Hypertonic Saline/Mucomyst/Pulmozyme....

[MCGrad2006]

Yea I was really disappointed when I had to stop doing it. It was bothering my throat A LOT and I think that contributed to the cough, but b/c of my cold, I needed the extra abx boost. I am hoping I can start it up again when I feel better. I want my body to adjust to it.

 

[catalinaohara]

Renee,

First of all I think that it is completely right of you to be questioning this. Since the research came out in NEJM about HS, and since i became marketable last year, they've basically pushed it on everyone. Here's the thing, EVERYONE with CF is different. Thats the tough thing about this disease as I am sure you've seen, and everyone here will agree.

I have cepacia, and for me, inhaled Cephtaz changed my life a few months prior to HS becoming available. I have tried HS, and like it ok, but dont love it. I would love for it to work as well as the Cephtaz, because then I could be on a non-antibiotic, but it just doesn't. It moves stuff in my lungs, but its almost as if it makes it TOO thin, and i can't cough it out. As a result, I do develop a daily cough (which I dont normally have), as well as irritation. SOME people love it, and thats great. I think we all need to be wary though of things being PUSHED on us just because they are new. There is no doubt in my mind that half of it is that doctors want to see what the results are, so they give it to everyone.

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.

Regardless, all this rambling is to point out that you'll never have any sanity with this disease unless you trust your own gut instincts and question the doctors. When your daughters get older they will know just as much, and probably more, than their medical people. You end up having to stand your ground if you think something is right for you, because the truth is, there is still SO much they don't know.

When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!

Caitlin
23 w/ b. cepacia

 

[catalinaohara]

Renee,

First of all I think that it is completely right of you to be questioning this. Since the research came out in NEJM about HS, and since i became marketable last year, they've basically pushed it on everyone. Here's the thing, EVERYONE with CF is different. Thats the tough thing about this disease as I am sure you've seen, and everyone here will agree.

I have cepacia, and for me, inhaled Cephtaz changed my life a few months prior to HS becoming available. I have tried HS, and like it ok, but dont love it. I would love for it to work as well as the Cephtaz, because then I could be on a non-antibiotic, but it just doesn't. It moves stuff in my lungs, but its almost as if it makes it TOO thin, and i can't cough it out. As a result, I do develop a daily cough (which I dont normally have), as well as irritation. SOME people love it, and thats great. I think we all need to be wary though of things being PUSHED on us just because they are new. There is no doubt in my mind that half of it is that doctors want to see what the results are, so they give it to everyone.

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.

Regardless, all this rambling is to point out that you'll never have any sanity with this disease unless you trust your own gut instincts and question the doctors. When your daughters get older they will know just as much, and probably more, than their medical people. You end up having to stand your ground if you think something is right for you, because the truth is, there is still SO much they don't know.

When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!

Caitlin
23 w/ b. cepacia

 

[catalinaohara]

Renee,

First of all I think that it is completely right of you to be questioning this. Since the research came out in NEJM about HS, and since i became marketable last year, they've basically pushed it on everyone. Here's the thing, EVERYONE with CF is different. Thats the tough thing about this disease as I am sure you've seen, and everyone here will agree.

I have cepacia, and for me, inhaled Cephtaz changed my life a few months prior to HS becoming available. I have tried HS, and like it ok, but dont love it. I would love for it to work as well as the Cephtaz, because then I could be on a non-antibiotic, but it just doesn't. It moves stuff in my lungs, but its almost as if it makes it TOO thin, and i can't cough it out. As a result, I do develop a daily cough (which I dont normally have), as well as irritation. SOME people love it, and thats great. I think we all need to be wary though of things being PUSHED on us just because they are new. There is no doubt in my mind that half of it is that doctors want to see what the results are, so they give it to everyone.

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.

Regardless, all this rambling is to point out that you'll never have any sanity with this disease unless you trust your own gut instincts and question the doctors. When your daughters get older they will know just as much, and probably more, than their medical people. You end up having to stand your ground if you think something is right for you, because the truth is, there is still SO much they don't know.

When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!

Caitlin
23 w/ b. cepacia

 

[ReneeP]

Thanks so much for all the advice and info. It always makes me feel better just to know I am not alone.

I am very happy there are new drugs available for CF...it's wonderful...but it's confusing too. I want to give my girls the best possible and longest possible life so I always want to try the new stuff. But after a while it's just too much. We can't do albuterol, intal, mucumyst, pulmozyme, hypertonic saline, and on and on... where does it end?

In re-reading Dr Warwicks info (I have discussed this with Dr Warwick as well because I lived up there and we went to the MPLS clinic for 4 years) it almost makes me want to toss out the Pulmozyme and use the Mucomyst and Hypertonic Saline instead. I know they don't like Pulmozyme up there. I talked about that with Dr Milla as well and he had nothing good to say about it either. Yet, many people love it...

I guess there will always be new things coming out and we have to decide whether to toss out the old to make room for the new or add the new to an already overwhelming schedule of meds... All we can do is pray we are making all the right choices...

Thanks again for the input!

How's that Sakasuka? Better?

 

[ReneeP]

Thanks so much for all the advice and info. It always makes me feel better just to know I am not alone.

I am very happy there are new drugs available for CF...it's wonderful...but it's confusing too. I want to give my girls the best possible and longest possible life so I always want to try the new stuff. But after a while it's just too much. We can't do albuterol, intal, mucumyst, pulmozyme, hypertonic saline, and on and on... where does it end?

In re-reading Dr Warwicks info (I have discussed this with Dr Warwick as well because I lived up there and we went to the MPLS clinic for 4 years) it almost makes me want to toss out the Pulmozyme and use the Mucomyst and Hypertonic Saline instead. I know they don't like Pulmozyme up there. I talked about that with Dr Milla as well and he had nothing good to say about it either. Yet, many people love it...

I guess there will always be new things coming out and we have to decide whether to toss out the old to make room for the new or add the new to an already overwhelming schedule of meds... All we can do is pray we are making all the right choices...

Thanks again for the input!

How's that Sakasuka? Better?

 

[ReneeP]

Thanks so much for all the advice and info. It always makes me feel better just to know I am not alone.

I am very happy there are new drugs available for CF...it's wonderful...but it's confusing too. I want to give my girls the best possible and longest possible life so I always want to try the new stuff. But after a while it's just too much. We can't do albuterol, intal, mucumyst, pulmozyme, hypertonic saline, and on and on... where does it end?

In re-reading Dr Warwicks info (I have discussed this with Dr Warwick as well because I lived up there and we went to the MPLS clinic for 4 years) it almost makes me want to toss out the Pulmozyme and use the Mucomyst and Hypertonic Saline instead. I know they don't like Pulmozyme up there. I talked about that with Dr Milla as well and he had nothing good to say about it either. Yet, many people love it...

I guess there will always be new things coming out and we have to decide whether to toss out the old to make room for the new or add the new to an already overwhelming schedule of meds... All we can do is pray we are making all the right choices...

Thanks again for the input!

How's that Sakasuka? Better?

 

[okok]

Hi renee,

My daughter is on 3% HS and she definately coughs a lot during the treatments. Nebbing with albutural beforehand is susposed to help with that...

My understanding is that the coughing is good because it means they are clearing more mucus out...but i'm not sure. My daughter might have coughed more when she first started HS but now it is mostly during the treatments. I just remember being wary and worrying that the treatment was harming her but we stuck with it and have seen alot of improvements. I think from what our docs said it is important to do HS at least once a day. It is even better to do it 2 times a day. I think the frequency with which you do the treatments is even more important then the % but i am not sure. Please someone correct me if i am wrong. Since my daughter started HS she hasn't needed antibiotics as frequently as she used too which i think is great. It definately irritated her lungs at first but i guess she tolerates it ok now.

From my experience, if the HS is working properly, i don't think it would cause a chronic cough. If your daughter's chronic cough is caused by the HS it could be because she is not tolerating it well. I actually think (but this could be my imagination) that my daughter coughs less during the day then she used too...although she coughs much more during her treatments. It is sort of like she gets her coughing all in one go or something.

I agree talk to your doc about the coughing.

 

[okok]

Hi renee,

My daughter is on 3% HS and she definately coughs a lot during the treatments. Nebbing with albutural beforehand is susposed to help with that...

My understanding is that the coughing is good because it means they are clearing more mucus out...but i'm not sure. My daughter might have coughed more when she first started HS but now it is mostly during the treatments. I just remember being wary and worrying that the treatment was harming her but we stuck with it and have seen alot of improvements. I think from what our docs said it is important to do HS at least once a day. It is even better to do it 2 times a day. I think the frequency with which you do the treatments is even more important then the % but i am not sure. Please someone correct me if i am wrong. Since my daughter started HS she hasn't needed antibiotics as frequently as she used too which i think is great. It definately irritated her lungs at first but i guess she tolerates it ok now.

From my experience, if the HS is working properly, i don't think it would cause a chronic cough. If your daughter's chronic cough is caused by the HS it could be because she is not tolerating it well. I actually think (but this could be my imagination) that my daughter coughs less during the day then she used too...although she coughs much more during her treatments. It is sort of like she gets her coughing all in one go or something.

I agree talk to your doc about the coughing.

 

[okok]

Hi renee,

My daughter is on 3% HS and she definately coughs a lot during the treatments. Nebbing with albutural beforehand is susposed to help with that...

My understanding is that the coughing is good because it means they are clearing more mucus out...but i'm not sure. My daughter might have coughed more when she first started HS but now it is mostly during the treatments. I just remember being wary and worrying that the treatment was harming her but we stuck with it and have seen alot of improvements. I think from what our docs said it is important to do HS at least once a day. It is even better to do it 2 times a day. I think the frequency with which you do the treatments is even more important then the % but i am not sure. Please someone correct me if i am wrong. Since my daughter started HS she hasn't needed antibiotics as frequently as she used too which i think is great. It definately irritated her lungs at first but i guess she tolerates it ok now.

From my experience, if the HS is working properly, i don't think it would cause a chronic cough. If your daughter's chronic cough is caused by the HS it could be because she is not tolerating it well. I actually think (but this could be my imagination) that my daughter coughs less during the day then she used too...although she coughs much more during her treatments. It is sort of like she gets her coughing all in one go or something.

I agree talk to your doc about the coughing.

 

[ReneeP]

For those who are on HS, do you use 3% or 7% (or something else)... the doctor put my girls on 7% and I wonder if that's part of the problem. Maybe it's just too strong????

 

[ReneeP]

For those who are on HS, do you use 3% or 7% (or something else)... the doctor put my girls on 7% and I wonder if that's part of the problem. Maybe it's just too strong????

 

[ReneeP]

For those who are on HS, do you use 3% or 7% (or something else)... the doctor put my girls on 7% and I wonder if that's part of the problem. Maybe it's just too strong????

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.</end quote></div>

So I'm not the only one! I think the Tobra that I had to mix to nebulize worked better for me than the Tobi, too, and I was thinking I must just be nuts or weird- LOL! Tobi works pretty well for me, but not nearly as well as the Tobra did. Who knows?
And pulmozyme only works well for me if I take it twice a day. I was in the drug study, and my dr's said at the end that they thought I was one of the twice a day subjects. Went to once a day and it worked okay; twice a day is better.

I do have to say, my clinic doesn't push the new stuff- they just tell us it's out there, and let us decide if and when we want to try it- almost too much with my poor memory! <img src="i/expressions/face-icon-small-wink.gif" border="0">



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>
When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!



Caitlin

23 w/ b. cepacia</end quote></div>

And Amen to that! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I always want to know the who what how when where and whys <img src="i/expressions/face-icon-small-wink.gif" border="0"> .


And back to the OP <img src="i/expressions/face-icon-small-blush.gif" border="0"> , I use the 7% HS <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.</end quote></div>

So I'm not the only one! I think the Tobra that I had to mix to nebulize worked better for me than the Tobi, too, and I was thinking I must just be nuts or weird- LOL! Tobi works pretty well for me, but not nearly as well as the Tobra did. Who knows?
And pulmozyme only works well for me if I take it twice a day. I was in the drug study, and my dr's said at the end that they thought I was one of the twice a day subjects. Went to once a day and it worked okay; twice a day is better.

I do have to say, my clinic doesn't push the new stuff- they just tell us it's out there, and let us decide if and when we want to try it- almost too much with my poor memory! <img src="i/expressions/face-icon-small-wink.gif" border="0">



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>
When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!



Caitlin

23 w/ b. cepacia</end quote></div>

And Amen to that! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I always want to know the who what how when where and whys <img src="i/expressions/face-icon-small-wink.gif" border="0"> .


And back to the OP <img src="i/expressions/face-icon-small-blush.gif" border="0"> , I use the 7% HS <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>

I saw the same thing happen with Pulmozyme back when it first came out, and that NEVER worked for me. But it was pushed upon me so aggresively. TOBI also never worked for me. Oddly enough, back when TOBI was simply Tobramycin in a nebulizer cup (and not the manufactured-for-inhalation TOBI), it did work. Now, I dont know if this was because of a change in the medicine or a change in me.</end quote></div>

So I'm not the only one! I think the Tobra that I had to mix to nebulize worked better for me than the Tobi, too, and I was thinking I must just be nuts or weird- LOL! Tobi works pretty well for me, but not nearly as well as the Tobra did. Who knows?
And pulmozyme only works well for me if I take it twice a day. I was in the drug study, and my dr's said at the end that they thought I was one of the twice a day subjects. Went to once a day and it worked okay; twice a day is better.

I do have to say, my clinic doesn't push the new stuff- they just tell us it's out there, and let us decide if and when we want to try it- almost too much with my poor memory! <img src="i/expressions/face-icon-small-wink.gif" border="0">



<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catalinaohara</b></i>
When I was diagnosed only 20 yrs ago they didn't know a thing. They aren't suddenly geniuses in 20 yrs. Question everything!



Caitlin

23 w/ b. cepacia</end quote></div>

And Amen to that! <img src="i/expressions/face-icon-small-wink.gif" border="0"> I always want to know the who what how when where and whys <img src="i/expressions/face-icon-small-wink.gif" border="0"> .


And back to the OP <img src="i/expressions/face-icon-small-blush.gif" border="0"> , I use the 7% HS <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[mum2kj]

My daughter has been on 6% hypertonic saline for a 3 weeks now. When she first tried it (in the pari nebuliser cup) She got such a sore throat from it, everytime she used it. So We changed her neb cup to the one our hospital uses and she tolerates this well. Though she will only cough about 3 - 4 times while nebbing.

I don't know if its really doing her any good or not.

She is starting to cough during the day again, it may be the saline causing it or one of her bugs is acting up again. Not sure.

Kj didn't make the 10% improvement on the pulmozyme to get to stay on it. I want to try her on mucomyst but not sure if Australia has it.

 

[mum2kj]

My daughter has been on 6% hypertonic saline for a 3 weeks now. When she first tried it (in the pari nebuliser cup) She got such a sore throat from it, everytime she used it. So We changed her neb cup to the one our hospital uses and she tolerates this well. Though she will only cough about 3 - 4 times while nebbing.

I don't know if its really doing her any good or not.

She is starting to cough during the day again, it may be the saline causing it or one of her bugs is acting up again. Not sure.

Kj didn't make the 10% improvement on the pulmozyme to get to stay on it. I want to try her on mucomyst but not sure if Australia has it.

 

[mum2kj]

My daughter has been on 6% hypertonic saline for a 3 weeks now. When she first tried it (in the pari nebuliser cup) She got such a sore throat from it, everytime she used it. So We changed her neb cup to the one our hospital uses and she tolerates this well. Though she will only cough about 3 - 4 times while nebbing.

I don't know if its really doing her any good or not.

She is starting to cough during the day again, it may be the saline causing it or one of her bugs is acting up again. Not sure.

Kj didn't make the 10% improvement on the pulmozyme to get to stay on it. I want to try her on mucomyst but not sure if Australia has it.

 

[Scarlett81]

I think sometimes people (like myself and my mom growing up), are conditioned to think that coughing is not good. But when people start HS, they usually experience increased coughing for a period of time. This type of coughing is good. Irritating, but good bc its loosening and getting out some of the deeper junk in there that has to come out. HS is very abrasive, thats why it tastes so strong. So when it gets in there, its like rubbing your lungs down with steel wool!
I wouldn't worry and I'd give it alot more time with the HS. It took me a good 2 months to really get used to it, and to get over the initial coughing and wheezing affects from it. But the results have shown that HS is extrememly valuable to most cfers. Try to help them to stay on it. Their pfts could improve.