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missT
11-02-2010, 11:57 PM
Hi all, I have just started the PTC 124 and would love to talk to others out there who are also on the drug or placebo. I know there are approx 200 people in the trial and I have spoken to 3 so far. If you are on the drug and would like to pm me-please do. This really might be an amazing, life saving drug for the X mutation CFers out there.

missT
11-02-2010, 11:57 PM
Hi all, I have just started the PTC 124 and would love to talk to others out there who are also on the drug or placebo. I know there are approx 200 people in the trial and I have spoken to 3 so far. If you are on the drug and would like to pm me-please do. This really might be an amazing, life saving drug for the X mutation CFers out there.

missT
11-02-2010, 11:57 PM
Hi all, I have just started the PTC 124 and would love to talk to others out there who are also on the drug or placebo. I know there are approx 200 people in the trial and I have spoken to 3 so far. If you are on the drug and would like to pm me-please do. This really might be an amazing, life saving drug for the X mutation CFers out there.

Liza
11-03-2010, 01:04 AM
Hi MissT, I'd like to hear how you are doing on the trial. You have one of my daughters nonsense mutations. My girls' mutations are both nonsense mutations.

It would be interesting to hear if you feel like you have the real medicine or placebo.

Liza
11-03-2010, 01:04 AM
Hi MissT, I'd like to hear how you are doing on the trial. You have one of my daughters nonsense mutations. My girls' mutations are both nonsense mutations.

It would be interesting to hear if you feel like you have the real medicine or placebo.

Liza
11-03-2010, 01:04 AM
Hi MissT, I'd like to hear how you are doing on the trial. You have one of my daughters nonsense mutations. My girls' mutations are both nonsense mutations.
<br />
<br />It would be interesting to hear if you feel like you have the real medicine or placebo.

momtocrazel
11-04-2010, 12:37 AM
i am also very interested in your experience. my little girl has W1282x, f508. She was dx with nbs and is 5 months. i am still struggling with her dx and hope that this drug will be both effective and available soon.

momtocrazel
11-04-2010, 12:37 AM
i am also very interested in your experience. my little girl has W1282x, f508. She was dx with nbs and is 5 months. i am still struggling with her dx and hope that this drug will be both effective and available soon.

momtocrazel
11-04-2010, 12:37 AM
i am also very interested in your experience. my little girl has W1282x, f508. She was dx with nbs and is 5 months. i am still struggling with her dx and hope that this drug will be both effective and available soon.

robert321
11-04-2010, 01:02 AM
Be careful discussing your results of a drug trial. You could accidentally skew the overall results of the trial, they don't take into consideration patients discussing the results and are hoping for blind experiences.

robert321
11-04-2010, 01:02 AM
Be careful discussing your results of a drug trial. You could accidentally skew the overall results of the trial, they don't take into consideration patients discussing the results and are hoping for blind experiences.

robert321
11-04-2010, 01:02 AM
Be careful discussing your results of a drug trial. You could accidentally skew the overall results of the trial, they don't take into consideration patients discussing the results and are hoping for blind experiences.

missT
11-04-2010, 01:59 PM
thanks Robert for your advice. I really don't think discussing anything privately is going to change results. Everything in these trials is monitored and it is the data they are looking at...what I say does not influence my health or anyone else's either. I am not discussing anything on an open forum to feel free to pm me.

missT
11-04-2010, 01:59 PM
thanks Robert for your advice. I really don't think discussing anything privately is going to change results. Everything in these trials is monitored and it is the data they are looking at...what I say does not influence my health or anyone else's either. I am not discussing anything on an open forum to feel free to pm me.

missT
11-04-2010, 01:59 PM
thanks Robert for your advice. I really don't think discussing anything privately is going to change results. Everything in these trials is monitored and it is the data they are looking at...what I say does not influence my health or anyone else's either. I am not discussing anything on an open forum to feel free to pm me.

inna1977
06-22-2011, 08:15 PM
hi !! jsut wondering if anyone has started the open label for ataluren and if yes how are they feeling?
so hopeful for this drug <img src="i/expressions/face-icon-small-smile.gif" border="0">

inna1977
06-22-2011, 08:15 PM
hi !! jsut wondering if anyone has started the open label for ataluren and if yes how are they feeling?
so hopeful for this drug <img src="i/expressions/face-icon-small-smile.gif" border="0">

inna1977
06-22-2011, 08:15 PM
hi !! jsut wondering if anyone has started the open label for ataluren and if yes how are they feeling?
<br />so hopeful for this drug <img src="i/expressions/face-icon-small-smile.gif" border="0">