vx770

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musclemania70

New member
Are people allowed to discuss their personal results with this drug yet? If not, when?

I keep reading the 'news feeds' about the results but I was wondering when people would be able to share THEIR OWN experiences with this drug.

Thanks!
 
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musclemania70

New member
Are people allowed to discuss their personal results with this drug yet? If not, when?

I keep reading the 'news feeds' about the results but I was wondering when people would be able to share THEIR OWN experiences with this drug.

Thanks!
 
M

musclemania70

New member
Are people allowed to discuss their personal results with this drug yet? If not, when?
<br />
<br />I keep reading the 'news feeds' about the results but I was wondering when people would be able to share THEIR OWN experiences with this drug.
<br />
<br />Thanks!
 
L

LouLou

New member
Hi, We are under contract to not discuss our individual results on an open forum while we are in the study. Those who participated in Ph. 3 were offered open label extension (drug only, no placebo study) which does function as another leg of the study with visits every 12 weeks to the participating hospital. We are under the same rules of confidentiality while in OLE. OLE will last 96 wks or when the drug becomes approved by the FDA. You'll hear more experiences when the drug goes to market, until then you can read all the press including two individual stories I can think of Emily Schaller and another gal from Ph. 2.
 
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LouLou

New member
Hi, We are under contract to not discuss our individual results on an open forum while we are in the study. Those who participated in Ph. 3 were offered open label extension (drug only, no placebo study) which does function as another leg of the study with visits every 12 weeks to the participating hospital. We are under the same rules of confidentiality while in OLE. OLE will last 96 wks or when the drug becomes approved by the FDA. You'll hear more experiences when the drug goes to market, until then you can read all the press including two individual stories I can think of Emily Schaller and another gal from Ph. 2.
 
L

LouLou

New member
Hi, We are under contract to not discuss our individual results on an open forum while we are in the study. Those who participated in Ph. 3 were offered open label extension (drug only, no placebo study) which does function as another leg of the study with visits every 12 weeks to the participating hospital. We are under the same rules of confidentiality while in OLE. OLE will last 96 wks or when the drug becomes approved by the FDA. You'll hear more experiences when the drug goes to market, until then you can read all the press including two individual stories I can think of Emily Schaller and another gal from Ph. 2.
 
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LouLou

New member
Everything you read is on track with what I'm hearing everyone is experiencing. No one wants to break the rules because we don't want to loose access to this magical pill. Do you have G551D or another missense mutation?
 
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LouLou

New member
Everything you read is on track with what I'm hearing everyone is experiencing. No one wants to break the rules because we don't want to loose access to this magical pill. Do you have G551D or another missense mutation?
 
L

LouLou

New member
Everything you read is on track with what I'm hearing everyone is experiencing. No one wants to break the rules because we don't want to loose access to this magical pill. Do you have G551D or another missense mutation?
 
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musclemania70

New member
Nope, I am a double delta.
I can't participate in the combo trial either b/c I can't afford NOT to take HS and my fev1 is right under the threshold. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I was curious to see others experience with the 770 and how effective it was...
 
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musclemania70

New member
Nope, I am a double delta.
I can't participate in the combo trial either b/c I can't afford NOT to take HS and my fev1 is right under the threshold. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I was curious to see others experience with the 770 and how effective it was...
 
M

musclemania70

New member
Nope, I am a double delta.
<br />I can't participate in the combo trial either b/c I can't afford NOT to take HS and my fev1 is right under the threshold. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I was curious to see others experience with the 770 and how effective it was...
 
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dasjsmum

New member
I can tell you that everything you have read from the press releases is true, real and being experienced by the people on the drug.
 
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dasjsmum

New member
I can tell you that everything you have read from the press releases is true, real and being experienced by the people on the drug.
 
D

dasjsmum

New member
I can tell you that everything you have read from the press releases is true, real and being experienced by the people on the drug.
 
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missT

Member
What is a missense mutation? What class? I have r114h which I think is class 4. Is the G mutation class three or four?
 
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missT

Member
What is a missense mutation? What class? I have r114h which I think is class 4. Is the G mutation class three or four?
 
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