What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

ataluren

inna1977

New member
just wondering if anyone is on the open label ataluren yet and if they are feeling any different.  <div>thanks</div>
 

momtohazel

New member
i am also interested to hear folks experiences who are taking this. i often wonder why we don't hear more about it?<br>
 

momtohazel

New member
i am also interested to hear folks experiences who are taking this. i often wonder why we don't hear more about it?<br>
 

momtohazel

New member
i am also interested to hear folks experiences who are taking this. i often wonder why we don't hear more about it?<br>
 

missT

Member
I am on the drug now but the open label has not started yet....but soon. I dont' know if I am on drug or placebo. If anyone wants to pm me about the progress please feel free.
 

missT

Member
I am on the drug now but the open label has not started yet....but soon. I dont' know if I am on drug or placebo. If anyone wants to pm me about the progress please feel free.
 

missT

Member
I am on the drug now but the open label has not started yet....but soon. I dont' know if I am on drug or placebo. If anyone wants to pm me about the progress please feel free.<BR>
 

inna1977

New member
<A HREF="http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684">http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684</A>
 

inna1977

New member
<A HREF="http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684">http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684</A>
 

inna1977

New member
<A HREF="http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684">http://ptct.client.shareholder.com/releasedetail.cfm?ReleaseID=588684</A>
 

Hannah08

New member
I just started open label about a month ago. I pretty much know that I had the placebo in the closed label (the real stuff tastes like s***, if yours doesn't you dont have the real thing hahaha). They said it might take a couple of months to start feeling better, but I have noticed that mucus is becoming easier and easier to bring up, and its almost like it is thinner. Like I said, I don't think I would have started to notice full effects yet, but I think the mucus thing is a good sign.
 

Hannah08

New member
I just started open label about a month ago. I pretty much know that I had the placebo in the closed label (the real stuff tastes like s***, if yours doesn't you dont have the real thing hahaha). They said it might take a couple of months to start feeling better, but I have noticed that mucus is becoming easier and easier to bring up, and its almost like it is thinner. Like I said, I don't think I would have started to notice full effects yet, but I think the mucus thing is a good sign.
 

Hannah08

New member
I just started open label about a month ago. I pretty much know that I had the placebo in the closed label (the real stuff tastes like s***, if yours doesn't you dont have the real thing hahaha). They said it might take a couple of months to start feeling better, but I have noticed that mucus is becoming easier and easier to bring up, and its almost like it is thinner. Like I said, I don't think I would have started to notice full effects yet, but I think the mucus thing is a good sign.
 

missT

Member
Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.
 

missT

Member
Hannah08, I am so glad you responded. I feel so alone in my experience. i am going to PM you. If there are others out there on open label can you please share your experiences. I have been on placebo/drug for a year and I am so depressed about this. I start open soon.
 
Top