Sorry I don't mean to pry. I am just so very interested on how some of you taking it off label are doing. Whether good or bad. I know that some of you have been on it for a while now and just wondering how you are feeling. We still have not got to find out Abby's second mutation. I'm on pins and needles waiting to here that we can go get blood drawn. Today has been 2 weeks since we sent off to get approval from the CF Foundation. Thanks everyone.
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Off Label Kalydeco
- Thread starter JENNYC
- Start date
Sorry I don't mean to pry. I am just so very interested on how some of you taking it off label are doing. Whether good or bad. I know that some of you have been on it for a while now and just wondering how you are feeling. We still have not got to find out Abby's second mutation. I'm on pins and needles waiting to here that we can go get blood drawn. Today has been 2 weeks since we sent off to get approval from the CF Foundation. Thanks everyone.