Off Label Kalydeco-My follow up Appt.

M

marcijo

Guest
I had my 4 week follow up appt for Kalydeco. I am DF508 and R117H and am on it off-label. I asked my doctor to prescribe it, and insurance covered it.
I went in today to have repeat PFTs and a repeat sweat test done. My FEV1 was at 83% a month ago, today it was at 87%. I was hoping it would be higher-but the fact that it increased 4% I am happy with!
My last sweat test (before I started Kalydeco) was 81. Anything over 60 is considered CF, 40-60 is borderline, and under 40 is normal.
My sweat test today was 36. Which means my body is working normally! So Kalydeco does work on R117H! I am THRILLED!
 
M

marcijo

Guest
I had my 4 week follow up appt for Kalydeco. I am DF508 and R117H and am on it off-label. I asked my doctor to prescribe it, and insurance covered it.
I went in today to have repeat PFTs and a repeat sweat test done. My FEV1 was at 83% a month ago, today it was at 87%. I was hoping it would be higher-but the fact that it increased 4% I am happy with!
My last sweat test (before I started Kalydeco) was 81. Anything over 60 is considered CF, 40-60 is borderline, and under 40 is normal.
My sweat test today was 36. Which means my body is working normally! So Kalydeco does work on R117H! I am THRILLED!
 
C

cindylou

Guest
Marci, I am SO EXCITED!!! This is the best news I've heard all day, woohoo!
 
C

cindylou

Guest
Marci, I am SO EXCITED!!! This is the best news I've heard all day, woohoo!
 
M

marcijo

Guest
Incomudrox-I am an occasional exerciser...this past week I went on a walk/run for a total of 1.75 miles....only 9 minutes of it was running though.

I definitely want to get back into running though-I think it definitely helps my lungs!
 
M

marcijo

Guest
Incomudrox-I am an occasional exerciser...this past week I went on a walk/run for a total of 1.75 miles....only 9 minutes of it was running though.

I definitely want to get back into running though-I think it definitely helps my lungs!
 
J

JENNYC

New member
Wow!! So happy for you!!! Thank you so much for sharing your experience with us!!! That is super fantastic!!
 
J

JENNYC

New member
Wow!! So happy for you!!! Thank you so much for sharing your experience with us!!! That is super fantastic!!
 
C

cfgf28

Guest
Wow fantastic results! Bf goes to the dr on maonday, def think its worth inquiring about the drug!!
 
C

cfgf28

Guest
Wow fantastic results! Bf goes to the dr on maonday, def think its worth inquiring about the drug!!
 
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