Recent content by knobby

  1. K

    Moving to NY, looking for CF center for daughter

    This is a great tool by the CFF: https://www.cff.org/ccd/ Once you select your filter criteria, you'll get a list of all care centers in the area. The names of the care centers are links (they're in black text so it's not obvious). It will allow you to compare each center based on patient lung...
  2. K

    Warning to those with the A455E mutation

    Hi RWCO, We work with one of the best CF centers in the country - Boston Children's Hospital. Can you please share a reference that details how chloride levels rise over time? From every study I have seen with this defect, the average chloride level is exactly what my son's was when he had it...
  3. K

    Warning to those with the A455E mutation

    Hi Jricci, Thanks so much for the comments and for the reply! Yes, I would love to see the full article. I had tried to get my son in that original quoted study but we are on opposite coasts so it didn't work out. I did send a note to Dr Nielson, study lead already as well. As for his other...
  4. K

    Warning to those with the A455E mutation

    Hi, I have been waiting 8 years for Ivacaftor to be approved for residual function CFTR mutations. The day finally came on May 17th and soon after, we had my son signed up and taking his first dose. We did this with a little trepidation based on the results of a small N-of-1 study...
  5. K

    Anyone on Kalydeco seen changes in LFT's?

    Saveferris, sorry about the bad link! I have no idea what Cymbalta even is. The appropriate link is http://pi.vrtx.com/files/uspi_ivacaftor.pdf Havoc, the MSDS has this for the Kalydeco from the link you sent: 11. TOXICOLOGICAL INFORMATION: RTECS#: ? Acute toxicity: none known ? Primary...
  6. K

    Anyone on Kalydeco seen changes in LFT's?

    From the prescription information (http://pi.lilly.com/us/cymbalta-pi.pdf), it looks like Kalydeco had a very similar LFT profile when compared to the those on the placebo. Based on the info below, it would appear the compound is extremely safe and has a very low risk of having an impact on...
  7. K

    vx-661

    From what I've always read, Vertex never believed that vx-809 would completely treat CF, even when combined with vx-770 so continued development of more effective compounds was always the goal. One can speculate as to how effective vx-809 combined with vx-770 can be based on some of the in vitro...
  8. K

    vx-661

    From what I've always read, Vertex never believed that vx-809 would completely treat CF, even when combined with vx-770 so continued development of more effective compounds was always the goal. One can speculate as to how effective vx-809 combined with vx-770 can be based on some of the in vitro...
  9. K

    vx-661

    From what I've always read, Vertex never believed that vx-809 would completely treat CF, even when combined with vx-770 so continued development of more effective compounds was always the goal. <br />One can speculate as to how effective vx-809 combined with vx-770 can be based on some of the in...
  10. K

    FDA slowing progress

    The recent news articles about two big CF drugs not making it to market because of the FDA have left me a bit nervous. I have to wonder what impact this will have on the pharmas that have products in the pipeline. I believe in safety first but it is frustrating to see setbacks like this with...
  11. K

    FDA slowing progress

    The recent news articles about two big CF drugs not making it to market because of the FDA have left me a bit nervous. I have to wonder what impact this will have on the pharmas that have products in the pipeline. I believe in safety first but it is frustrating to see setbacks like this with...
  12. K

    FDA slowing progress

    The recent news articles about two big CF drugs not making it to market because of the FDA have left me a bit nervous. I have to wonder what impact this will have on the pharmas that have products in the pipeline. I believe in safety first but it is frustrating to see setbacks like this with...
  13. K

    FDA slowing progress

    The recent news articles about two big CF drugs not making it to market because of the FDA have left me a bit nervous. I have to wonder what impact this will have on the pharmas that have products in the pipeline. I believe in safety first but it is frustrating to see setbacks like this with...
  14. K

    FDA slowing progress

    The recent news articles about two big CF drugs not making it to market because of the FDA have left me a bit nervous. I have to wonder what impact this will have on the pharmas that have products in the pipeline. <br />I believe in safety first but it is frustrating to see setbacks like this...
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