BleedOrange1968
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Does anyone know if Kalydeco would work or can be tried on other mutation?
- Thread starter BleedOrange1968
- Start date
BleedOrange1968
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saveferris2009
New member
Orange, there's a lot left to be discovered about Kalydeco as a mono therapy. So far, it's only been tested in DDf508 and G551D. That's why many people are trying the drug, even if they don't have G551D. It will be exciting to see what people report after trying the med. And some insurances are paying for it. The amount of CFTR that a gene can create can be influenced by a lot of things - modifier genes, exercise, the food we eat. So Kalydeco may have different impacts on different people....
saveferris2009
New member
Orange, there's a lot left to be discovered about Kalydeco as a mono therapy. So far, it's only been tested in DDf508 and G551D. That's why many people are trying the drug, even if they don't have G551D. It will be exciting to see what people report after trying the med. And some insurances are paying for it. The amount of CFTR that a gene can create can be influenced by a lot of things - modifier genes, exercise, the food we eat. So Kalydeco may have different impacts on different people....
K
Keepercjr
Guest
I left a message for the CF nurse that I want to try it and that I'm not going to accept a "no". If they try to tell me no I have a clinic appt on Wednesday and I will make myself very clear.
K
Keepercjr
Guest
I left a message for the CF nurse that I want to try it and that I'm not going to accept a "no". If they try to tell me no I have a clinic appt on Wednesday and I will make myself very clear.
saveferris2009
New member
You go girl!
Nothing is guarenteed, of course. It's a long shot. But it's certainly worth a try.....
Nothing is guarenteed, of course. It's a long shot. But it's certainly worth a try.....
saveferris2009
New member
You go girl!
Nothing is guarenteed, of course. It's a long shot. But it's certainly worth a try.....
Nothing is guarenteed, of course. It's a long shot. But it's certainly worth a try.....
BleedOrange1968
New member
I am f508 and 3272-26a>g. How do I know if mine is gating and what class I'm in??
Darryl 44 dx 24
Darryl 44 dx 24
BleedOrange1968
New member
I am f508 and 3272-26a>g. How do I know if mine is gating and what class I'm in??
Darryl 44 dx 24
Darryl 44 dx 24
saveferris2009
New member
http://lmgtfy.com/?q=3272-26a%3Eg
looks like a splicing mutation
looks like a splicing mutation
saveferris2009
New member
http://lmgtfy.com/?q=3272-26a%3Eg
looks like a splicing mutation
looks like a splicing mutation
Ask your doctor to write you a prescription for it and test it out. Your mutation is probably too rare for them to run a clinical trial on and if your doctor writes you a prescription then your insurance company will probably pay for it. Some other people on this site have been doing that exact same thing with some pretty positive results!
Ask your doctor to write you a prescription for it and test it out. Your mutation is probably too rare for them to run a clinical trial on and if your doctor writes you a prescription then your insurance company will probably pay for it. Some other people on this site have been doing that exact same thing with some pretty positive results!
J
jessykt
Guest
I am on Kalydeco and have DeltaF508 and G551D. I was told that Kalydeco works MILDLY with other mutations, but the most success was with G551D. The reason why it's being used only for G551D is because to pass FDA regulations, it had to benefit a certain percentage of population. Now that it's been passed and may be prescribed for G551D, they can start working their way backward with other mutations.
J
jessykt
Guest
I am on Kalydeco and have DeltaF508 and G551D. I was told that Kalydeco works MILDLY with other mutations, but the most success was with G551D. The reason why it's being used only for G551D is because to pass FDA regulations, it had to benefit a certain percentage of population. Now that it's been passed and may be prescribed for G551D, they can start working their way backward with other mutations.