To those on kalydeco---Lauren (your thoughts, please)

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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i><i>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></i> Easy - you prevent one or two hospitalizations a year, and the med is paid for. Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med. The pharmacoeconomics are pretty clear to the insurance companies.</end quote> Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.</end quote>
<img src="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-ash4/221841_10150594034900080_783995079_18631524_134552_n.jpg" alt="" width="520" height="338" />
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kristen</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i><i>. Out of curiosity, how ARE people going to get/are getting Kaly from their insurance? If you do, you can argue with my insurance any day <img alt="" /></end quote></i> Easy - you prevent one or two hospitalizations a year, and the med is paid for. Lauren said herself - she was in the hospital every 8 weeks and now it's much less. Insurance company saves LOTS of money by allowing her to take the med. The pharmacoeconomics are pretty clear to the insurance companies.</end quote> Does it really cost $100,000 + for one hospital stay? I saw someone say that on here and I was shocked, so I started googling, and most of the info I found said it's more like $20,000 for the average hospital stay for someone with CF, but a lot of the info was outdated. I haven't been in the hospital in 23 years, so I have no idea how much it costs.</end quote>
<img src="https://fbcdn-sphotos-a.akamaihd.net/hphotos-ak-ash4/221841_10150594034900080_783995079_18631524_134552_n.jpg" alt="" width="520" height="338" />
 
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DrRoe

Guest
<span style="font-family: times new roman,times;">Kristen,
My son has been in twice since March and his stays have averaged about $65,000 per week. Of course, the cost will vary from city to city and hospital to hospital but the figure you've found is definitely on the very low side. He started on Kalydeco about a week after it was approved, he claims he doesn't see a difference but I do (assuming its not wishful thinking, his color is better and he seems to have more energy. Now if we could just get an antibiotic that would help knock out his mycobacterium abscessus.
<span style="font-family: times new roman,times;">
 
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DrRoe

Guest
<span style="font-family: times new roman,times;">Kristen,
My son has been in twice since March and his stays have averaged about $65,000 per week. Of course, the cost will vary from city to city and hospital to hospital but the figure you've found is definitely on the very low side. He started on Kalydeco about a week after it was approved, he claims he doesn't see a difference but I do (assuming its not wishful thinking, his color is better and he seems to have more energy. Now if we could just get an antibiotic that would help knock out his mycobacterium abscessus.
<span style="font-family: times new roman,times;">
 
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mnmatthews24

New member
I've been taking Kalydeco since Feb 15th and on the 4th day I noticed a big difference. I was able to go 12 hours between treatments, and typically I have to do one every 4 hours. However, that only last a few days and now I feel like I am back to the way it was prior to the Kalydeco. I am so afraid it isn't going to work for me.... I was hoping someone who had taken (or is taking) it could give me some hope. Did it take anyone else a significant amount of time to see gains? The only thing I think I am gaining is weight so far, which was never an issue for me in the first place! I am trying to stay positive, and continue to do my usual routine and workout daily, but I'd love to hear from those who can give me more info on their experiences on the drug. Thank you guys!
 
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mnmatthews24

New member
I've been taking Kalydeco since Feb 15th and on the 4th day I noticed a big difference. I was able to go 12 hours between treatments, and typically I have to do one every 4 hours. However, that only last a few days and now I feel like I am back to the way it was prior to the Kalydeco. I am so afraid it isn't going to work for me.... I was hoping someone who had taken (or is taking) it could give me some hope. Did it take anyone else a significant amount of time to see gains? The only thing I think I am gaining is weight so far, which was never an issue for me in the first place! I am trying to stay positive, and continue to do my usual routine and workout daily, but I'd love to hear from those who can give me more info on their experiences on the drug. Thank you guys!
 
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Cherylwithone

Guest
<span style="font-size: small;">Lauren, Do you think they will put your son on that drug??? I was wondering since he has one of the mutations that Malora has. I wonder if that drug would work also on it. I know it was designed for just the other mutation. I like to think positive and have hope.
 
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Cherylwithone

Guest
<span style="font-size: small;">Lauren, Do you think they will put your son on that drug??? I was wondering since he has one of the mutations that Malora has. I wonder if that drug would work also on it. I know it was designed for just the other mutation. I like to think positive and have hope.
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cherylwithone</b></i> <span style="font-size: small;">Lauren, Do you think they will put your son on that drug??? I was wondering since he has one of the mutations that Malora has. I wonder if that drug would work also on it. I know it was designed for just the other mutation. I like to think positive and have hope.</u></end quote>
<span style="font-size: small;">The answer to this question is on the first page.
 
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Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Cherylwithone</b></i> <span style="font-size: small;">Lauren, Do you think they will put your son on that drug??? I was wondering since he has one of the mutations that Malora has. I wonder if that drug would work also on it. I know it was designed for just the other mutation. I like to think positive and have hope.</u></end quote>
<span style="font-size: small;">The answer to this question is on the first page.
 
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kimmiesmom

Guest
My daughter (9 yr) has been on Kalydeco since last Thursday. She is typically very healthy, so we have not seen a huge difference. She mostly cultures normal flora with a culture of pseud every few years. She is prone to sinusitis, so it will be interesting to see if that continues. She has never had a hospital stay and we pray that this drug gives her the opportunity to never have one. She carries a Delta F508 and G551D.
 
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kimmiesmom

Guest
My daughter (9 yr) has been on Kalydeco since last Thursday. She is typically very healthy, so we have not seen a huge difference. She mostly cultures normal flora with a culture of pseud every few years. She is prone to sinusitis, so it will be interesting to see if that continues. She has never had a hospital stay and we pray that this drug gives her the opportunity to never have one. She carries a Delta F508 and G551D.
 
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cfsucks

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> For the Deltas--our CF education night is coming up at the end of March with updates to be given on the 770/809. (we already know the 661 trial has started recruiting) Does everyone have an education day/event at their center? If so, I'm sure they will be having updates for you as well. I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.</end quote>

thanks... please post the info when you get back!
 
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cfsucks

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> For the Deltas--our CF education night is coming up at the end of March with updates to be given on the 770/809. (we already know the 661 trial has started recruiting) Does everyone have an education day/event at their center? If so, I'm sure they will be having updates for you as well. I will post any info I get from there when I return. We all know this info isn't posted on the CFF website.</end quote>

thanks... please post the info when you get back!
 
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semperfiohana

Guest
i have noticed in the last week that my nose seems more gunked up than usual. i don't know if it's the kalydeco moving out crap outta my sinus' or the pollen count is higher. either way it's annoying. i used to be on allegra d until the generic quit being made and provided through my insurance. now i buy regular allegra over the counter, so it could be pollen. did anyone else notice anything with their sinus'?
 
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semperfiohana

Guest
i have noticed in the last week that my nose seems more gunked up than usual. i don't know if it's the kalydeco moving out crap outta my sinus' or the pollen count is higher. either way it's annoying. i used to be on allegra d until the generic quit being made and provided through my insurance. now i buy regular allegra over the counter, so it could be pollen. did anyone else notice anything with their sinus'?
 
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