Ever stop taking your meds and feel better?

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
 
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
 
L

ladybug

New member
I'm posting the prescribing info. for pulmozyme on here for anyone who cares. Pretty cool stuff. I haven't read this in years. It appears they're referring to FVC when doing the study and not FEV1.

As stated in the article: "Patients with FVC >85% may benefit from twice a day dosing."

So, perhaps I would still benefit from it 2X a day. Although, it also appeared with long-term use the mean FEV1 with the once daily was slightly higher than the twice daily. So, I can see how my doc would say that for long term therapy twice daily may not be necessary.

This also points out that people can and do well on cyclical periods of pulmozyme, so perhaps skipping doses on a regular basis with your doc's consent would be alright.

Anyway, just thought it would be of interest to anyone who wants some info. on pulmo. And, thanks for bringing this all to light, Amy.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.gene.com/gene/products/information/opportunistic/pulmozyme/insert.jsp">http://www.gene.com/gene/produ...c/pulmozyme/insert.jsp</a>
 
L

ladybug

New member
I'm posting the prescribing info. for pulmozyme on here for anyone who cares. Pretty cool stuff. I haven't read this in years. It appears they're referring to FVC when doing the study and not FEV1.

As stated in the article: "Patients with FVC >85% may benefit from twice a day dosing."

So, perhaps I would still benefit from it 2X a day. Although, it also appeared with long-term use the mean FEV1 with the once daily was slightly higher than the twice daily. So, I can see how my doc would say that for long term therapy twice daily may not be necessary.

This also points out that people can and do well on cyclical periods of pulmozyme, so perhaps skipping doses on a regular basis with your doc's consent would be alright.

Anyway, just thought it would be of interest to anyone who wants some info. on pulmo. And, thanks for bringing this all to light, Amy.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.gene.com/gene/products/information/opportunistic/pulmozyme/insert.jsp">http://www.gene.com/gene/produ...c/pulmozyme/insert.jsp</a>
 
L

ladybug

New member
I'm posting the prescribing info. for pulmozyme on here for anyone who cares. Pretty cool stuff. I haven't read this in years. It appears they're referring to FVC when doing the study and not FEV1.

As stated in the article: "Patients with FVC >85% may benefit from twice a day dosing."

So, perhaps I would still benefit from it 2X a day. Although, it also appeared with long-term use the mean FEV1 with the once daily was slightly higher than the twice daily. So, I can see how my doc would say that for long term therapy twice daily may not be necessary.

This also points out that people can and do well on cyclical periods of pulmozyme, so perhaps skipping doses on a regular basis with your doc's consent would be alright.

Anyway, just thought it would be of interest to anyone who wants some info. on pulmo. And, thanks for bringing this all to light, Amy.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.gene.com/gene/products/information/opportunistic/pulmozyme/insert.jsp">http://www.gene.com/gene/produ...c/pulmozyme/insert.jsp</a>
 
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