Cystic Fibrosis Forum (EXP)

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Recent content by JD

  1. J

    Welcome Ambry Genetics

    Just wanted to add that VX-770 might also work for class IV mutations. Actually all mutations that have a certain amount of CFTR functionality could benefit from potentiators...
  2. J

    Pancreatitis or something????

    My son is 4 and he is also pancreatic sufficient. He had pancreatitis twice. His amylase went from <50 normal to 2,000. They also did a special MRI to see more which showed nothing. Pancreatic sufficient patients (in general the milder CF cases) are obviously much more prone to pancreatitis. My...
  3. J

    Pancreatitis or something????

    My son is 4 and he is also pancreatic sufficient. He had pancreatitis twice. His amylase went from <50 normal to 2,000. They also did a special MRI to see more which showed nothing. Pancreatic sufficient patients (in general the milder CF cases) are obviously much more prone to pancreatitis. My...
  4. J

    Pancreatitis or something????

    My son is 4 and he is also pancreatic sufficient. He had pancreatitis twice. His amylase went from <50 normal to 2,000. They also did a special MRI to see more which showed nothing. Pancreatic sufficient patients (in general the milder CF cases) are obviously much more prone to pancreatitis. My...
  5. J

    Pancreatitis or something????

    My son is 4 and he is also pancreatic sufficient. He had pancreatitis twice. His amylase went from <50 normal to 2,000. They also did a special MRI to see more which showed nothing. Pancreatic sufficient patients (in general the milder CF cases) are obviously much more prone to pancreatitis. My...
  6. J

    Pancreatitis or something????

    My son is 4 and he is also pancreatic sufficient. He had pancreatitis twice. His amylase went from <50 normal to 2,000. They also did a special MRI to see more which showed nothing. Pancreatic sufficient patients (in general the milder CF cases) are obviously much more prone to pancreatitis. My...
  7. J

    Amikin (Amikacin)--any familiar?

    We were on 2 weeks of Amikin and Fortam at home last year for PA (found by BAL). No side effects at all. Got completely rid of PA (proven by second BAL after treatment).
  8. J

    Gene Therapy

    No idea what happens in the US. But they are working on it in the UK: Run-in (patient evaluation) started in February 2008. Then a Phase IIa study with 100 participants will follow (not mutation related). http//www.cfgenetrials.ed.ac.uk/run-in/ <a target=_blank class=ftalternatingbarlinklarge...
  9. J

    Gene Therapy

    No idea what happens in the US. But they are working on it in the UK: Run-in (patient evaluation) started in February 2008. Then a Phase IIa study with 100 participants will follow (not mutation related). http//www.cfgenetrials.ed.ac.uk/run-in/ <a target=_blank class=ftalternatingbarlinklarge...
  10. J

    Gene Therapy

    No idea what happens in the US. But they are working on it in the UK: Run-in (patient evaluation) started in February 2008. Then a Phase IIa study with 100 participants will follow (not mutation related). http//www.cfgenetrials.ed.ac.uk/run-in/ <a target=_blank class=ftalternatingbarlinklarge...
  11. J

    Gene Therapy

    No idea what happens in the US. But they are working on it in the UK: Run-in (patient evaluation) started in February 2008. Then a Phase IIa study with 100 participants will follow (not mutation related). http//www.cfgenetrials.ed.ac.uk/run-in/ <a target=_blank class=ftalternatingbarlinklarge...
  12. J

    Gene Therapy

    No idea what happens in the US. But they are working on it in the UK: Run-in (patient evaluation) started in February 2008. Then a Phase IIa study with 100 participants will follow (not mutation related). <br /> <br />http//www.cfgenetrials.ed.ac.uk/run-in/ <br /> <br /><a target=_blank...
  13. J

    PS and Enzymes???

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> We've been struggling with weight issues and FTT as well. That is why she takes all the enzymes. PLUS we were told that PS patients are MORE likely to suffer from pancreatitis later on and that enzymes will...
  14. J

    PS and Enzymes???

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> We've been struggling with weight issues and FTT as well. That is why she takes all the enzymes. PLUS we were told that PS patients are MORE likely to suffer from pancreatitis later on and that enzymes will...
  15. J

    PS and Enzymes???

    <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i> We've been struggling with weight issues and FTT as well. That is why she takes all the enzymes. PLUS we were told that PS patients are MORE likely to suffer from pancreatitis later on and that enzymes will...
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