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I am a bleeder and I'm wondering how mine compare with others- what's the frequency of your bleeds? The amount? Always correlated with infection? What do you do to treat your bleeds? Unfortunately mine seem to be coming with increasing frequency and I'm wondering if that's normal. No infection...

I am a bleeder and I'm wondering how mine compare with others- what's the frequency of your bleeds? The amount? Always correlated with infection? What do you do to treat your bleeds? Unfortunately mine seem to be coming with increasing frequency and I'm wondering if that's normal. No infection...

Amen sister!!

Amen sister!!

Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post...

Another FYI-- my doctor spoke w the cf foundation after I asked to try it. They are going to formally take a stance of strongly discouraging off-label prescriptions for it. So this reinforces the time sensitive nature of trying it. If I get my hands on it we are going to do a pre and post...

Does anyone recall when vx770 was originally projected to make it through trials?!? Seems like 2016 for 661 is a long time--- and that 770 went from phase 2 to approved much quicker...

Does anyone recall when vx770 was originally projected to make it through trials?!? Seems like 2016 for 661 is a long time--- and that 770 went from phase 2 to approved much quicker...

So I heard through the local CF chapter grapevine that they are considering using pancreatic sufficiency as an indicator of the effectiveness of Kalydeco in other mutations.... I suppose this is because sufficiency (or partial sufficiency) might indicate some CFTR function. In the past my docs...

So I heard through the local CF chapter grapevine that they are considering using pancreatic sufficiency as an indicator of the effectiveness of Kalydeco in other mutations.... I suppose this is because sufficiency (or partial sufficiency) might indicate some CFTR function. In the past my docs...

Caroline- so interesting how things are not quite matching up... it sounded pretty straightforward from how Amy described it.. and yet when I asked my previous dr about it she said I woud likely have to petition Vertex?! Just let us try! I'm going to make my case and call my new dr tomorrow.

Caroline- so interesting how things are not quite matching up... it sounded pretty straightforward from how Amy described it.. and yet when I asked my previous dr about it she said I woud likely have to petition Vertex?! Just let us try! I'm going to make my case and call my new dr tomorrow.

After hearing about Amy's luck, I went online to my insurance website, logged in, and did a search for Kalydeco. It shows a co-pay of $45.... so does this mean that I only need a script and I'm good to go?

After hearing about Amy's luck, I went online to my insurance website, logged in, and did a search for Kalydeco. It shows a co-pay of $45.... so does this mean that I only need a script and I'm good to go?

But wouldn't vertex adjust the supply if demand was higher than anticipated?? I certainly won't elbow my way in for the chance at a pill that might provide a little improvement when there is someone with G551D in dire need of it. But if Vertex would adjust their manufacturing of Kalydeco to...

But wouldn't vertex adjust the supply if demand was higher than anticipated?? I certainly won't elbow my way in for the chance at a pill that might provide a little improvement when there is someone with G551D in dire need of it. But if Vertex would adjust their manufacturing of Kalydeco to...

Good thoughts Jonathan- I completely respect the process and understand the necessities of trials, etc. However, if a drug is available that might provide some improvement why wait? I am blessed to have good pft's that I have worked hard for... but a big part of that has been doing...

Good thoughts Jonathan- I completely respect the process and understand the necessities of trials, etc. However, if a drug is available that might provide some improvement why wait? I am blessed to have good pft's that I have worked hard for... but a big part of that has been doing...

I, like Amy, am interested in trying Kalydeco even though I am DF508/2184delA. I called my doctor last week to see about that process. She said that it would likely require some kind of petition to Vertex. Because it is an orphan drug (and approved for use with G551D), Vertex is not making...

I, like Amy, am interested in trying Kalydeco even though I am DF508/2184delA. I called my doctor last week to see about that process. She said that it would likely require some kind of petition to Vertex. Because it is an orphan drug (and approved for use with G551D), Vertex is not making...