People on the new drugs: How do you REALLY feel?

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Caringmom

New member
Kaethe, I read dasjdmum as saying her son had been pancreatic insufficient since he was 5 months old! Maybe she can tell us which she meant. However, I have heard from other people that they had to continue taking enzymes while on the new medicine since the pancreas was already damaged.

Nedda, I do think there is chance it will work on other Class III mutations. I don't know where you live but if I am not mistaken I thought I read there would be trials on other Class III mutations in the U.S. Also I thought I read that Europe was CONSIDERING making it available to other Class III mutations when approved. I am writing this from memory so I hope I am not steering you wrong. You should probably call the Vertex medical line and ask your questions if your doctor cannot tell you more.
 
C

Caringmom

New member
Kaethe, I read dasjdmum as saying her son had been pancreatic insufficient since he was 5 months old! Maybe she can tell us which she meant. However, I have heard from other people that they had to continue taking enzymes while on the new medicine since the pancreas was already damaged.

Nedda, I do think there is chance it will work on other Class III mutations. I don't know where you live but if I am not mistaken I thought I read there would be trials on other Class III mutations in the U.S. Also I thought I read that Europe was CONSIDERING making it available to other Class III mutations when approved. I am writing this from memory so I hope I am not steering you wrong. You should probably call the Vertex medical line and ask your questions if your doctor cannot tell you more.
 
C

Caringmom

New member
Kaethe, I read dasjdmum as saying her son had been pancreatic insufficient since he was 5 months old! Maybe she can tell us which she meant. However, I have heard from other people that they had to continue taking enzymes while on the new medicine since the pancreas was already damaged.
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<br />Nedda, I do think there is chance it will work on other Class III mutations. I don't know where you live but if I am not mistaken I thought I read there would be trials on other Class III mutations in the U.S. Also I thought I read that Europe was CONSIDERING making it available to other Class III mutations when approved. I am writing this from memory so I hope I am not steering you wrong. You should probably call the Vertex medical line and ask your questions if your doctor cannot tell you more.
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>

Maybe we should be careful with too much enthusiasm about the pancreas.

When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.

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>You are reading incorrectly. She is saying her son, (assuming diagnosed at birth) was insufficient from 5 months old FORWARD until 30-32 years old. Also you can rebuild the pancreas with certain acids, ALA is one of them, there are other supplements that are know (not scientifically proven) to rebuild BETA cells, (what the pancreas is made of).<br>
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>

Maybe we should be careful with too much enthusiasm about the pancreas.

When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.

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>You are reading incorrectly. She is saying her son, (assuming diagnosed at birth) was insufficient from 5 months old FORWARD until 30-32 years old. Also you can rebuild the pancreas with certain acids, ALA is one of them, there are other supplements that are know (not scientifically proven) to rebuild BETA cells, (what the pancreas is made of).<br>
 
I

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kaethe108</b></i>

Maybe we should be careful with too much enthusiasm about the pancreas.

When we started the treatment, our professor said that with our diagnosis we cannot hope that the pancreas will recover. So it seems that there is a possibility for recover if the organ is not too much damaged.

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>You are reading incorrectly. She is saying her son, (assuming diagnosed at birth) was insufficient from 5 months old FORWARD until 30-32 years old. Also you can rebuild the pancreas with certain acids, ALA is one of them, there are other supplements that are know (not scientifically proven) to rebuild BETA cells, (what the pancreas is made of).<br>
 
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