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<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote></div><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote></div><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
dasjdmum's son was only insufficient for 5 month!
If I understood correctly the pancreas gets more and more "scars" when it is blocked by the thick mucus and gets destroyed. If somebody was insufficient for many years, the tissue can probaly not be "rescued" anymore.
Please correct me if I am wrong.</end quote><br><br>Correction to Kaethe108: The original message said he's had pancrease insufficiency SINCE 5 months old - meaning for the last 32 years. <br>
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
my bicarbonate levels have been scary low, which isnt that big of a deal... but the people who were running the study from where I was going said that people were having major kidney issues, from stones to pouring blood into urine. I guess the trials in the UK released a bunch more info on it, but the USA ptcTherapeutics are keeping pretty quiet about it. Theyre doubting it will actually get FDA approval in the end. The raise in PFTs just aren't worth the risk of kidney damage... they were super excited about vertex (sp?) though, much more benefits with A LOT less trouble... heres hoping!
dream2live
New member
I have never of these drugs and I'm curious to know how they effect your lungs, etc. I will keep this topic subscribed, so I can keep up with latest. Thank you
dream2live
New member
I have never of these drugs and I'm curious to know how they effect your lungs, etc. I will keep this topic subscribed, so I can keep up with latest. Thank you
dream2live
New member
I have never of these drugs and I'm curious to know how they effect your lungs, etc. I will keep this topic subscribed, so I can keep up with latest. Thank you<BR>
sorry Hannah, that is really disappointing for you. Thank you for doing the trial, I know how much committment undertaking a trial means. Atluren was the first of it's kind (pre vertex) and I can remember how excited we all were about it, it's such a shame it doesnt seem to be having the outcomes hoped for <img src="i/expressions/face-icon-small-sad.gif" border="0">
I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
Regarding
I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
Regarding
sorry Hannah, that is really disappointing for you. Thank you for doing the trial, I know how much committment undertaking a trial means. Atluren was the first of it's kind (pre vertex) and I can remember how excited we all were about it, it's such a shame it doesnt seem to be having the outcomes hoped for <img src="i/expressions/face-icon-small-sad.gif" border="0">
I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
Regarding
I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
Regarding
sorry Hannah, that is really disappointing for you. Thank you for doing the trial, I know how much committment undertaking a trial means. Atluren was the first of it's kind (pre vertex) and I can remember how excited we all were about it, it's such a shame it doesnt seem to be having the outcomes hoped for <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
<br />
<br />Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
<br />
<br />They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
<br />
<br />Regarding
<br />
<br />I hope you will benefit from the 770 or other similar drug. My son has not encountered any problems with the 770 and no/limited (?) adverse effects were reported in the trial outcomes, just hope it continues...I worked out he's been on the trial for nearly two years.
<br />
<br />Regarding the pancreas etx., you are right, my son has used enzymes since he was 5mths old and is now 32. He was diagnosed due to failure to thrive. I did not expect him not to need enzymes, my understanding was that the pancreas was scarred and unable to be recovered. Anyhow, he is an adult and feels he no longer requires the enzymes and only needs them if he has something with a lot of fat (say pizza). We dont know what his pancreatic functioning is on the v770 because they havent been testing for that.
<br />
<br />They have taken blood and sweat tests every visit I think (at least during the closed trial). We know that the sodium levels dropped substantially....maybe the pancreas isnt scarred after all and is just clogged?? Dont know at this stage, only that he isnt using enzymes and hasnt suffered any ill effects from that including smelly/oily poos (and we know what cf poos are like without enzymes haha).
<br />
<br />Regarding