having a very dry, painful cough, and slight hemoptysis. I wasn't coughing up much mucus though.
It was explained to me that since I didn't have much lung involvement at that point in my progression of the disease, that the mucolytic (mucus cutting) property of the drug wasn't finding enough mucus to act upon, so it was damaging the lining of my lungs as if THEY were mucus. That explained the blood. We stopped the pulmozyme at that time. That was about 8 years ago.
These days I have much more lung involvement. I have gone from "mild" to "moderate" lung disease and nothing was working well for me. I asked my doc if I could try the pulmozyme again. Amazingly, it works great for me now. My mucus is thinner, it's easier to cough up, and I don't have hemoptysis with it.
I don't know if that's because I do hypertonic saline in addition to pulmozyme, but I'm just glad to have a solution that works. Mucomyst never did work for me very well either. In fact, that made me feel "stickier" somehow. But then of course, everyone has their own peculiar set of weird issues with CF.