Just curious

missT

Member
thank you for asking this question. I m currently in the trial. Phase 3 is completed and now we go to real drug. I heard that there were over 200 people enrolled in the study. I posted many times asking other PTCer's (atalurens) to pm me back. I only heard back from 3 or 4 people. I can honestly say that results have not been "woo hoo" like the vertex drug. I have heard talk about the kidney issues but until results come out we really wont know. I really wish other Atalurens would post. It seemed with VX770 the G551D people were dancing in the street.
 

missT

Member
thank you for asking this question. I m currently in the trial. Phase 3 is completed and now we go to real drug. I heard that there were over 200 people enrolled in the study. I posted many times asking other PTCer's (atalurens) to pm me back. I only heard back from 3 or 4 people. I can honestly say that results have not been "woo hoo" like the vertex drug. I have heard talk about the kidney issues but until results come out we really wont know. I really wish other Atalurens would post. It seemed with VX770 the G551D people were dancing in the street.
 

missT

Member
thank you for asking this question. I m currently in the trial. Phase 3 is completed and now we go to real drug. I heard that there were over 200 people enrolled in the study. I posted many times asking other PTCer's (atalurens) to pm me back. I only heard back from 3 or 4 people. I can honestly say that results have not been "woo hoo" like the vertex drug. I have heard talk about the kidney issues but until results come out we really wont know. I really wish other Atalurens would post. It seemed with VX770 the G551D people were dancing in the street.
 

missT

Member
thank you for asking this question. I m currently in the trial. Phase 3 is completed and now we go to real drug. I heard that there were over 200 people enrolled in the study. I posted many times asking other PTCer's (atalurens) to pm me back. I only heard back from 3 or 4 people. I can honestly say that results have not been "woo hoo" like the vertex drug. I have heard talk about the kidney issues but until results come out we really wont know. I really wish other Atalurens would post. It seemed with VX770 the G551D people were dancing in the street.
 

momtohazel

New member
<P>thanks Harriet for the link...I had been unable to find anything written recently...but even though this article is from 7/2011 it does not shed much new light...</P>
<P></P>
<P>miss T - thanks for the update, i did notrealize that the trial had been completed. although, that does make sense if we can expect to see the results of phase III trials in the first half of 2012</P>
<P></P>
<P>still unsure though why the media and the CF community not speaking about this drug and its potential benefit (not to mention the other illnesses it could help)</P>
<P></P>
<P>i have been hearing about the vertex drugs since my daughter's diagnosis even though it would not help her. and before completion of phase III or application for FDA approval</P>
<P></P>
<P>and the combo drugs are far behind ataluren in the pipeline, yet we hear so much about them</P>
<P></P>
<P>i hope it is not because the results are less than expected, but after reading your post miss T i wonder if that is the reason?</P>
<P></P>
<P>keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
 

momtohazel

New member
<P>thanks Harriet for the link...I had been unable to find anything written recently...but even though this article is from 7/2011 it does not shed much new light...</P>
<P></P>
<P>miss T - thanks for the update, i did notrealize that the trial had been completed. although, that does make sense if we can expect to see the results of phase III trials in the first half of 2012</P>
<P></P>
<P>still unsure though why the media and the CF community not speaking about this drug and its potential benefit (not to mention the other illnesses it could help)</P>
<P></P>
<P>i have been hearing about the vertex drugs since my daughter's diagnosis even though it would not help her. and before completion of phase III or application for FDA approval</P>
<P></P>
<P>and the combo drugs are far behind ataluren in the pipeline, yet we hear so much about them</P>
<P></P>
<P>i hope it is not because the results are less than expected, but after reading your post miss T i wonder if that is the reason?</P>
<P></P>
<P>keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
 

momtohazel

New member
<P>thanks Harriet for the link...I had been unable to find anything written recently...but even though this article is from 7/2011 it does not shed much new light...</P>
<P></P>
<P>miss T - thanks for the update, i did notrealize that the trial had been completed. although, that does make sense if we can expect to see the results of phase III trials in the first half of 2012</P>
<P></P>
<P>still unsure though why the media and the CF community not speaking about this drug and its potential benefit (not to mention the other illnesses it could help)</P>
<P></P>
<P>i have been hearing about the vertex drugs since my daughter's diagnosis even though it would not help her. and before completion of phase III or application for FDA approval</P>
<P></P>
<P>and the combo drugs are far behind ataluren in the pipeline, yet we hear so much about them</P>
<P></P>
<P>i hope it is not because the results are less than expected, but after reading your post miss T i wonder if that is the reason?</P>
<P></P>
<P>keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
<P></P>
 

missT

Member
what is also interesting is that different X mutations are responding differently. I believe that the subjects in Israel with W1282X are having better results...again, lets wait for the published reports. I have the same mutation so feel free to pm me after I start real drug.
 

missT

Member
what is also interesting is that different X mutations are responding differently. I believe that the subjects in Israel with W1282X are having better results...again, lets wait for the published reports. I have the same mutation so feel free to pm me after I start real drug.
 

missT

Member
what is also interesting is that different X mutations are responding differently. I believe that the subjects in Israel with W1282X are having better results...again, lets wait for the published reports. I have the same mutation so feel free to pm me after I start real drug.
 

saveferris2009

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

t





keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="">


</end quote>

<br><br>Definitely understand.<br>Imagine my mom - she has been waiting for 30 years for something on the horizon to help her little girl.<br>We are all certainly hoping for the best for all of these drugs, no question about it! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

saveferris2009

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

t





keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="">


</end quote>

<br><br>Definitely understand.<br>Imagine my mom - she has been waiting for 30 years for something on the horizon to help her little girl.<br>We are all certainly hoping for the best for all of these drugs, no question about it! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

saveferris2009

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

t





keeping my fingers crossed. just need a little hope every now and then that there is something on the horizon that can help my little girl <img src="">


</end quote>

<br><br>Definitely understand.<br>Imagine my mom - she has been waiting for 30 years for something on the horizon to help her little girl.<br>We are all certainly hoping for the best for all of these drugs, no question about it! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anien2

New member
My doctor told me that phase III for ataluren is going to last two more extra years, and that it could mean that there is something that needs to be fixed, but it also means that they think that it can be done, since they keep on spending lots of money on this drug.

The only thing he knew for sure is that phase III wont be finished until 2013, anybody knows anything about it??? if the info is confidential a PM is wellcomed.
 

anien2

New member
My doctor told me that phase III for ataluren is going to last two more extra years, and that it could mean that there is something that needs to be fixed, but it also means that they think that it can be done, since they keep on spending lots of money on this drug.

The only thing he knew for sure is that phase III wont be finished until 2013, anybody knows anything about it??? if the info is confidential a PM is wellcomed.
 

anien2

New member
My doctor told me that phase III for ataluren is going to last two more extra years, and that it could mean that there is something that needs to be fixed, but it also means that they think that it can be done, since they keep on spending lots of money on this drug.

The only thing he knew for sure is that phase III wont be finished until 2013, anybody knows anything about it??? if the info is confidential a PM is wellcomed.
 

missT

Member
phase 3 is definately done....I am 100% sure of this. We should hear results in early 2012. We are all now on open label. I have also heard there may be a potentiator for ataluren..but that is just talk.
 
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