Has anyone had a BAD experience with pulmozyme?

[catalinaohara]

Back when I was 11, I am 23 now, I started Pulmozyme when it first came out. I had been healthy and didn't really need it, but tried it anyway. 2-3 months later I had a horrible infection of mycobacteria, MAI, that came to make me need a lobectomy and was the beginning of a terrible year. Although there was no "known" connection between the two, I was always scared off of Pulmozyme.

Dr.'s have brought it up from time to time and I always said no....but I dont want to say no to a possibly good option. Its been said that is most likely is just a bad coincidence because there is nothing about PZyme that should "cause" MAI, but I am still paranoid. I am in the middle of an exacerbation and they want me to try it...its here in my house but I am still scared to do it.

I think I am probably being stupid, and need to just try it. But I wanted to see if anyone on here has ever had a bad experience with it? Its been around for so long now there doesnt seem to be much discussion about it.....
thanks so much, and thoughts on it would be great.
i don't tolerate Tobi, and dont LOVE HS, so I'd like to have another inhaled med.

Caitlin
23 w. b cepacia

 

[catalinaohara]

Back when I was 11, I am 23 now, I started Pulmozyme when it first came out. I had been healthy and didn't really need it, but tried it anyway. 2-3 months later I had a horrible infection of mycobacteria, MAI, that came to make me need a lobectomy and was the beginning of a terrible year. Although there was no "known" connection between the two, I was always scared off of Pulmozyme.

Dr.'s have brought it up from time to time and I always said no....but I dont want to say no to a possibly good option. Its been said that is most likely is just a bad coincidence because there is nothing about PZyme that should "cause" MAI, but I am still paranoid. I am in the middle of an exacerbation and they want me to try it...its here in my house but I am still scared to do it.

I think I am probably being stupid, and need to just try it. But I wanted to see if anyone on here has ever had a bad experience with it? Its been around for so long now there doesnt seem to be much discussion about it.....
thanks so much, and thoughts on it would be great.
i don't tolerate Tobi, and dont LOVE HS, so I'd like to have another inhaled med.

Caitlin
23 w. b cepacia

 

[catalinaohara]

Back when I was 11, I am 23 now, I started Pulmozyme when it first came out. I had been healthy and didn't really need it, but tried it anyway. 2-3 months later I had a horrible infection of mycobacteria, MAI, that came to make me need a lobectomy and was the beginning of a terrible year. Although there was no "known" connection between the two, I was always scared off of Pulmozyme.

Dr.'s have brought it up from time to time and I always said no....but I dont want to say no to a possibly good option. Its been said that is most likely is just a bad coincidence because there is nothing about PZyme that should "cause" MAI, but I am still paranoid. I am in the middle of an exacerbation and they want me to try it...its here in my house but I am still scared to do it.

I think I am probably being stupid, and need to just try it. But I wanted to see if anyone on here has ever had a bad experience with it? Its been around for so long now there doesnt seem to be much discussion about it.....
thanks so much, and thoughts on it would be great.
i don't tolerate Tobi, and dont LOVE HS, so I'd like to have another inhaled med.

Caitlin
23 w. b cepacia

 

[tapia]

Hi Caitlin,

I started on Pulmozyme and Tobi 5 years ago and have had no problems with either. Maybe it was just a coincidense. I know everyone has different side effects with each med. But in my case it has only helped.

And by the way, i did not like Tobi either but i noticed the difference when i took it correctly and on schedule. I felt a lot better. HS has actually been the best for me because it helps me clear out my lungs a lot better. Before i did my treatments without HS and felt nothing but once i started on it i notice the change for the better. But i will add that they all work great when done together.

 

[tapia]

Hi Caitlin,

I started on Pulmozyme and Tobi 5 years ago and have had no problems with either. Maybe it was just a coincidense. I know everyone has different side effects with each med. But in my case it has only helped.

And by the way, i did not like Tobi either but i noticed the difference when i took it correctly and on schedule. I felt a lot better. HS has actually been the best for me because it helps me clear out my lungs a lot better. Before i did my treatments without HS and felt nothing but once i started on it i notice the change for the better. But i will add that they all work great when done together.

 

[tapia]

Hi Caitlin,

I started on Pulmozyme and Tobi 5 years ago and have had no problems with either. Maybe it was just a coincidense. I know everyone has different side effects with each med. But in my case it has only helped.

And by the way, i did not like Tobi either but i noticed the difference when i took it correctly and on schedule. I felt a lot better. HS has actually been the best for me because it helps me clear out my lungs a lot better. Before i did my treatments without HS and felt nothing but once i started on it i notice the change for the better. But i will add that they all work great when done together.

 

[dasjsmum]

Hi Caitlin

The thread on Mucolyxir might be of interest to you...check out this link:


<a target=_blank class=ftalternatingbarlinklarge href="http://members5.boardhost.com/CFGSHStories/msg/1177337029.html">http://members5.boardhost.com/...es/msg/1177337029.html</a>

 

[dasjsmum]

Hi Caitlin

The thread on Mucolyxir might be of interest to you...check out this link:


<a target=_blank class=ftalternatingbarlinklarge href="http://members5.boardhost.com/CFGSHStories/msg/1177337029.html">http://members5.boardhost.com/...es/msg/1177337029.html</a>

 

[dasjsmum]

Hi Caitlin

The thread on Mucolyxir might be of interest to you...check out this link:


<a target=_blank class=ftalternatingbarlinklarge href="http://members5.boardhost.com/CFGSHStories/msg/1177337029.html">http://members5.boardhost.com/...es/msg/1177337029.html</a>

 

[my65roses4me]

I have had a horrible time with Pulmo. SHortly after I started it I had my first hemoptysis episode. They told me there wasn't a direct correlation with it. So I continued it for sbout three to four years. My bleeding only got worse and leaded into me having a lobectomy. I stopped taking it and tobi because I believed they both had something to do with it. It took me years of arguing with my dr about why I didn't want to take it. Finally I said ok and started Pulmo again only to have a bad episode of bleeding again. Now they believe me and dont ask me to try it anymore. It might be wise to trust your instincts even though I dont know anything about MAI. I dont know what that is. But sometimes you have to listen to your gut!! Just my opinion!!

 

[my65roses4me]

I have had a horrible time with Pulmo. SHortly after I started it I had my first hemoptysis episode. They told me there wasn't a direct correlation with it. So I continued it for sbout three to four years. My bleeding only got worse and leaded into me having a lobectomy. I stopped taking it and tobi because I believed they both had something to do with it. It took me years of arguing with my dr about why I didn't want to take it. Finally I said ok and started Pulmo again only to have a bad episode of bleeding again. Now they believe me and dont ask me to try it anymore. It might be wise to trust your instincts even though I dont know anything about MAI. I dont know what that is. But sometimes you have to listen to your gut!! Just my opinion!!

 

[my65roses4me]

I have had a horrible time with Pulmo. SHortly after I started it I had my first hemoptysis episode. They told me there wasn't a direct correlation with it. So I continued it for sbout three to four years. My bleeding only got worse and leaded into me having a lobectomy. I stopped taking it and tobi because I believed they both had something to do with it. It took me years of arguing with my dr about why I didn't want to take it. Finally I said ok and started Pulmo again only to have a bad episode of bleeding again. Now they believe me and dont ask me to try it anymore. It might be wise to trust your instincts even though I dont know anything about MAI. I dont know what that is. But sometimes you have to listen to your gut!! Just my opinion!!

 

[Jem]

I have been treated for MAI long term on three seperate occasions with triple antibiotic drugs so I know what a pain in the a$$ this bug is. Hemoptysis sucks!<img src="i/expressions/face-icon-small-disgusted.gif" border="0"> I have been testing negative for two years now. YAY!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

For me there does not seem to be a correlation between pulmozyme/MAI/hemoptysis. I say that because I started taking pulmozyme once a day after I tested postive for MAI the first time 12 years ago and have taken it ever since. And after the removal of the rest of my left lung 8 years ago I have had only a teaspoon of blood or less just a handful of times. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I do agree that HS is super but I know that people with hemoptysis are afraid that it is too harsh for them and might cause bleeding. The first time I tried 3% I did have some bleeding. I was scared and stopped that treatment but since I heard so many good things about HS I started it up again the next day with no problem. I moved up to 7% a month after that and have been doing it for a year now. I have had two episodes of 1/2 teaspoon of bleeding this past year. I love the HS and have seen my lung function improve on it so I am happy that it seems to be fine for me.

I just started tobi last month...and so far so good.

I hope you find what works for you.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Jem]

I have been treated for MAI long term on three seperate occasions with triple antibiotic drugs so I know what a pain in the a$$ this bug is. Hemoptysis sucks!<img src="i/expressions/face-icon-small-disgusted.gif" border="0"> I have been testing negative for two years now. YAY!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

For me there does not seem to be a correlation between pulmozyme/MAI/hemoptysis. I say that because I started taking pulmozyme once a day after I tested postive for MAI the first time 12 years ago and have taken it ever since. And after the removal of the rest of my left lung 8 years ago I have had only a teaspoon of blood or less just a handful of times. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I do agree that HS is super but I know that people with hemoptysis are afraid that it is too harsh for them and might cause bleeding. The first time I tried 3% I did have some bleeding. I was scared and stopped that treatment but since I heard so many good things about HS I started it up again the next day with no problem. I moved up to 7% a month after that and have been doing it for a year now. I have had two episodes of 1/2 teaspoon of bleeding this past year. I love the HS and have seen my lung function improve on it so I am happy that it seems to be fine for me.

I just started tobi last month...and so far so good.

I hope you find what works for you.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Jem]

I have been treated for MAI long term on three seperate occasions with triple antibiotic drugs so I know what a pain in the a$$ this bug is. Hemoptysis sucks!<img src="i/expressions/face-icon-small-disgusted.gif" border="0"> I have been testing negative for two years now. YAY!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

For me there does not seem to be a correlation between pulmozyme/MAI/hemoptysis. I say that because I started taking pulmozyme once a day after I tested postive for MAI the first time 12 years ago and have taken it ever since. And after the removal of the rest of my left lung 8 years ago I have had only a teaspoon of blood or less just a handful of times. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I do agree that HS is super but I know that people with hemoptysis are afraid that it is too harsh for them and might cause bleeding. The first time I tried 3% I did have some bleeding. I was scared and stopped that treatment but since I heard so many good things about HS I started it up again the next day with no problem. I moved up to 7% a month after that and have been doing it for a year now. I have had two episodes of 1/2 teaspoon of bleeding this past year. I love the HS and have seen my lung function improve on it so I am happy that it seems to be fine for me.

I just started tobi last month...and so far so good.

I hope you find what works for you.<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Diane]

Hi Caitlin,
I've been on Pulmozyme probably since it came out. I dont notice anything bad with it, but i notice a difference without it. If i skip a day or two ( which i hardly do), i can feel a difference in terms of how easily things come up. Once i go back on it, i'm fine.

 

[Diane]

Hi Caitlin,
I've been on Pulmozyme probably since it came out. I dont notice anything bad with it, but i notice a difference without it. If i skip a day or two ( which i hardly do), i can feel a difference in terms of how easily things come up. Once i go back on it, i'm fine.

 

[Diane]

Hi Caitlin,
I've been on Pulmozyme probably since it came out. I dont notice anything bad with it, but i notice a difference without it. If i skip a day or two ( which i hardly do), i can feel a difference in terms of how easily things come up. Once i go back on it, i'm fine.

 

[Diane]

i forgot to mention that with as many problems as i have with hemoptysis ( i've had 3 embolizations already, due to it) Pulmozyme doesnt seem to be the root of it. When i was first hospitalized for a bad bleed they had me doing the Pulmozyme twice a day ( i normally do it once a day) to get any extra mucus out, and surprisingly no bleeding with it ( Thank GOD).

 

[Diane]

i forgot to mention that with as many problems as i have with hemoptysis ( i've had 3 embolizations already, due to it) Pulmozyme doesnt seem to be the root of it. When i was first hospitalized for a bad bleed they had me doing the Pulmozyme twice a day ( i normally do it once a day) to get any extra mucus out, and surprisingly no bleeding with it ( Thank GOD).