Anyone on Kayldeco and not G551D? Is it helping?

B

BleedOrange1968

New member
I want to try it and see if it helps me. I have f508 and 3272-26a>g and it's a splicing mutation class I or IV. It's known usually as having mild to moderate CF. I called my ins.(Cigna) and they said it was covered, just to get my doctor to send a script. Hope it's that easy, I go Friday to see my doc. I'm gonna demand it! May as well try it and see if it helps.
Darryl 44 diag 24
 
B

BleedOrange1968

New member
I want to try it and see if it helps me. I have f508 and 3272-26a>g and it's a splicing mutation class I or IV. It's known usually as having mild to moderate CF. I called my ins.(Cigna) and they said it was covered, just to get my doctor to send a script. Hope it's that easy, I go Friday to see my doc. I'm gonna demand it! May as well try it and see if it helps.
Darryl 44 diag 24
 
M

Mommafirst

Guest
I think there are a few that have started it recently, I don't know if they are seeing results. PLEASE let us know how it goes.....I *think* my daughter's second mutation is either a class 3 or 4. I'm hoping this has a wider success level than they had thought.
 
M

Mommafirst

Guest
I think there are a few that have started it recently, I don't know if they are seeing results. PLEASE let us know how it goes.....I *think* my daughter's second mutation is either a class 3 or 4. I'm hoping this has a wider success level than they had thought.
 
R

rmotion

New member
Any one know of double D508's taking it? Either off lable or during the trial.
When looking at the research it shows a slight activity of 5-8% with double DF508, not enough to get a new drug through but could help us out?
 
R

rmotion

New member
Any one know of double D508's taking it? Either off lable or during the trial.
When looking at the research it shows a slight activity of 5-8% with double DF508, not enough to get a new drug through but could help us out?
 
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