People on the new drugs: How do you REALLY feel?

Nedda

New member
I found the vertex abstact... it didn't list R560T in the mutations they tried. <img src="i/expressions/face-icon-small-sad.gif" border="0"> *sigh*.
 

Nedda

New member
I found the vertex abstact... it didn't list R560T in the mutations they tried. <img src="i/expressions/face-icon-small-sad.gif" border="0"> *sigh*.
 

bigstar

New member
This is a wonderful post! We need feedback rom people using new drugs! I personally am very curious to know! Please repost back with your experiences, every little bit is giving other people hope and knowledge! Anyone on Vrtx 809? I would like to know about df508<br>
 

bigstar

New member
This is a wonderful post! We need feedback rom people using new drugs! I personally am very curious to know! Please repost back with your experiences, every little bit is giving other people hope and knowledge! Anyone on Vrtx 809? I would like to know about df508<br>
 

bigstar

New member
This is a wonderful post! We need feedback rom people using new drugs! I personally am very curious to know! Please repost back with your experiences, every little bit is giving other people hope and knowledge! Anyone on Vrtx 809? I would like to know about df508<br>
 

Caringmom

New member
Nedda - even though they may have not mentioned the mutation specifically, remember that they are categorized by the way they function/malfunction.  Therefore Class III mutations should be similar in their malfunction.  If the medication helps one it should help the others in that class to at least a reasonable degree.  Do not get discouraged!<br>
 

Caringmom

New member
Nedda - even though they may have not mentioned the mutation specifically, remember that they are categorized by the way they function/malfunction. Therefore Class III mutations should be similar in their malfunction. If the medication helps one it should help the others in that class to at least a reasonable degree. Do not get discouraged!<br>
 

Caringmom

New member
Nedda - even though they may have not mentioned the mutation specifically, remember that they are categorized by the way they function/malfunction. Therefore Class III mutations should be similar in their malfunction. If the medication helps one it should help the others in that class to at least a reasonable degree. Do not get discouraged!<br>
 
K

Kaethe108

Guest
On our First visit in the CF Centre the Prof told us about the 5 different Effects the various mutations cause. And that the New medicaments Target These different effects. So my guess would also Be that a Drug is Designed for a Class of mutations and Not One specific Mutation alone.
 
K

Kaethe108

Guest
On our First visit in the CF Centre the Prof told us about the 5 different Effects the various mutations cause. And that the New medicaments Target These different effects. So my guess would also Be that a Drug is Designed for a Class of mutations and Not One specific Mutation alone.
 
K

Kaethe108

Guest
On our First visit in the CF Centre the Prof told us about the 5 different Effects the various mutations cause. And that the New medicaments Target These different effects. So my guess would also Be that a Drug is Designed for a Class of mutations and Not One specific Mutation alone.
 

Hannah08

New member
Im currently in the Atluren study and ive had the real drug for a couple of months.  I was super discouraged last time I went.  Apparently a lot of people have started showing kidney problems, and pfts aren't going as high as they thought they would.  I guess its unclear wether they'll actually get FDA approval in the end.  Im super frustraited, this study has been the biggest pain in the ass i have ever had to put up with, and it turns out it might not have been worth it.  Im more than likely going to drop out.  Its not worth risking my kidneys and I can't take the repeated blood draws and retesting they are CONSTANTLY making me do.
 

Hannah08

New member
Im currently in the Atluren study and ive had the real drug for a couple of months. I was super discouraged last time I went. Apparently a lot of people have started showing kidney problems, and pfts aren't going as high as they thought they would. I guess its unclear wether they'll actually get FDA approval in the end. Im super frustraited, this study has been the biggest pain in the ass i have ever had to put up with, and it turns out it might not have been worth it. Im more than likely going to drop out. Its not worth risking my kidneys and I can't take the repeated blood draws and retesting they are CONSTANTLY making me do.
 

Hannah08

New member
Im currently in the Atluren study and ive had the real drug for a couple of months. I was super discouraged last time I went. Apparently a lot of people have started showing kidney problems, and pfts aren't going as high as they thought they would. I guess its unclear wether they'll actually get FDA approval in the end. Im super frustraited, this study has been the biggest pain in the ass i have ever had to put up with, and it turns out it might not have been worth it. Im more than likely going to drop out. Its not worth risking my kidneys and I can't take the repeated blood draws and retesting they are CONSTANTLY making me do.
 
K

Kaethe108

Guest
I am sorry to hear that the trial gave you such a hard time!
We will have to wait for the complete data. Until then we should not get discouraged.
Can you tell whar kidney problems you have?
And did you notice any health improvement since taking the drug?
 
K

Kaethe108

Guest
I am sorry to hear that the trial gave you such a hard time!
We will have to wait for the complete data. Until then we should not get discouraged.
Can you tell whar kidney problems you have?
And did you notice any health improvement since taking the drug?
 
K

Kaethe108

Guest
I am sorry to hear that the trial gave you such a hard time!
<br />We will have to wait for the complete data. Until then we should not get discouraged.
<br />Can you tell whar kidney problems you have?
<br />And did you notice any health improvement since taking the drug?
 
Top