Kalydeco non G551D users
- Thread starter JENNYC
- Start date
I am so sorry, my brain is failing me at the moment LOL I'm sure we've talked before but I can't remember no matter how hard I try. I hope you don't think I'm rude, would you mind refreshing my poor memory 
I just posted an "Abby update" in this section if you don't mind looking, hate to repost and make those read it twice who didn't want too. But she is doing really really well. I am so pleased!! Are you on Kaly?
I just posted an "Abby update" in this section if you don't mind looking, hate to repost and make those read it twice who didn't want too. But she is doing really really well. I am so pleased!! Are you on Kaly?No, I haven't really posted here. I just read. I read most of your updates, it just seemed rude to not ask how your daughter is. Lol My daughter also goes to Texas Childrens. We haven't tried Kaly yet, but my daughter also has DF 508 and if you are seeing positive results, then we might ask about it. I'm sorry, but I mimicked your signature for more info about me in case anyone was curious. It's good to know that this drug is having a positive effect for your daughter. I will see what it takes to see how it will affect our Abby. Thanks.
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marcijo
Guest
I'm still on it. I am DF508 and R117H. I was on it for 5 months off-label and insurance paid for it. PFT's xrays, sweat chloride tests all improved. Sweat chloride test went from an 81 to 36 (totally normal!). 2 weeks ago I got a letter from my insurance company denying me - I was so upset, but prepared to fight. My doctor did a peer to peer call with the insurance company and they approved it again!! I am doing fantastic on it. Trials are starting on my mutation (r117H) now so I am hoping I won't be off label for too much longer!
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marcijo
Guest
I have Premera. My doctor did a peer to peer call with an insurance company doctor - I am not sure what he told them-but I am assuming they went over my sweat test results, my PFT increase, and my x-ray? I will find out at my next appt in November.
I think I posted this on the wrong forum earlier.
Hi I just joined this because I saw marcjo had a the same issue as me. I have been on Kalydeco for 8 months and the company I work for changed insurance companies (from Oxford to Cigna) and Cigna will not approve the Kalydeco for me because I don't have G551D. My doctor and I put an appeal in which was then denied and then the final stage is the peer to peer review which took place last night between my doc and Cigna's Medical Director. I saw this post about the peer to peer review getting approved so I thought I would. However, I was denied eventho my doctor said the medical director was knowledgeable about CF and was going to approve it. I am very very upset (pretty much flipping out) and I will not stop until this is approved. Has this happened to anyone else and what else can I do to get this approved? Does anyone know what was the procedure after the Medical Director approved it, is their someone higher than that? I am not going to stop calling Cigna until I get an answer on this.
Anyway a little history on me, I was diagnosed with CF at 16, I am now 26, my mutations are R347P and L1065P (both very rare). Does anyone else have these mutations?? R347P is class 4 gating mutation and I googled L1065P and only found one case of it in Southern Italy and the patient had mild CF. I am mild CF and pancreatic sufficient. My pfts range from 75% - 81% for the past 3 years. I run 4-5 times a week and work a full time job, I try not to let CF control my life.
After being on Kalydeco I have improved my lung function slightly, I wake up in the morning with no gross thick dark mucus to cough up, and my sweat chloride went from 95.9 to 85 (still not normal, but this was after only 2 months on it, I haven't redone it). But while being on Kalydeco I am able to live a better qualtiy of life and do my vest less and I am currently on no other meds. I definitely see an improvement and have the documents to prove it to the insurance company. Please any advice/feedback would be greatly appreciated!
Thanks!
Hi I just joined this because I saw marcjo had a the same issue as me. I have been on Kalydeco for 8 months and the company I work for changed insurance companies (from Oxford to Cigna) and Cigna will not approve the Kalydeco for me because I don't have G551D. My doctor and I put an appeal in which was then denied and then the final stage is the peer to peer review which took place last night between my doc and Cigna's Medical Director. I saw this post about the peer to peer review getting approved so I thought I would. However, I was denied eventho my doctor said the medical director was knowledgeable about CF and was going to approve it. I am very very upset (pretty much flipping out) and I will not stop until this is approved. Has this happened to anyone else and what else can I do to get this approved? Does anyone know what was the procedure after the Medical Director approved it, is their someone higher than that? I am not going to stop calling Cigna until I get an answer on this.
Anyway a little history on me, I was diagnosed with CF at 16, I am now 26, my mutations are R347P and L1065P (both very rare). Does anyone else have these mutations?? R347P is class 4 gating mutation and I googled L1065P and only found one case of it in Southern Italy and the patient had mild CF. I am mild CF and pancreatic sufficient. My pfts range from 75% - 81% for the past 3 years. I run 4-5 times a week and work a full time job, I try not to let CF control my life.
After being on Kalydeco I have improved my lung function slightly, I wake up in the morning with no gross thick dark mucus to cough up, and my sweat chloride went from 95.9 to 85 (still not normal, but this was after only 2 months on it, I haven't redone it). But while being on Kalydeco I am able to live a better qualtiy of life and do my vest less and I am currently on no other meds. I definitely see an improvement and have the documents to prove it to the insurance company. Please any advice/feedback would be greatly appreciated!
Thanks!
Hi NatalieB
I also have a Class IV mutation and am also trying to get kalydeco off-label.
I have a post on it at
http://forum.cysticfibrosis.com/thr...-for-Kalydeco-off-label?p=1005226#post1005226
I also have a couple of medical articles supporting the use of kalydeco for Class IV mutations. I am happy to email them to you if you like.
I also have a Class IV mutation and am also trying to get kalydeco off-label.
I have a post on it at
http://forum.cysticfibrosis.com/thr...-for-Kalydeco-off-label?p=1005226#post1005226
I also have a couple of medical articles supporting the use of kalydeco for Class IV mutations. I am happy to email them to you if you like.