Ever stop taking your meds and feel better?

M

mneville

Guest
Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?
Megan
 
L

ladybug

New member
My doc has also suggested pulmo twice a day is usually not warranted unless you're "end stage" or nothing else seems to be working. Don't know why, but I did ask if I should do it 2X a day and was told no.

I've never been off pulmo. in the last 10-12 years, so I don't know how I'd be without it. Personally, I feel like if something is working to help STOP your health from declining as quickly as it would without the med, the med is still working. Its often tough to know if meds are doing good or not helping at all until we stop them and a year or two down the road we decline. How do you know you would have declined as quickly had you been on that med? Its really a "shot in the dark" to know whether a med is working for you in the long run. I was always told with pulmo that you may never FEEL the results of it, but it has been proven in studies to "slow" the decline of health with every day use. Of course, if its causing problems with quality of life and SOB and such, obviously its NOT doing any good. So, I guess there's that too.

Anyway, hope you get some answers.
 
L

ladybug

New member
My doc has also suggested pulmo twice a day is usually not warranted unless you're "end stage" or nothing else seems to be working. Don't know why, but I did ask if I should do it 2X a day and was told no.

I've never been off pulmo. in the last 10-12 years, so I don't know how I'd be without it. Personally, I feel like if something is working to help STOP your health from declining as quickly as it would without the med, the med is still working. Its often tough to know if meds are doing good or not helping at all until we stop them and a year or two down the road we decline. How do you know you would have declined as quickly had you been on that med? Its really a "shot in the dark" to know whether a med is working for you in the long run. I was always told with pulmo that you may never FEEL the results of it, but it has been proven in studies to "slow" the decline of health with every day use. Of course, if its causing problems with quality of life and SOB and such, obviously its NOT doing any good. So, I guess there's that too.

Anyway, hope you get some answers.
 
L

ladybug

New member
My doc has also suggested pulmo twice a day is usually not warranted unless you're "end stage" or nothing else seems to be working. Don't know why, but I did ask if I should do it 2X a day and was told no.

I've never been off pulmo. in the last 10-12 years, so I don't know how I'd be without it. Personally, I feel like if something is working to help STOP your health from declining as quickly as it would without the med, the med is still working. Its often tough to know if meds are doing good or not helping at all until we stop them and a year or two down the road we decline. How do you know you would have declined as quickly had you been on that med? Its really a "shot in the dark" to know whether a med is working for you in the long run. I was always told with pulmo that you may never FEEL the results of it, but it has been proven in studies to "slow" the decline of health with every day use. Of course, if its causing problems with quality of life and SOB and such, obviously its NOT doing any good. So, I guess there's that too.

Anyway, hope you get some answers.
 
F

Fruity

New member
hiya. when I was feeling congested and felt like I was on the verge
of an infection, I thought to take pulmozyme twice a day to see if
I got better... I felt like crap. I felt -more- congested and I got
Really tired and the only thing I could attribute it to was upping
the pulmozyme. I went back to once a day and I felt a lot better. I
don't know why it would be so different... It seemed so strange,
but I figure that this is true about all drugs: there is an
effective treatment range, an ineffective or toxic range and if
they say a certain dosage is what's most effective in general, it
shouldn't be tampered with unless an extreme case presents
itself.<br>
<br>
I stick to HS and pulmozyme, with the chest vest. The weather
changes have been noticable and my lungs feel every change so i'm
trying to stay ahead of the game an not skip. I will hardly Ever
skip pulmozyme unless I just can't stay up (I do it in the
evenings) and realize that sleep is more important to my body, but
i'll do it first thing morning.<br>
<br>
Best wishes <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
Ceci
 
F

Fruity

New member
hiya. when I was feeling congested and felt like I was on the verge
of an infection, I thought to take pulmozyme twice a day to see if
I got better... I felt like crap. I felt -more- congested and I got
Really tired and the only thing I could attribute it to was upping
the pulmozyme. I went back to once a day and I felt a lot better. I
don't know why it would be so different... It seemed so strange,
but I figure that this is true about all drugs: there is an
effective treatment range, an ineffective or toxic range and if
they say a certain dosage is what's most effective in general, it
shouldn't be tampered with unless an extreme case presents
itself.<br>
<br>
I stick to HS and pulmozyme, with the chest vest. The weather
changes have been noticable and my lungs feel every change so i'm
trying to stay ahead of the game an not skip. I will hardly Ever
skip pulmozyme unless I just can't stay up (I do it in the
evenings) and realize that sleep is more important to my body, but
i'll do it first thing morning.<br>
<br>
Best wishes <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
Ceci
 
F

Fruity

New member
hiya. when I was feeling congested and felt like I was on the verge
of an infection, I thought to take pulmozyme twice a day to see if
I got better... I felt like crap. I felt -more- congested and I got
Really tired and the only thing I could attribute it to was upping
the pulmozyme. I went back to once a day and I felt a lot better. I
don't know why it would be so different... It seemed so strange,
but I figure that this is true about all drugs: there is an
effective treatment range, an ineffective or toxic range and if
they say a certain dosage is what's most effective in general, it
shouldn't be tampered with unless an extreme case presents
itself.<br>
<br>
I stick to HS and pulmozyme, with the chest vest. The weather
changes have been noticable and my lungs feel every change so i'm
trying to stay ahead of the game an not skip. I will hardly Ever
skip pulmozyme unless I just can't stay up (I do it in the
evenings) and realize that sleep is more important to my body, but
i'll do it first thing morning.<br>
<br>
Best wishes <img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
<br>
Ceci
 
N

NoExcuses

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

Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?

Megan</end quote></div>

Hi Megan,

I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.

I'm going to try Mucomyst instead of HTS and Pulmozyme to see how it goes if my regular CF doc agrees to it.

I stopped Pulmozyme for about 3 months due of laziness about 2 years ago and I got pretty sick. I think the drug works well for me. HTS works pretty well for me too.

I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?

Megan</end quote></div>

Hi Megan,

I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.

I'm going to try Mucomyst instead of HTS and Pulmozyme to see how it goes if my regular CF doc agrees to it.

I stopped Pulmozyme for about 3 months due of laziness about 2 years ago and I got pretty sick. I think the drug works well for me. HTS works pretty well for me too.

I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

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

Amy- Just curious, do you still take Pulmozyne after meeting with Warwick? Our two year old does but I would really like to take him off and see if there is any difference? Warwick said chances are that he doesn't need it?

Megan</end quote></div>

Hi Megan,

I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.

I'm going to try Mucomyst instead of HTS and Pulmozyme to see how it goes if my regular CF doc agrees to it.

I stopped Pulmozyme for about 3 months due of laziness about 2 years ago and I got pretty sick. I think the drug works well for me. HTS works pretty well for me too.

I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
L

ladybug

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


I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.





I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Amy,

Is this a new insert? I'm just curious why when I started pulmozyme back when it first came out, why I wasn't ever put on 2 X per day? I had FEV1 in the 80s back then. Hmmm.... Interesting. Also interesting my doc would say to only use it 2X a day in "extreme" cases cause it often causes problems if used that often.... I guess that is another case of diff. docs, diff. interpretations.

Thanks!
 
L

ladybug

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


I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.





I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Amy,

Is this a new insert? I'm just curious why when I started pulmozyme back when it first came out, why I wasn't ever put on 2 X per day? I had FEV1 in the 80s back then. Hmmm.... Interesting. Also interesting my doc would say to only use it 2X a day in "extreme" cases cause it often causes problems if used that often.... I guess that is another case of diff. docs, diff. interpretations.

Thanks!
 
L

ladybug

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


I do take Pulmozyme. And I take it BID - the package insert sites studies that demonstrate Patients with PFT's higher than 70% benefit from twice a day dosing.





I'll keep u posted <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>

Amy,

Is this a new insert? I'm just curious why when I started pulmozyme back when it first came out, why I wasn't ever put on 2 X per day? I had FEV1 in the 80s back then. Hmmm.... Interesting. Also interesting my doc would say to only use it 2X a day in "extreme" cases cause it often causes problems if used that often.... I guess that is another case of diff. docs, diff. interpretations.

Thanks!
 
N

NoExcuses

New member
The reality of medicine is that not every doctor knows every single thing about every med.

If they did, those of us in pharmaceutical sales wouldn't have a job.

It is our job as patients to keep up on the information about our medication.

To answer your question, no, this information has been in the PI since FDA approval. I bet your doc didn't notice it and it sounds like you didn't either.

In fact, I noticed it myself about a year ago. And I've been on the drug since 1997.

It's a good lesson in patient's responsability on keeping up with info on their meds. And this site really helps! I think we all help point out these facts to each other and we are all healthier for it.
 
N

NoExcuses

New member
The reality of medicine is that not every doctor knows every single thing about every med.

If they did, those of us in pharmaceutical sales wouldn't have a job.

It is our job as patients to keep up on the information about our medication.

To answer your question, no, this information has been in the PI since FDA approval. I bet your doc didn't notice it and it sounds like you didn't either.

In fact, I noticed it myself about a year ago. And I've been on the drug since 1997.

It's a good lesson in patient's responsability on keeping up with info on their meds. And this site really helps! I think we all help point out these facts to each other and we are all healthier for it.
 
N

NoExcuses

New member
The reality of medicine is that not every doctor knows every single thing about every med.

If they did, those of us in pharmaceutical sales wouldn't have a job.

It is our job as patients to keep up on the information about our medication.

To answer your question, no, this information has been in the PI since FDA approval. I bet your doc didn't notice it and it sounds like you didn't either.

In fact, I noticed it myself about a year ago. And I've been on the drug since 1997.

It's a good lesson in patient's responsability on keeping up with info on their meds. And this site really helps! I think we all help point out these facts to each other and we are all healthier for it.
 
J

JazzysMom

New member
I have boosted my pulm up at times on my own. Currently doing it. I cant do it long term because of my hemoptysis, but every now & then when I have stuff that needs a bit extra I use it & that works for me.
 
J

JazzysMom

New member
I have boosted my pulm up at times on my own. Currently doing it. I cant do it long term because of my hemoptysis, but every now & then when I have stuff that needs a bit extra I use it & that works for me.
 
J

JazzysMom

New member
I have boosted my pulm up at times on my own. Currently doing it. I cant do it long term because of my hemoptysis, but every now & then when I have stuff that needs a bit extra I use it & that works for me.
 
L

ladybug

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





It is our job as patients to keep up on the information about our medication.



To answer your question, no, this information has been in the PI since FDA approval. I bet your doc didn't notice it and it sounds like you didn't either.



In fact, I noticed it myself about a year ago. And I've been on the drug since 1997.



<div class="FTQUOTE"><begin quote>



Apparently I missed this one. I always read the entire patient insert when I go on a new med.... even when I was in high school. So, perhaps I just wasn't paying attention. Either way, I'm lower than 70% now so it doesn't matter. Although, if you've just realized it on the insert, perhaps it wasn't around back when we started it? I know they add info. to those inserts on occasion when new studies and things come up (like advair now saying to use the smallest does possible and that it could cause serious issues if you take too much.... or antidepressants causing suicidal thoughts in some teens.... all info. after the initial pamphlets were printed when new research comes to light.) Either way, thanks for the info. I always considered myself a VERY educated patient... I've even told my docs I refuse to take certain IV meds after researching the side effects and benefits vs. risks. I don't recommend arguing with your doc unless you're sure of your position, as some don't take well to an educated patient! lol
 
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