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View Full Version : To those on kalydeco---Lauren (your thoughts, please)



dramamama
02-25-2012, 03:53 PM
Just a quick question about when you first noticed something "different" after starting the kalydeco? It intrigues me and I was wondering if you had the same experiences. For instance, when did you start moving out old junk~

Thank you :-)

dramamama
02-25-2012, 03:53 PM
Just a quick question about when you first noticed something "different" after starting the kalydeco? It intrigues me and I was wondering if you had the same experiences. For instance, when did you start moving out old junk~

Thank you :-)

saveferris2009
02-25-2012, 07:48 PM
I would love to know as well! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good question!

saveferris2009
02-25-2012, 07:48 PM
I would love to know as well! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good question!

LouLou
02-25-2012, 08:02 PM
Increased cough started within 24 hrs. I didn't notice it the first time until I started coughing up very unusual plugs. So much so that both times I had streaking which I never do. These weren't pure blood incidents like I've had before but rather so much coughing and mucus coming out that my airways were slightly irritated. By 3 days the majority of the mucus was gone from my lungs and then I continued to cough up plugs (seed sized) exactly 1.5 hrs. after my morning dose but nothing at night. This carried on for two weeks and only the first time I started drug back in 2008. When I restarted it in 2010 I had the large volume of mucus coming out but only a few plugs in the first month spiradically. I was wiser to expect the abundant mucus so I had a cup for the train ride home as it was practically pouring out of my lungs. LOL I wouldn't plan on going to work the first 3-4 days on Kalydeco. I didn't feel worse persay but it is one of those drugs where one might feel worse before feeling better. It was speculated that the plugs I'd coughed out in 2008 had taken years (maybe decades) to form (they were black). I hope this helps. Please share with us what you or your friend's experience has been the first few days on Kaly.

LouLou
02-25-2012, 08:02 PM
Increased cough started within 24 hrs. I didn't notice it the first time until I started coughing up very unusual plugs. So much so that both times I had streaking which I never do. These weren't pure blood incidents like I've had before but rather so much coughing and mucus coming out that my airways were slightly irritated. By 3 days the majority of the mucus was gone from my lungs and then I continued to cough up plugs (seed sized) exactly 1.5 hrs. after my morning dose but nothing at night. This carried on for two weeks and only the first time I started drug back in 2008. When I restarted it in 2010 I had the large volume of mucus coming out but only a few plugs in the first month spiradically. I was wiser to expect the abundant mucus so I had a cup for the train ride home as it was practically pouring out of my lungs. LOL I wouldn't plan on going to work the first 3-4 days on Kalydeco. I didn't feel worse persay but it is one of those drugs where one might feel worse before feeling better. It was speculated that the plugs I'd coughed out in 2008 had taken years (maybe decades) to form (they were black). I hope this helps. Please share with us what you or your friend's experience has been the first few days on Kaly.

kgfrompa
02-25-2012, 08:20 PM
<strong>Wow this intresting I am waiting for what clinical trials they will pick for the next study on Kalydeco I spoke with my Doctor this week.How I would love to cough up all the junk on my lungs Thank you for sharing.</strong>

kgfrompa
02-25-2012, 08:20 PM
<strong>Wow this intresting I am waiting for what clinical trials they will pick for the next study on Kalydeco I spoke with my Doctor this week.How I would love to cough up all the junk on my lungs Thank you for sharing.</strong>

saveferris2009
02-25-2012, 08:26 PM
Lauren could you remind me of the changes in PFTs that you saw each time? Sorry I know you probably mentioned it somewhere here, but it's tough to search on this site <img src="i/expressions/face-icon-small-sad.gif" border="0">

saveferris2009
02-25-2012, 08:26 PM
Lauren could you remind me of the changes in PFTs that you saw each time? Sorry I know you probably mentioned it somewhere here, but it's tough to search on this site <img src="i/expressions/face-icon-small-sad.gif" border="0">

dramamama
02-25-2012, 09:48 PM
<span style="font-size: small;">wow! Within 24 hours. That is amazing! Did you notice a more "wet" feeling or more "moisture" in your nose and airways?
<span style="font-size: small;">I have a friend who is still coughing stuff out (although he is sicker than you with pfts in the 20s) and he still feels pretty horrible still after two weeks of the drug. But, I have heard that it can last for several weeks... I know of one man at my clinic who was on the transplant list and is now in the high 60's. AMAZING.
Thank you so much for sharing this info! Hopefully, we will hear a lot more of these stories. So happy for all of you G551Ds and hopefully more mutations to come very soon!

dramamama
02-25-2012, 09:48 PM
<span style="font-size: small;">wow! Within 24 hours. That is amazing! Did you notice a more "wet" feeling or more "moisture" in your nose and airways?
<span style="font-size: small;">I have a friend who is still coughing stuff out (although he is sicker than you with pfts in the 20s) and he still feels pretty horrible still after two weeks of the drug. But, I have heard that it can last for several weeks... I know of one man at my clinic who was on the transplant list and is now in the high 60's. AMAZING.
Thank you so much for sharing this info! Hopefully, we will hear a lot more of these stories. So happy for all of you G551Ds and hopefully more mutations to come very soon!

LouLou
02-25-2012, 09:54 PM
The first trial I was on drug for 28 days. I went from a normal baseline of 1.8 to an FEV1 of 2.1L a number I hadn't seen since 1999. That's a 14.3% increase. Then I was off drug and lost all increase within a week and fell ill :-( That was July 2008. Then in Oct. 2009 I started Ph. 3 where I landed PLACEBO. I had a bad year. In Oct. 2010 I started drug through open label. I did not see a big jump in my FEV1 though I have maintained better health without the need for IV antibiotics as often. I was averaging every 8 weeks but now only need them eveyr 6-8 months! My FEV1 is still in the 1.8L baseline range and I no longer workout like a maniac like I did back in 2008 so if we were really comparing apples to apples I woud probably have 10% higher. Conidering I did more than 2 dozen rounds of IVs from 2008-2012 that's pretty awesome. I have more energy and am a healthier weight. I no longer have hemoptysis and the list could go on but I think I've answered your question.

LouLou
02-25-2012, 09:54 PM
The first trial I was on drug for 28 days. I went from a normal baseline of 1.8 to an FEV1 of 2.1L a number I hadn't seen since 1999. That's a 14.3% increase. Then I was off drug and lost all increase within a week and fell ill :-( That was July 2008. Then in Oct. 2009 I started Ph. 3 where I landed PLACEBO. I had a bad year. In Oct. 2010 I started drug through open label. I did not see a big jump in my FEV1 though I have maintained better health without the need for IV antibiotics as often. I was averaging every 8 weeks but now only need them eveyr 6-8 months! My FEV1 is still in the 1.8L baseline range and I no longer workout like a maniac like I did back in 2008 so if we were really comparing apples to apples I woud probably have 10% higher. Conidering I did more than 2 dozen rounds of IVs from 2008-2012 that's pretty awesome. I have more energy and am a healthier weight. I no longer have hemoptysis and the list could go on but I think I've answered your question.

Incomudrox
02-25-2012, 09:55 PM
Interesting.... Lauren was there a consistency change in the mucus? More liquid like? Color texture etc cetra?

Incomudrox
02-25-2012, 09:55 PM
Interesting.... Lauren was there a consistency change in the mucus? More liquid like? Color texture etc cetra?

LouLou
02-25-2012, 10:04 PM
I did not notice a wet feeling just the need to clear mucus that came out easily. I didn't chalk it up to much as my cough can change from one day to the next a lot. Each day got progressively better and the proof was in the pft numbers. It was a slight change each day that added up over time to a drastic change if that makes sense.

Now I still have the need for inhaled antibiotics and have come to the conclusion that I will be disabled for the rest of my life (as long as I have these lungs) because of bronchiactisis (lung damage). I think for those that start Kaly when they dont have much damage noticeable on CT scan they will be effected the greatest. For me it has slowed the progression I'm sure but not halted it as even those w/o cf who just have bronchiactisis have progression. In fact if you think about it even those w/o lung disease have decreasing lung function expectations since age alone drops the predicted numbers.

Certainly though I have had to alter my hopes and expectations. The results were not as marvelous as they were even just in 2008 but I have to remember I am lucky to be alive and have this option even if I had to do a year of placebo which was detrimental to my health.

On that note, if anyone ever works on trying to change the FDA's requirement for CFers to NOT have to do placebo in studies I would back you and go to DC for such a effort!

LouLou
02-25-2012, 10:04 PM
I did not notice a wet feeling just the need to clear mucus that came out easily. I didn't chalk it up to much as my cough can change from one day to the next a lot. Each day got progressively better and the proof was in the pft numbers. It was a slight change each day that added up over time to a drastic change if that makes sense.

Now I still have the need for inhaled antibiotics and have come to the conclusion that I will be disabled for the rest of my life (as long as I have these lungs) because of bronchiactisis (lung damage). I think for those that start Kaly when they dont have much damage noticeable on CT scan they will be effected the greatest. For me it has slowed the progression I'm sure but not halted it as even those w/o cf who just have bronchiactisis have progression. In fact if you think about it even those w/o lung disease have decreasing lung function expectations since age alone drops the predicted numbers.

Certainly though I have had to alter my hopes and expectations. The results were not as marvelous as they were even just in 2008 but I have to remember I am lucky to be alive and have this option even if I had to do a year of placebo which was detrimental to my health.

On that note, if anyone ever works on trying to change the FDA's requirement for CFers to NOT have to do placebo in studies I would back you and go to DC for such a effort!

LouLou
02-25-2012, 10:07 PM
Yes the consistancy changed to a buggery, stretchy consistancy and white. (back in 2008) I had never seeen stretchy stuff come out of my lungs. It has been bulky, blobs for as long as I can remember. Unfortunately, I have not seen flora changes at any point. I still culture both PA and MRSA and my consistancy is still the same as my usual cf mucus now but I have few days a year where I see khaki color which was becoming increasing frequent prior to 2010.

You all have great questions!

LouLou
02-25-2012, 10:07 PM
Yes the consistancy changed to a buggery, stretchy consistancy and white. (back in 2008) I had never seeen stretchy stuff come out of my lungs. It has been bulky, blobs for as long as I can remember. Unfortunately, I have not seen flora changes at any point. I still culture both PA and MRSA and my consistancy is still the same as my usual cf mucus now but I have few days a year where I see khaki color which was becoming increasing frequent prior to 2010.

You all have great questions!

LouLou
02-25-2012, 10:11 PM
When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has the feeling the most. I likened the feeling to "30 years of cf flooding back in" It was one of the worst feeligns I have ever had and definitely link it to increased anxiety in my processing of the disease after that point. The only good thing was that it was not painful. Nonetheless, I think people should stay on the drug or ween off...not go off cold turkey.

LouLou
02-25-2012, 10:11 PM
When I stopped Kaly the one time that I did (at the end of Ph.2B in 2008) I had a flooding feeling...very wet - felt like hemopytsis. I wonder if this is what your friend is referring to Mandy? I wonder if his CFTR value isn't holding steady on the dose. He should note what time of day he has the feeling the most. I likened the feeling to "30 years of cf flooding back in" It was one of the worst feeligns I have ever had and definitely link it to increased anxiety in my processing of the disease after that point. The only good thing was that it was not painful. Nonetheless, I think people should stay on the drug or ween off...not go off cold turkey.

saveferris2009
02-25-2012, 11:55 PM
Lauren is your son taking the drug?

saveferris2009
02-25-2012, 11:55 PM
Lauren is your son taking the drug?

MCGrad2006
02-26-2012, 12:01 AM
There was a GREAT article in the Boston Globe a few weeks ago about a family in MA. The two daughters each were in the trial. Not knowing, one got placebo and one got drug. The one that got drug noticed a difference IMMEDIATELY! Amy, How do I post the link??

MCGrad2006
02-26-2012, 12:01 AM
There was a GREAT article in the Boston Globe a few weeks ago about a family in MA. The two daughters each were in the trial. Not knowing, one got placebo and one got drug. The one that got drug noticed a difference IMMEDIATELY! Amy, How do I post the link??

MCGrad2006
02-26-2012, 12:02 AM
<a href="http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways">http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways</a> Here is an attempt at posting...let me know if it works. I have been meaning to post a topic with the link, so I am going to do that too!

MCGrad2006
02-26-2012, 12:02 AM
<a href="http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways">http://articles.boston.com/2012-02-09/news/31042758_1_cystic-fibrosis-foundation-robert-beall-lungs-and-airways</a> Here is an attempt at posting...let me know if it works. I have been meaning to post a topic with the link, so I am going to do that too!

semperfiohana
02-26-2012, 12:36 AM
lauren, i was just wondering i have read that one of the side effects can be sore throat. did you or anyone you know that was on the drug have a sore throat. i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. i have noticed less coughing i think . although i never really realize how much i cough because i'm so used to. i've even asked my husband and he can't tell me cause he's so used to. i've noticed a little more throat clearing to. i go to the doctor in april and i'm hoping for higher pfts! i may pee my pants if my pfts are higher!

semperfiohana
02-26-2012, 12:36 AM
lauren, i was just wondering i have read that one of the side effects can be sore throat. did you or anyone you know that was on the drug have a sore throat. i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. i have noticed less coughing i think . although i never really realize how much i cough because i'm so used to. i've even asked my husband and he can't tell me cause he's so used to. i've noticed a little more throat clearing to. i go to the doctor in april and i'm hoping for higher pfts! i may pee my pants if my pfts are higher!

LouLou
02-26-2012, 01:04 AM
I did not experience sore throat. Isaac is not taking the drug yet. He goes to clinic next week though and is incidently scheduled for his first pfts which was a prerequisite for me to be willing to sign him up. Since he has regular sweat chloride result at 3 months and again at 2 years that won't be in indicator if it's doing anything for him. I would like to know that it is offering him some benefit though will talk to his doctor about it next week. Last I spoke to her about it she was a big proponent of anyone with G551D getting on it ASAP even if it was off label use. As is the case with Isaac since he is only 4 and it's approved for over 6. I have a bag of M&Ms that he is working on learning to swallow since he'll need to be able to swallow the pill. We made the choice not to sign him up for the age 2-5 study so that he could get the drug sooner in the case that that study carries on for a long time (doubtful). His doc felt strongly that she'd have little issue getting coverage for him on it off label. We'll see what she is saying now that she's probably crossed the bridge with other patients. I'm a little worried what our corporation is going to think of having two people in one family on 300K annual medications but that's another thread for another day.

LouLou
02-26-2012, 01:04 AM
I did not experience sore throat. Isaac is not taking the drug yet. He goes to clinic next week though and is incidently scheduled for his first pfts which was a prerequisite for me to be willing to sign him up. Since he has regular sweat chloride result at 3 months and again at 2 years that won't be in indicator if it's doing anything for him. I would like to know that it is offering him some benefit though will talk to his doctor about it next week. Last I spoke to her about it she was a big proponent of anyone with G551D getting on it ASAP even if it was off label use. As is the case with Isaac since he is only 4 and it's approved for over 6. I have a bag of M&Ms that he is working on learning to swallow since he'll need to be able to swallow the pill. We made the choice not to sign him up for the age 2-5 study so that he could get the drug sooner in the case that that study carries on for a long time (doubtful). His doc felt strongly that she'd have little issue getting coverage for him on it off label. We'll see what she is saying now that she's probably crossed the bridge with other patients. I'm a little worried what our corporation is going to think of having two people in one family on 300K annual medications but that's another thread for another day.

saveferris2009
02-26-2012, 01:51 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. </end quote>

Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?

saveferris2009
02-26-2012, 01:51 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> i have noticed since starting the drug that my throat is sore. i'm willing to take the sore throat though because of the benefit of the drug. </end quote>

Sorry to hijack your thread, Ms. Mandy. Just so curious about all of this stuff:
Candice out of curiosity did you cough up different color/texture mucus when you first started the drug? Do you feel more energetic?

Anomie
02-26-2012, 01:51 AM
What bugs were you culturing before and after taking the drug? Have you had a ct scan recently? Has any damage been shown to be reversible? Do you know what your sweat tests were before and after taking kalydeco? Thanks!

Anomie
02-26-2012, 01:51 AM
What bugs were you culturing before and after taking the drug? Have you had a ct scan recently? Has any damage been shown to be reversible? Do you know what your sweat tests were before and after taking kalydeco? Thanks!

Anomie
02-26-2012, 01:59 AM
I see now you've already answered all of my questions in previous posts. I'm concerned about how much the vertex drugs will help my daughter since she already has PA and bronchiectasis. Oh well, anything is better than nothing.

Anomie
02-26-2012, 01:59 AM
I see now you've already answered all of my questions in previous posts. I'm concerned about how much the vertex drugs will help my daughter since she already has PA and bronchiectasis. Oh well, anything is better than nothing.

cfsucks
02-26-2012, 02:10 AM
how come more people aren't chiming in on the drug? are there so few people on it?
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.

cfsucks
02-26-2012, 02:10 AM
how come more people aren't chiming in on the drug? are there so few people on it?
the changes you experienced sound nothing short of amazing! i really hope these other drugs work for df508 as well as kalydeco did for gating mutations!
im also curious if you experienced any changes other than in your lungs- i know it'd be hard to validate but things like having to take less enzymes? or less intestinal issues if you have any.

Anomie
02-26-2012, 02:12 AM
Is your PA mucoid or non-mucoid? Did you have to stop doing treatments while you were on placebo?

Anomie
02-26-2012, 02:12 AM
Is your PA mucoid or non-mucoid? Did you have to stop doing treatments while you were on placebo?

semperfiohana
02-26-2012, 02:23 AM
I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.

semperfiohana
02-26-2012, 02:23 AM
I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.

cfsucks
02-26-2012, 02:45 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.</end quote>

how long have you been on it for now?

cfsucks
02-26-2012, 02:45 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>semperfiohana</b></i> I am actually one of those bad cfer's that doesn't spit out what they cough up. So I can't honestly say what color or what texture the mucus is. Do I feel like I have more energy. I think so. I was so excited when the drug came that I had my son take a picture with it in my mouth. I'm actually excited to go to the doctor to see where my pft's lie.</end quote>

how long have you been on it for now?

semperfiohana
02-26-2012, 03:00 AM
i have been on it since feb 17.

semperfiohana
02-26-2012, 03:00 AM
i have been on it since feb 17.

dasjsmum
02-26-2012, 03:20 AM
My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe.

He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010

I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">

dasjsmum
02-26-2012, 03:20 AM
My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe.

He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010

I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src="i/expressions/face-icon-small-sad.gif" border="0">

musclemania70
02-26-2012, 10:37 AM
I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating.

For what its worth, we are all so appreciative.

musclemania70
02-26-2012, 10:37 AM
I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating.

For what its worth, we are all so appreciative.

saveferris2009
02-26-2012, 12:16 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating. For what its worth, we are all so appreciative.</end quote>

Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!

saveferris2009
02-26-2012, 12:16 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I just wanted to say thanks a lot for what it means to all the cf people out there that you participated and didn't quit the trial when you started feeling bad again. It must have been very hard and very frustrating. For what its worth, we are all so appreciative.</end quote>

Yes, I agree. Thanks again, Lauren. You are a true hero to those with CF and a great example to us all. Thank you!

MCGrad2006
02-26-2012, 12:37 PM
I agree! Thank you so much for doing what you do! It really amazes me that you have all put your lives on hold to try out new things. I love reading about all of this! Thanks again!

MCGrad2006
02-26-2012, 12:37 PM
I agree! Thank you so much for doing what you do! It really amazes me that you have all put your lives on hold to try out new things. I love reading about all of this! Thanks again!

dramamama
02-26-2012, 05:04 PM
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Lauren-
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy

dramamama
02-26-2012, 05:04 PM
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Lauren-
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">My heart aches for you that you had to go through loss of the drug and the loss of the better health you experienced while on the drug. I don't have the right words to tell you how much your sacrifice means to me. Thank you for doing the trial and thank you for your honesty in reporting what you experienced.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I'm hopeful that you will benefit from the 661, too, when that is finally released years from now.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">hugs.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">mandy

dramamama
02-26-2012, 05:21 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe. He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010 I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src=""></end quote>

<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">

dramamama
02-26-2012, 05:21 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> My son has been on it for the last two years the same as Lauren (he is 32). He noticed a difference staright away too, with in a week. He would have to fill you in with all the extra stuff Lauren has, but I know that his sweat no longer tasted salty, he got back to playing sport, his fev rose for around 60% to 85% in two weeks and he put on quite a bit of weight in two weeks also. His fev1 is now around 90% I believe. He does use Pulmozyme but that is the only thing he uses. He hasnt been sick at all since staring 770 and I'm guessing he was fortunate enough to have less lung damage than Lauren experienced between 2008 and 2010 I am so incredibly disapponted for you Lauren....sure, it's great that you're doing better than you would have been, and good on you for looking tot he positive, but still it sucks <img src=""></end quote>

<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Would your son ever consider coming on here to answer this question? I have heard so many different views of what the first noticable difference has been. Some say increased cough, some say they start feeling pretty sick (presumably from moving so much old stuff), some say throat irritation or clearing...
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">I am really interested in the whole process... Also, has your other child started it on it, yet? Or is it not approved there yet?
<span style="font-family: 'comic sans ms', sans-serif; font-size: small;">Thank you so much <img src="i/expressions/face-icon-small-smile.gif" border="0">

LouLou
02-27-2012, 01:00 AM
Your messages really touched me. I want to thank you for your appreciation. It shows me that you understand completely what a lot of work and a sacrifice for me (aka mom) and my family to more than "allow" but to "support" me to leave for a day and a half every 8 wks the last few years was. The placebo was a big blow emotionally and physically. I didn't realize I still had residual feelings/issues with it until your thankful messages stirred up a whole host of emotions in me. I feel such joy that we have this medication but it's been a long road. Strangely the worst part for me wasn't when I got placebo but before that when I had literally transformed in the 28 days on drug and to know I wouldn't get it again for who knew how long. I promise one of these days, I'llwrite more. And of course, I feel the guilt of beingpart of the 4%of cfers that this actually works for. I hope it's just a matter of time for 809or 661 to come out and help the majority of people with cf.

LouLou
02-27-2012, 01:00 AM
Your messages really touched me. I want to thank you for your appreciation. It shows me that you understand completely what a lot of work and a sacrifice for me (aka mom) and my family to more than "allow" but to "support" me to leave for a day and a half every 8 wks the last few years was. The placebo was a big blow emotionally and physically. I didn't realize I still had residual feelings/issues with it until your thankful messages stirred up a whole host of emotions in me. I feel such joy that we have this medication but it's been a long road. Strangely the worst part for me wasn't when I got placebo but before that when I had literally transformed in the 28 days on drug and to know I wouldn't get it again for who knew how long. I promise one of these days, I'llwrite more. And of course, I feel the guilt of beingpart of the 4%of cfers that this actually works for. I hope it's just a matter of time for 809or 661 to come out and help the majority of people with cf.

SIcklyhatED
02-27-2012, 02:00 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote>
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
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 src="i/expressions/face-icon-small-smile.gif" border="0">

SIcklyhatED
02-27-2012, 02:00 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote>
Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo.
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 src="i/expressions/face-icon-small-smile.gif" border="0">

Incomudrox
02-27-2012, 10:12 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote> Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo. 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 src=""></end quote>

More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...

Incomudrox
02-27-2012, 10:12 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SIcklyhatED</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfsucks</b></i> how come more people aren't chiming in on the drug? are there so few people on it?</end quote> Probably because it's so bloody expensive. I was just talking with my mother about this and asked her how in the world anyone was supossed to convince their insurance company to pay for it. Unfortunatly, in this case you couldn't really say, "Well, a lung transplant would be more expensive than giving me the meds I need!" Because uh, a transplant just might be "cheaper." :/ poo. 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 src=""></end quote>

More people aren't "chiming in" because there are only a handful of people that have G551D let alone people on this board that have it. You shouldnt be so surprised.
Which brings me to the second point, the people who actaully HAVE G551D should have no problems getting coverage. I'm not sure where the difficulty in this is coming in at. It's the people in here that are wanting to try it that don't have G551D that will have a difficult time and by the isurance companies policy rightly so...

Kristen
02-27-2012, 11:09 AM
Ditto everyone Lauren - thank you so much for taking the time for participating in the trial. I so, so wish that you had not gotten placebo.

And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.

Kristen
02-27-2012, 11:09 AM
Ditto everyone Lauren - thank you so much for taking the time for participating in the trial. I so, so wish that you had not gotten placebo.

And ditto Incomudrox - I have not heard of anyone with G551D who has had a difficult time getting the drug (in the US). There just aren't that many people out there who can take it.

saveferris2009
02-27-2012, 12:31 PM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>SIcklyhatED</strong></em><em>. 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></em>

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.

saveferris2009
02-27-2012, 12:31 PM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>SIcklyhatED</strong></em><em>. 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></em>

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.

semperfiohana
02-27-2012, 12:38 PM
i have tricare (military insurance) and had no problem getting it covered. covered at my standard co-pay. it took about a week from the time the pharmacy received my prescription to it getting the approval for coverage. i know i'm lucky with my insurance and i'm hoping that people don't have an issue getting it covered. i know vertex was taking your information and going through you insurance company to see if you needed any kind of finical assistance.

semperfiohana
02-27-2012, 12:38 PM
i have tricare (military insurance) and had no problem getting it covered. covered at my standard co-pay. it took about a week from the time the pharmacy received my prescription to it getting the approval for coverage. i know i'm lucky with my insurance and i'm hoping that people don't have an issue getting it covered. i know vertex was taking your information and going through you insurance company to see if you needed any kind of finical assistance.

bethylove
02-27-2012, 03:42 PM
I just sent in paperwork to get the ball rolling! I'm very excited to see what changes in my day to day life I experience. I'll chime back in once I get the actual drug. =)

bethylove
02-27-2012, 03:42 PM
I just sent in paperwork to get the ball rolling! I'm very excited to see what changes in my day to day life I experience. I'll chime back in once I get the actual drug. =)

chroma7
02-27-2012, 04:22 PM
I want to say that after reading this thread I have renewed hope my son in on vx809. we just started a trial with 809/770. they are testing dosage for the deltas (my son is a double delta508). as of today he has been taking three 809's a day. we have a 1 in 4 chance they are all placebo. 1 in 4 one is 809, 1 in 4 two are 809 and so on. since he started taking it i have noticed him coughing MUCH more than usual. I have been thinking he is getting sick and may need to end the trial and go on IV. now im thinking he may be on the drug. a week from today he starts taking the 770 (or placebo) with the 809. He is 20 btw.

my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?

chroma7
02-27-2012, 04:22 PM
I want to say that after reading this thread I have renewed hope my son in on vx809. we just started a trial with 809/770. they are testing dosage for the deltas (my son is a double delta508). as of today he has been taking three 809's a day. we have a 1 in 4 chance they are all placebo. 1 in 4 one is 809, 1 in 4 two are 809 and so on. since he started taking it i have noticed him coughing MUCH more than usual. I have been thinking he is getting sick and may need to end the trial and go on IV. now im thinking he may be on the drug. a week from today he starts taking the 770 (or placebo) with the 809. He is 20 btw.

my son is saying he is actually short of breath. im thinking from the increase in coughing up old stuff maybe. he certainly has been spiting more. did anyone notice uncomfort from the increase in coughing from the trial in the beginning?

musclemania70
02-27-2012, 04:29 PM
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.

musclemania70
02-27-2012, 04:29 PM
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.

Kristen
02-27-2012, 06:18 PM
<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.

Kristen
02-27-2012, 06:18 PM
<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.

Incomudrox
02-27-2012, 06:22 PM
<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" />

Incomudrox
02-27-2012, 06:22 PM
<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" />

DrRoe
02-27-2012, 07:31 PM
<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;">

DrRoe
02-27-2012, 07:31 PM
<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;">

Kristen
02-27-2012, 08:58 PM
WOW. Imcomudrox and DrRoe, thanks for sharing! DrRoe, I hope Kalydeco makes a big difference for your son!

Kristen
02-27-2012, 08:58 PM
WOW. Imcomudrox and DrRoe, thanks for sharing! DrRoe, I hope Kalydeco makes a big difference for your son!

mnmatthews24
02-28-2012, 08:30 AM
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!

mnmatthews24
02-28-2012, 08:30 AM
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!

Cherylwithone
02-28-2012, 08:48 AM
<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.

Cherylwithone
02-28-2012, 08:48 AM
<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.

Incomudrox
02-28-2012, 09:06 AM
<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.

Incomudrox
02-28-2012, 09:06 AM
<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.

kimmiesmom
02-28-2012, 11:12 AM
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.

kimmiesmom
02-28-2012, 11:12 AM
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.

cfsucks
02-28-2012, 11:14 AM
<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!

cfsucks
02-28-2012, 11:14 AM
<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!

musclemania70
02-28-2012, 12:35 PM
fo sho

musclemania70
02-28-2012, 12:35 PM
fo sho

semperfiohana
02-28-2012, 12:55 PM
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'?

semperfiohana
02-28-2012, 12:55 PM
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'?

Allansarmy
02-29-2012, 02:09 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>On that note, if anyone ever works on trying to change the FDA's requirement for CFers to NOT have to do placebo in studies I would back you and go to DC for such a effort!</end quote>
I didn't want to include all of your text here, just the part I wanted to respond to. So basically on this study they had you take the Kalydeco and then stop cold turkey and give you placebo. During the placebo were you allowed to take any other drugs (i.e. Pulmozyme, Tobi, Albuterol) type of drugs? - No need to respond soon, I was just curious because it sounds likea brutal trial.
I work in an ENT office and my doc that I work for also has a side research business that I occasionally help out with. Nothing as big as what you are on, but I was just curious how the coordinators thought this would be a good idea to stop cold turkey etc.

Allansarmy
02-29-2012, 02:09 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>On that note, if anyone ever works on trying to change the FDA's requirement for CFers to NOT have to do placebo in studies I would back you and go to DC for such a effort!</end quote>
I didn't want to include all of your text here, just the part I wanted to respond to. So basically on this study they had you take the Kalydeco and then stop cold turkey and give you placebo. During the placebo were you allowed to take any other drugs (i.e. Pulmozyme, Tobi, Albuterol) type of drugs? - No need to respond soon, I was just curious because it sounds likea brutal trial.
I work in an ENT office and my doc that I work for also has a side research business that I occasionally help out with. Nothing as big as what you are on, but I was just curious how the coordinators thought this would be a good idea to stop cold turkey etc.

cdale613
02-29-2012, 08:11 PM
Hi All,

I have been on Kalydeco for two weeks through the last VX-770 research effort tracking long term use for a year at UVA. I am continuing my full routine of meds for the time being.

The first change I notices were my nasal passages - within about 4 hours. They feel like I just did a sinus rinse.

Chest wise, I noticed a difference in 3 days. I feel MUCH less tight or inflamed. I don't hear crackles when I lie down to go to sleep, etc. It basically feels like I'm in the middle of a course of IVs without the nasty side effects...
My level of congestion/mucous production has lessened some, but I continue to be quite productive. However, my color has been all over the place - some days very light greenish yellow, other days gross greenish brown. I have been getting up a few plugs, though nothing black, etc.

After five days, my FEV1 was up 4%, to 84% of normal.

The biggest noticeable change so far has been in my digestive tract - My bowels feel great, using the bathroom less frequently, and everything is sinking... I've also gained a couple pounds, but have been changing my diet to not gain weight. My BMI is 22, and I am happy with it where it is, and have no desire to gain.

Emotionally it has been quite a roller coaster - I feel like I have been told I will live, and it is incredible. A huge weight feels like it is lifting off of me. I am aware of how incredibly lucky I am, and its a lot to take in. I feel like I have flipped a hundred coins, and every one has come up heads. My wife and I talked about kids for the first time in four years of marriage last week. Its amazing to see her belief that something like this would happen be validated. I also feel guilty to be among the so few benefiting from this.

However, I also feel like I worked incredibly hard to put myself in a position to benefit from a drug like this at age 31, and I have to pinch myself - I can't believe it is here. If I had anything to say to everyone not immediately impacted by Kalydeco, it is this: Keep doing the hard work. It isn't easy, but its worth it, and it will pay off for all of us.

Chris

cdale613
02-29-2012, 08:11 PM
Hi All,

I have been on Kalydeco for two weeks through the last VX-770 research effort tracking long term use for a year at UVA. I am continuing my full routine of meds for the time being.

The first change I notices were my nasal passages - within about 4 hours. They feel like I just did a sinus rinse.

Chest wise, I noticed a difference in 3 days. I feel MUCH less tight or inflamed. I don't hear crackles when I lie down to go to sleep, etc. It basically feels like I'm in the middle of a course of IVs without the nasty side effects...
My level of congestion/mucous production has lessened some, but I continue to be quite productive. However, my color has been all over the place - some days very light greenish yellow, other days gross greenish brown. I have been getting up a few plugs, though nothing black, etc.

After five days, my FEV1 was up 4%, to 84% of normal.

The biggest noticeable change so far has been in my digestive tract - My bowels feel great, using the bathroom less frequently, and everything is sinking... I've also gained a couple pounds, but have been changing my diet to not gain weight. My BMI is 22, and I am happy with it where it is, and have no desire to gain.

Emotionally it has been quite a roller coaster - I feel like I have been told I will live, and it is incredible. A huge weight feels like it is lifting off of me. I am aware of how incredibly lucky I am, and its a lot to take in. I feel like I have flipped a hundred coins, and every one has come up heads. My wife and I talked about kids for the first time in four years of marriage last week. Its amazing to see her belief that something like this would happen be validated. I also feel guilty to be among the so few benefiting from this.

However, I also feel like I worked incredibly hard to put myself in a position to benefit from a drug like this at age 31, and I have to pinch myself - I can't believe it is here. If I had anything to say to everyone not immediately impacted by Kalydeco, it is this: Keep doing the hard work. It isn't easy, but its worth it, and it will pay off for all of us.

Chris

dramamama
03-01-2012, 01:11 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i> Hi All, I have been on Kalydeco for two weeks through the last VX-770 research effort tracking long term use for a year at UVA. I am continuing my full routine of meds for the time being. The first change I notices were my nasal passages - within about 4 hours. They feel like I just did a sinus rinse. Chest wise, I noticed a difference in 3 days. I feel MUCH less tight or inflamed. I don't hear crackles when I lie down to go to sleep, etc. It basically feels like I'm in the middle of a course of IVs without the nasty side effects... My level of congestion/mucous production has lessened some, but I continue to be quite productive. However, my color has been all over the place - some days very light greenish yellow, other days gross greenish brown. I have been getting up a few plugs, though nothing black, etc. After five days, my FEV1 was up 4%, to 84% of normal. The biggest noticeable change so far has been in my digestive tract - My bowels feel great, using the bathroom less frequently, and everything is sinking... I've also gained a couple pounds, but have been changing my diet to not gain weight. My BMI is 22, and I am happy with it where it is, and have no desire to gain. Emotionally it has been quite a roller coaster - I feel like I have been told I will live, and it is incredible. A huge weight feels like it is lifting off of me. I am aware of how incredibly lucky I am, and its a lot to take in. I feel like I have flipped a hundred coins, and every one has come up heads. My wife and I talked about kids for the first time in four years of marriage last week. Its amazing to see her belief that something like this would happen be validated. I also feel guilty to be among the so few benefiting from this. However, I also feel like I worked incredibly hard to put myself in a position to benefit from a drug like this at age 31, and I have to pinch myself - I can't believe it is here. If I had anything to say to everyone not immediately impacted by Kalydeco, it is this: Keep doing the hard work. It isn't easy, but its worth it, and it will pay off for all of us. Chris</end quote>

<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Chris~
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">This is AWESOME!!!!! I am so excited for you and your family. You did hit the CF lotto. I think you are so wise to encourage all of us to work hard and take care of ourselves. I never thought I would see this day!! Praise GOD!
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I am VERY intrigued by what you are saying as far as the nasal passages the first day. I know someone who felt the EXACT same way. Like moisture, I think.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Question for you. Before the Kalydeco, were you a productive cougher or more tight and/or inflamed?
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">So, so happy for you. Thank you for sharing with us what it is like.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Mandy

dramamama
03-01-2012, 01:11 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cdale613</b></i> Hi All, I have been on Kalydeco for two weeks through the last VX-770 research effort tracking long term use for a year at UVA. I am continuing my full routine of meds for the time being. The first change I notices were my nasal passages - within about 4 hours. They feel like I just did a sinus rinse. Chest wise, I noticed a difference in 3 days. I feel MUCH less tight or inflamed. I don't hear crackles when I lie down to go to sleep, etc. It basically feels like I'm in the middle of a course of IVs without the nasty side effects... My level of congestion/mucous production has lessened some, but I continue to be quite productive. However, my color has been all over the place - some days very light greenish yellow, other days gross greenish brown. I have been getting up a few plugs, though nothing black, etc. After five days, my FEV1 was up 4%, to 84% of normal. The biggest noticeable change so far has been in my digestive tract - My bowels feel great, using the bathroom less frequently, and everything is sinking... I've also gained a couple pounds, but have been changing my diet to not gain weight. My BMI is 22, and I am happy with it where it is, and have no desire to gain. Emotionally it has been quite a roller coaster - I feel like I have been told I will live, and it is incredible. A huge weight feels like it is lifting off of me. I am aware of how incredibly lucky I am, and its a lot to take in. I feel like I have flipped a hundred coins, and every one has come up heads. My wife and I talked about kids for the first time in four years of marriage last week. Its amazing to see her belief that something like this would happen be validated. I also feel guilty to be among the so few benefiting from this. However, I also feel like I worked incredibly hard to put myself in a position to benefit from a drug like this at age 31, and I have to pinch myself - I can't believe it is here. If I had anything to say to everyone not immediately impacted by Kalydeco, it is this: Keep doing the hard work. It isn't easy, but its worth it, and it will pay off for all of us. Chris</end quote>

<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Chris~
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">This is AWESOME!!!!! I am so excited for you and your family. You did hit the CF lotto. I think you are so wise to encourage all of us to work hard and take care of ourselves. I never thought I would see this day!! Praise GOD!
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">I am VERY intrigued by what you are saying as far as the nasal passages the first day. I know someone who felt the EXACT same way. Like moisture, I think.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Question for you. Before the Kalydeco, were you a productive cougher or more tight and/or inflamed?
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">So, so happy for you. Thank you for sharing with us what it is like.
<span style="font-size: small; font-family: 'comic sans ms', sans-serif;">Mandy

cdale613
03-01-2012, 09:39 AM
Thanks Mandy, It is incredible.

Before starting Kalydeco, I was (and still am) a very productive cougher. By comparison, any chest tightness/inflammation was secondary. On the drug, I am still productive throughout the day, but it feels like I just took my albuterol puffer.

C

cdale613
03-01-2012, 09:39 AM
Thanks Mandy, It is incredible.

Before starting Kalydeco, I was (and still am) a very productive cougher. By comparison, any chest tightness/inflammation was secondary. On the drug, I am still productive throughout the day, but it feels like I just took my albuterol puffer.

C

ElenaFalcon
03-02-2012, 08:09 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> Now I still have the need for inhaled antibiotics and have come to the conclusion that I will be disabled for the rest of my life (as long as I have these lungs) because of bronchiactisis (lung damage). </end quote>
Hope your lungs will benefit from 809/661 in addition to Kaly without lung tx because of lungs self-cleaning.Keep working, don't stop. Did you try to get into 809 trial?

ElenaFalcon
03-02-2012, 08:09 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> Now I still have the need for inhaled antibiotics and have come to the conclusion that I will be disabled for the rest of my life (as long as I have these lungs) because of bronchiactisis (lung damage). </end quote>
Hope your lungs will benefit from 809/661 in addition to Kaly without lung tx because of lungs self-cleaning.Keep working, don't stop. Did you try to get into 809 trial?

fhayden
03-02-2012, 11:31 PM
I'm wondering for those taking Kalydeco if you've seen improvements with CFRD?
Thanks,
Frank

fhayden
03-02-2012, 11:31 PM
I'm wondering for those taking Kalydeco if you've seen improvements with CFRD?
Thanks,
Frank

saveferris2009
03-03-2012, 12:33 AM
This is a great question. I have a feeling Kalydeco can't re-generate beta cells in the pancreas. But I would imagine some inflammation would decrease .....

saveferris2009
03-03-2012, 12:33 AM
This is a great question. I have a feeling Kalydeco can't re-generate beta cells in the pancreas. But I would imagine some inflammation would decrease .....

fhayden
03-03-2012, 12:38 AM
I actually have CFRD since 2005 and I'd love nothing more then to take a pill and watch it go far far away <img src="i/expressions/face-icon-small-smile.gif" border="0">
Frank

fhayden
03-03-2012, 12:38 AM
I actually have CFRD since 2005 and I'd love nothing more then to take a pill and watch it go far far away <img src="i/expressions/face-icon-small-smile.gif" border="0">
Frank

Incomudrox
03-03-2012, 12:43 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> This is a great question. I have a feeling Kalydeco can't re-generate beta cells in the pancreas. But I would imagine some inflammation would decrease .....</end quote>

Kalydeco may not be able to but a lot of research in Germany and other sources says R-ALA and ALA can.

Incomudrox
03-03-2012, 12:43 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> This is a great question. I have a feeling Kalydeco can't re-generate beta cells in the pancreas. But I would imagine some inflammation would decrease .....</end quote>

Kalydeco may not be able to but a lot of research in Germany and other sources says R-ALA and ALA can.

JoAnn
03-03-2012, 12:16 PM
For those of you taking Kalyceco - Do you take it with a fatty food like the directions say? Also do you take it the same times every day or is there wiggle room on the weekends to shift it a couple hours?

JoAnn
03-03-2012, 12:16 PM
For those of you taking Kalyceco - Do you take it with a fatty food like the directions say? Also do you take it the same times every day or is there wiggle room on the weekends to shift it a couple hours?

LouLou
03-03-2012, 01:13 PM
JoAnn, Don't the directions say to take it 30 minutes AFTER (not with as you wrote) a fatty meal? And yes, this is how I attempt to take it because there was a lot of trial and error to find out what was the method to get the best absorption of the medicine. With regards to timing, no I don't take it every 12 but I should. I error on the side of taking after I eat one of my fatty meals which is, NON OF MY SNACKS, only meals. So I take it after I eat breakfast (30 min after first bite) and after I eat dinner (30 min after first bite). I hope this helps. I think the closer you adhere to the directions the better his results will be. If you wanted you could always try a little study. After he's been on it a month following directions go and get pfts then 2 weeks later come back in doing it how it fits best into his life and see if the pft goes down at all. The other option is to change his eating routine up. Make it simple, such as a high fat greek yogurt every 12 hrs. followed by the pill 30 minutes later. In fact I might just try that! Because i do feel that I may not be getting all the benefits now that I think about it.

LouLou
03-03-2012, 01:13 PM
JoAnn, Don't the directions say to take it 30 minutes AFTER (not with as you wrote) a fatty meal? And yes, this is how I attempt to take it because there was a lot of trial and error to find out what was the method to get the best absorption of the medicine. With regards to timing, no I don't take it every 12 but I should. I error on the side of taking after I eat one of my fatty meals which is, NON OF MY SNACKS, only meals. So I take it after I eat breakfast (30 min after first bite) and after I eat dinner (30 min after first bite). I hope this helps. I think the closer you adhere to the directions the better his results will be. If you wanted you could always try a little study. After he's been on it a month following directions go and get pfts then 2 weeks later come back in doing it how it fits best into his life and see if the pft goes down at all. The other option is to change his eating routine up. Make it simple, such as a high fat greek yogurt every 12 hrs. followed by the pill 30 minutes later. In fact I might just try that! Because i do feel that I may not be getting all the benefits now that I think about it.

semperfiohana
03-03-2012, 01:29 PM
here is the prescribing info. it says to take it with fatty food.

How should I take KALYDECO?
. Take KALYDECO exactly as your doctor tells you to take it.
. Always take KALYDECO with fatty food. Examples of fat-containing food include eggs,
butter, peanut butter, cheese pizza, etc.
Your doses of KALYDECO should be taken 12 hours apart.

semperfiohana
03-03-2012, 01:29 PM
here is the prescribing info. it says to take it with fatty food.

How should I take KALYDECO?
. Take KALYDECO exactly as your doctor tells you to take it.
. Always take KALYDECO with fatty food. Examples of fat-containing food include eggs,
butter, peanut butter, cheese pizza, etc.
Your doses of KALYDECO should be taken 12 hours apart.

cdale613
03-03-2012, 01:47 PM
As with any new medication, it must be integrated into our lives, and setting an alarm to take it at 12:00 hour spacing on the dot, 30 minutes after eating something is only going to make it more difficult to develop adherence to this medication. Yes it is only a pill, but I know plenty of people who have a hard time taking azithromycin on schedule.

I've been taking mine at the end of my morning meal, and in the evening after eating a dessert/snack. Roughly 12 hours apart, but not exactly, and I'm ok with that. With having to be out the door for school or work, waiting a full 30 minutes makes it more difficult to remember taking it. I'm taking it, and I'm not missing doses. That's what counts.

I have spoken to directors of the vertex trials, and my own physicians about this, and they didn't have a problem with this approach, and acknowledge the "real world" situations that make the 30 minutes after eating recommendation potentially difficult. If you can make it work, great, but don't make adherence to this medication harder than it has to be. Just take it, it works.

Chris

cdale613
03-03-2012, 01:47 PM
As with any new medication, it must be integrated into our lives, and setting an alarm to take it at 12:00 hour spacing on the dot, 30 minutes after eating something is only going to make it more difficult to develop adherence to this medication. Yes it is only a pill, but I know plenty of people who have a hard time taking azithromycin on schedule.

I've been taking mine at the end of my morning meal, and in the evening after eating a dessert/snack. Roughly 12 hours apart, but not exactly, and I'm ok with that. With having to be out the door for school or work, waiting a full 30 minutes makes it more difficult to remember taking it. I'm taking it, and I'm not missing doses. That's what counts.

I have spoken to directors of the vertex trials, and my own physicians about this, and they didn't have a problem with this approach, and acknowledge the "real world" situations that make the 30 minutes after eating recommendation potentially difficult. If you can make it work, great, but don't make adherence to this medication harder than it has to be. Just take it, it works.

Chris

JoAnn
03-03-2012, 01:56 PM
Hi Lauren,
Our directions do not indicate 30 minutes at all. It does say to take with a fatty food and 12 hours apart. It also says to not have grapefruit or seville oranges. Thanks. Our doctor also did not give any special directions except keep other meds and treatments the same, no grapefruit or seville oranges and also its noted that Rifampin and St. John's Wort may decrease its effectiveness. Thanks for your information. This is why I like to ask questions of others.

JoAnn
03-03-2012, 01:56 PM
Hi Lauren,
Our directions do not indicate 30 minutes at all. It does say to take with a fatty food and 12 hours apart. It also says to not have grapefruit or seville oranges. Thanks. Our doctor also did not give any special directions except keep other meds and treatments the same, no grapefruit or seville oranges and also its noted that Rifampin and St. John's Wort may decrease its effectiveness. Thanks for your information. This is why I like to ask questions of others.

JoAnn
03-03-2012, 01:59 PM
Thanks Chris - we can make anything work at this point for the optimal benefits. I am just trying to gather as much info and experiences as I can. Thanks again!

JoAnn
03-03-2012, 01:59 PM
Thanks Chris - we can make anything work at this point for the optimal benefits. I am just trying to gather as much info and experiences as I can. Thanks again!

Havoc
03-04-2012, 12:29 AM
Yes, when I was last in the hospital it was around $125K.

Havoc
03-04-2012, 12:29 AM
Yes, when I was last in the hospital it was around $125K.

dasjsmum
03-04-2012, 01:48 AM
HI Amy

I tried to do a quote but it jumped off...re your response to CFRD and beta cells. I dont believe that Beta cells are destroyed in CFRD, that is what happens with Type 1 diabetes. With CFRD I believe that the pancreas doesnt work as well and there may be some insulin resistance which causes CFRD much the same as Type 2 diabetes. CFRD is not the same as Type 1.

Having said that I think there is a good possibility that Kalydeco will make a difference for people with CFRD. My son (as you know) hasnt used his creon now for a couple of years. We dont know whether the Kalydeco has increased the function of his pancreas or if the weight gain is due to less inflammation. One thing's for sure, he doesnt need creon anymore.

Based on that I reckon there is a good chance of improvement for people with CFRD as (from my understanding - as one of my kids has Type 1 and cf) its cause is not the destruction of Beta cells as with Type 1.

dasjsmum
03-04-2012, 01:48 AM
HI Amy

I tried to do a quote but it jumped off...re your response to CFRD and beta cells. I dont believe that Beta cells are destroyed in CFRD, that is what happens with Type 1 diabetes. With CFRD I believe that the pancreas doesnt work as well and there may be some insulin resistance which causes CFRD much the same as Type 2 diabetes. CFRD is not the same as Type 1.

Having said that I think there is a good possibility that Kalydeco will make a difference for people with CFRD. My son (as you know) hasnt used his creon now for a couple of years. We dont know whether the Kalydeco has increased the function of his pancreas or if the weight gain is due to less inflammation. One thing's for sure, he doesnt need creon anymore.

Based on that I reckon there is a good chance of improvement for people with CFRD as (from my understanding - as one of my kids has Type 1 and cf) its cause is not the destruction of Beta cells as with Type 1.

dasjsmum
03-04-2012, 02:02 AM
Drama (it's Mandy isnt it?)

My son doesnt come on here at all sorry <img src="i/expressions/face-icon-small-sad.gif" border="0"> He is a member of the FB group 'praying for success with v770' as am I and my daughter. He has posted on there about his experiences.

He is doing really well and still receives the drug via the Open Label ongoing trial. We are not able to get it for my daughter or other son because it isnt being distributed here yet, and we dont know when it will be <img src="i/expressions/face-icon-small-sad.gif" border="0">

My 15 yr old is fine, but I we really want to get it for my daughter who is 30. I think she is pretty depressed about the whole thing, the cost in particular puts it completely out of reach. We have a different health system here which would mean we would have to get it on the Pharmiceuticals Benefit Scheme where the Gov subsidises the medicine. We had a big battle to get Pulmozyme, and because there are only about 100 people with g551d in Australia it doesnt look hopeful. BUT I am going to do whatever I can to get this drug.

Knowing that there is what amounts to a cure out there and possibly watching my daughter's health decline because of MONEY....grrr I cant tell you how this makes us feel. My daughter is still doing very well though....we might have to wait until the 809/661 (hopefully) proves successful so there is a bigger cohort of cfers the drug assists in Australia before we can get it on the PBS. Anyhow, we will continue.

dasjsmum
03-04-2012, 02:02 AM
Drama (it's Mandy isnt it?)

My son doesnt come on here at all sorry <img src="i/expressions/face-icon-small-sad.gif" border="0"> He is a member of the FB group 'praying for success with v770' as am I and my daughter. He has posted on there about his experiences.

He is doing really well and still receives the drug via the Open Label ongoing trial. We are not able to get it for my daughter or other son because it isnt being distributed here yet, and we dont know when it will be <img src="i/expressions/face-icon-small-sad.gif" border="0">

My 15 yr old is fine, but I we really want to get it for my daughter who is 30. I think she is pretty depressed about the whole thing, the cost in particular puts it completely out of reach. We have a different health system here which would mean we would have to get it on the Pharmiceuticals Benefit Scheme where the Gov subsidises the medicine. We had a big battle to get Pulmozyme, and because there are only about 100 people with g551d in Australia it doesnt look hopeful. BUT I am going to do whatever I can to get this drug.

Knowing that there is what amounts to a cure out there and possibly watching my daughter's health decline because of MONEY....grrr I cant tell you how this makes us feel. My daughter is still doing very well though....we might have to wait until the 809/661 (hopefully) proves successful so there is a bigger cohort of cfers the drug assists in Australia before we can get it on the PBS. Anyhow, we will continue.

dasjsmum
03-04-2012, 02:08 AM
Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).

dasjsmum
03-04-2012, 02:08 AM
Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).

saveferris2009
03-04-2012, 02:32 AM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dasjsmum</strong></em> HI Amy I tried to do a quote but it jumped off...re your response to CFRD and beta cells. I dont believe that Beta cells are destroyed in CFRD, that is what happens with Type 1 diabetes. With CFRD I believe that the pancreas doesnt work as well and there may be some insulin resistance which causes CFRD much the same as Type 2 diabetes. CFRD is not the same as Type 1..</end quote>

CFRD is a combo of Type I and Type II.

There is mysfunction (questionable destruction.... scientists still debate from what I understand,) of beta cells (Type I) as well as insulin resistance (Type II).

Characteristics of Type I : "This is likely due to scars in the pancreas because of thick mucus." (Quoted from the CF Foundation Brochure on CFRD<a href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-4th-edition.pdf">http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-4th-edition.pdf</a>&nbsp<img src="i/expressions/face-icon-small-wink.gif" border="0">

From the NIH: "<span>the dominant problem in CFRD being insulin deficiency and progressive beta cell dysfunction, making tablets that stimulate the beta cell unlikely to be a successful strategy."<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308796/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308796/</a>

saveferris2009
03-04-2012, 02:32 AM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dasjsmum</strong></em> HI Amy I tried to do a quote but it jumped off...re your response to CFRD and beta cells. I dont believe that Beta cells are destroyed in CFRD, that is what happens with Type 1 diabetes. With CFRD I believe that the pancreas doesnt work as well and there may be some insulin resistance which causes CFRD much the same as Type 2 diabetes. CFRD is not the same as Type 1..</end quote>

CFRD is a combo of Type I and Type II.

There is mysfunction (questionable destruction.... scientists still debate from what I understand,) of beta cells (Type I) as well as insulin resistance (Type II).

Characteristics of Type I : "This is likely due to scars in the pancreas because of thick mucus." (Quoted from the CF Foundation Brochure on CFRD<a href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-4th-edition.pdf">http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-4th-edition.pdf</a>&nbsp<img src="i/expressions/face-icon-small-wink.gif" border="0">

From the NIH: "<span>the dominant problem in CFRD being insulin deficiency and progressive beta cell dysfunction, making tablets that stimulate the beta cell unlikely to be a successful strategy."<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308796/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308796/</a>

saveferris2009
03-04-2012, 02:35 AM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dasjsmum</strong></em> Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).</end quote>

Nope, I have 2 class II's.
Won't stop me though... I'm still going to try it.
I'm so sorry to hear about your daughter in Australia...... I cannot imagine how frustrating that would be to the government say no to a medication.
Take care and have hope! Hugs!

saveferris2009
03-04-2012, 02:35 AM
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>dasjsmum</strong></em> Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).</end quote>

Nope, I have 2 class II's.
Won't stop me though... I'm still going to try it.
I'm so sorry to hear about your daughter in Australia...... I cannot imagine how frustrating that would be to the government say no to a medication.
Take care and have hope! Hugs!

fhayden
03-05-2012, 12:08 AM
Well, I've got CFRD. My local endo insists I have type 1 so I use an insulin pump. I'm going to start taking Kalydeco soon. I've already received my shipment of Kalydeco in the mail but haven't started taking it yet.. Because I've already receive a double lung transplant because of CF I have to coordinate my transplant labs with taking the medication. There are no studies available for people like myself. I'll report back if there is any improvement with my CFRD while taking Kalydeco. My CF doc doubts Kalydeco will help with CFRD. Frank Hayden

fhayden
03-05-2012, 12:08 AM
Well, I've got CFRD. My local endo insists I have type 1 so I use an insulin pump. I'm going to start taking Kalydeco soon. I've already received my shipment of Kalydeco in the mail but haven't started taking it yet.. Because I've already receive a double lung transplant because of CF I have to coordinate my transplant labs with taking the medication. There are no studies available for people like myself. I'll report back if there is any improvement with my CFRD while taking Kalydeco. My CF doc doubts Kalydeco will help with CFRD. Frank Hayden

dasjsmum
03-05-2012, 04:22 AM
Frank, why do you think you have cfrd when your endo says you have Type 1? There is a test for Type 1. Even given what Amy says above (which is pretty interesting, thanks Amy), Type 1 is obvious because it's due to an auto immune disease that destroys your beta cells and people become insulin dependetn straight away basically.


CFRD insulin needs usually taper and you arent completely insulin dependent to start with.

Your blood will confirm Type 1 if you have it. My son has Type 1 and uses an insulin pump. I have to tell you, the insulin pump is fantastic and he loves it. The benefit for you is that it will help keep your BGLs on a much more even keel which should assist you in keeping infection under control. I personlly still think Kalydeco might help with cfrd, but dont know, it will be interesting to see <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum
03-05-2012, 04:22 AM
Frank, why do you think you have cfrd when your endo says you have Type 1? There is a test for Type 1. Even given what Amy says above (which is pretty interesting, thanks Amy), Type 1 is obvious because it's due to an auto immune disease that destroys your beta cells and people become insulin dependetn straight away basically.


CFRD insulin needs usually taper and you arent completely insulin dependent to start with.

Your blood will confirm Type 1 if you have it. My son has Type 1 and uses an insulin pump. I have to tell you, the insulin pump is fantastic and he loves it. The benefit for you is that it will help keep your BGLs on a much more even keel which should assist you in keeping infection under control. I personlly still think Kalydeco might help with cfrd, but dont know, it will be interesting to see <img src="i/expressions/face-icon-small-smile.gif" border="0">

fhayden
03-05-2012, 03:15 PM
First, I'm 42 yrs old and wasn't diagnosed unil 2005. I was diagnosed with blood tests at UPMC and was told I have CFRD. My pancrease still makes some insulin and my sensitivies flucutate. I chose to use the pump because I got too many lows using lantus or pills.
There is a doctor who is the guru of CFRD and his name is Dr. Stalvey. He used to work at U of Florida but now works at a hospital in Maryland. Dr. Stalvey specializes in CFRD. He was my doctor for a short while before moving away. He even told me I have CFRD through blood tests. I don't know why my current endo thinks all CFRD are type 1 but she does. I've actually been to serveral endos in my area and still have issues conving them CFRD in not just a type 1 but its own type of diabetes.
Frank Hayden

fhayden
03-05-2012, 03:15 PM
First, I'm 42 yrs old and wasn't diagnosed unil 2005. I was diagnosed with blood tests at UPMC and was told I have CFRD. My pancrease still makes some insulin and my sensitivies flucutate. I chose to use the pump because I got too many lows using lantus or pills.
There is a doctor who is the guru of CFRD and his name is Dr. Stalvey. He used to work at U of Florida but now works at a hospital in Maryland. Dr. Stalvey specializes in CFRD. He was my doctor for a short while before moving away. He even told me I have CFRD through blood tests. I don't know why my current endo thinks all CFRD are type 1 but she does. I've actually been to serveral endos in my area and still have issues conving them CFRD in not just a type 1 but its own type of diabetes.
Frank Hayden

Incomudrox
03-05-2012, 08:08 PM
I wonder, for those who do not have their bacteria under control but are not full exacerbation stage at the time of start Kalydeco should they be admitted to get a jump on the bacteria? Giving the Kalydeco an edge and a better chance at gaining back lung function quickly?

Incomudrox
03-05-2012, 08:08 PM
I wonder, for those who do not have their bacteria under control but are not full exacerbation stage at the time of start Kalydeco should they be admitted to get a jump on the bacteria? Giving the Kalydeco an edge and a better chance at gaining back lung function quickly?

saveferris2009
03-06-2012, 01:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).</end quote> Nope, I have 2 class II's. Won't stop me though... I'm still going to try it. I'm so sorry to hear about your daughter in Australia...... I cannot imagine how frustrating that would be to the government say no to a medication. Take care and have hope! Hugs!</end quote>

Just to further clarify (and I'm sorry Ms. Mandy to hijack your thread), here is my rationale:

According to Vertex: "<span>In recombinant cells VX-770 increased CFTR channel open probability (P(o)) in both the F508del processing mutation<span>and the G551D gating mutation."
<a href="http://www.ncbi.nlm.nih.gov/pubmed/19846789">http://www.ncbi.nlm.nih.gov/pubmed/19846789</a>


From Annals of Human Genetics, 2003, by Rowntree et al,:
"Measurements of Cl- conductase of intestine and respiratory tissues of DF508 homozygote CF patients suggest, in vivo, that at least some DF508 CFTR can reach the plasma membrane"
<a href="http://www.colorado.edu/MCDB/MCDB4600/1ReviewPhenotype.pdf">http://www.colorado.edu/MCDB/MCDB4600/1ReviewPhenotype.pdf</a>


Most likely I won't notice any difference, but of course I want to just give it a try

saveferris2009
03-06-2012, 01:24 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dasjsmum</b></i> Amy, I thought I read that the 770 might work for your mutation? Is yours one of the gating mutations? If so, have you attempted to get Kalydeco yet? I just thought I read on the FB site I mentioned above that Kalydeco had been approved in the US for other gating mutations (which I thought yours might be).</end quote> Nope, I have 2 class II's. Won't stop me though... I'm still going to try it. I'm so sorry to hear about your daughter in Australia...... I cannot imagine how frustrating that would be to the government say no to a medication. Take care and have hope! Hugs!</end quote>

Just to further clarify (and I'm sorry Ms. Mandy to hijack your thread), here is my rationale:

According to Vertex: "<span>In recombinant cells VX-770 increased CFTR channel open probability (P(o)) in both the F508del processing mutation<span>and the G551D gating mutation."
<a href="http://www.ncbi.nlm.nih.gov/pubmed/19846789">http://www.ncbi.nlm.nih.gov/pubmed/19846789</a>


From Annals of Human Genetics, 2003, by Rowntree et al,:
"Measurements of Cl- conductase of intestine and respiratory tissues of DF508 homozygote CF patients suggest, in vivo, that at least some DF508 CFTR can reach the plasma membrane"
<a href="http://www.colorado.edu/MCDB/MCDB4600/1ReviewPhenotype.pdf">http://www.colorado.edu/MCDB/MCDB4600/1ReviewPhenotype.pdf</a>


Most likely I won't notice any difference, but of course I want to just give it a try

jbrandonAW
03-07-2012, 01:03 AM
I started taking the meds one week ago and I have had amazing results in a week. I feel horrible though, but a different kind of horrible. 2 weeks ago I had just finished 2 weeks of bactrium adm cipro and 1 week of levequin and I called my dr and asked for antibiotics and thought I might to be in the hospital. Now I don't feel like I have a lung infection at all. I feel different though, partly good and parrtly bad -or maybe its unknown bc I don't really know what feeling good is like. tHE GREATEST part is the rise in my PFT's in one week. I have an at home FEV1 meter... well I hate to do this but to check out the whole story www.insidecf.blogspot.com .... My blog has my updates on it... amazing truely amazing!

jbrandonAW
03-07-2012, 01:03 AM
I started taking the meds one week ago and I have had amazing results in a week. I feel horrible though, but a different kind of horrible. 2 weeks ago I had just finished 2 weeks of bactrium adm cipro and 1 week of levequin and I called my dr and asked for antibiotics and thought I might to be in the hospital. Now I don't feel like I have a lung infection at all. I feel different though, partly good and parrtly bad -or maybe its unknown bc I don't really know what feeling good is like. tHE GREATEST part is the rise in my PFT's in one week. I have an at home FEV1 meter... well I hate to do this but to check out the whole story www.insidecf.blogspot.com .... My blog has my updates on it... amazing truely amazing!

saveferris2009
03-07-2012, 01:17 AM
that's so exciting. congrats! <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
03-07-2012, 01:17 AM
that's so exciting. congrats! <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum
03-07-2012, 05:45 AM
Interesting info re the cfrd and Type 1 thanks <img src="i/expressions/face-icon-small-smile.gif" border="0"> Bummer with the class 11, I thought you were a gating mutation. It's coming though <img src="i/expressions/face-icon-small-smile.gif" border="0">

dasjsmum
03-07-2012, 05:45 AM
Interesting info re the cfrd and Type 1 thanks <img src="i/expressions/face-icon-small-smile.gif" border="0"> Bummer with the class 11, I thought you were a gating mutation. It's coming though <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
03-07-2012, 11:44 AM
Ya I'm trying Kalydeco this weekend anyway, though. Probably won't do anything, but it's possible it will have a little impact.

I'll keep you all posted

saveferris2009
03-07-2012, 11:44 AM
Ya I'm trying Kalydeco this weekend anyway, though. Probably won't do anything, but it's possible it will have a little impact.

I'll keep you all posted

musclemania70
03-07-2012, 12:17 PM
Jessica, thank you so much for sharing your experiences!! That is nothing short of AMAZING AND MIRACULOUS!! We are so happy for you!!!!!!!! Please continue to keep us posted on your improvements and your experiences. I love hearing about these victories and improvements as I'm sure most people do. As hard as it is that we ALL can't participate, I'm still thrilled for you and look forward to hearing about your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> Amy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.

musclemania70
03-07-2012, 12:17 PM
Jessica, thank you so much for sharing your experiences!! That is nothing short of AMAZING AND MIRACULOUS!! We are so happy for you!!!!!!!! Please continue to keep us posted on your improvements and your experiences. I love hearing about these victories and improvements as I'm sure most people do. As hard as it is that we ALL can't participate, I'm still thrilled for you and look forward to hearing about your new life <img src="i/expressions/face-icon-small-smile.gif" border="0"> Amy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.

saveferris2009
03-07-2012, 01:40 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> JAmy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.</end quote>

I will most likely post most details on my blog. But I'll for sure keep everyone posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
03-07-2012, 01:40 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> JAmy, that would be great if you kept us updated as well and let us know how its going. We would all like to hear about your experiment.</end quote>

I will most likely post most details on my blog. But I'll for sure keep everyone posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">

bigstar
03-07-2012, 08:57 PM
Start a new thread! You know us! We are eager to find out all the bloody details! Take care!

bigstar
03-07-2012, 08:57 PM
Start a new thread! You know us! We are eager to find out all the bloody details! Take care!

musclemania70
03-08-2012, 03:45 PM
I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script.
No additional costs except the regular copay.
I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go.
Last hurdle to be conquered is getting the doc to say yes......

musclemania70
03-08-2012, 03:45 PM
I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script.
No additional costs except the regular copay.
I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go.
Last hurdle to be conquered is getting the doc to say yes......

sue35
03-08-2012, 04:30 PM
Did you call your insurance company? What exactly did you ask? I just got new insurance but don't know what to ask them about covering it.

sue35
03-08-2012, 04:30 PM
Did you call your insurance company? What exactly did you ask? I just got new insurance but don't know what to ask them about covering it.

musclemania70
03-08-2012, 07:09 PM
Ask the pharmacy carrier that your insurance provides, "do you cover Kalydeco?"

musclemania70
03-08-2012, 07:09 PM
Ask the pharmacy carrier that your insurance provides, "do you cover Kalydeco?"

saveferris2009
03-08-2012, 08:12 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script. No additional costs except the regular copay. I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go. ...</end quote>

Ya same happened to me.
Not sure who started the rumors that you had to provide documentation of mutation or there was a very limited amount. As you saw from my earlier posts, I thought this was bogus.
Glad that you and I both found out that it's not true <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck with your doc! Let me know if you need negotiation tips <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
03-08-2012, 08:12 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>musclemania70</b></i> I found out my insurance covers Kalydeco, no further verification or letters from Doctor needed, just a script. No additional costs except the regular copay. I also spoke with Vertex on the phone and they said as long as your doctor gives you a prescription for it, then you are good to go. ...</end quote>

Ya same happened to me.
Not sure who started the rumors that you had to provide documentation of mutation or there was a very limited amount. As you saw from my earlier posts, I thought this was bogus.
Glad that you and I both found out that it's not true <img src="i/expressions/face-icon-small-smile.gif" border="0"> Best of luck with your doc! Let me know if you need negotiation tips <img src="i/expressions/face-icon-small-smile.gif" border="0">

Incomudrox
03-08-2012, 08:24 PM
I called my insurance but it's not even in their formulary yet, the rep said they'd just have to send a letter with ANY type of supporting information and they should approve it... hmm.

Incomudrox
03-08-2012, 08:24 PM
I called my insurance but it's not even in their formulary yet, the rep said they'd just have to send a letter with ANY type of supporting information and they should approve it... hmm.

sue35
03-08-2012, 09:32 PM
Why wouldn't a doctor prescribe it? I know it might not do anything but as long as insurance covers it it doesn't hurt them. Although I know my doctor won't say yes. I have horrible negotiating skills!

sue35
03-08-2012, 09:32 PM
Why wouldn't a doctor prescribe it? I know it might not do anything but as long as insurance covers it it doesn't hurt them. Although I know my doctor won't say yes. I have horrible negotiating skills!

Incomudrox
03-08-2012, 09:37 PM
The way I see it is, I live in a city that 1. Had the first hospital in the country, and 2. at one point had the most hospitals in the US. 3. It still has almost 9 hospital in the city. 4. there are about 15 CF centers within 100 miles of me. If my doctor doesn't want to go along, I'll find one that will! For me this is about my life, not his pay check. That being said I haven't brought the subject up with my doctors yet, but fully intend to on Tuesday. I live 5min from my clinic now, but I am not opposed to driving the extra 50min to John Hopkins, it's not going to kill me or break my heart to walk away.

Incomudrox
03-08-2012, 09:37 PM
The way I see it is, I live in a city that 1. Had the first hospital in the country, and 2. at one point had the most hospitals in the US. 3. It still has almost 9 hospital in the city. 4. there are about 15 CF centers within 100 miles of me. If my doctor doesn't want to go along, I'll find one that will! For me this is about my life, not his pay check. That being said I haven't brought the subject up with my doctors yet, but fully intend to on Tuesday. I live 5min from my clinic now, but I am not opposed to driving the extra 50min to John Hopkins, it's not going to kill me or break my heart to walk away.

saveferris2009
03-08-2012, 11:32 PM
Ya I was fully prepared to ask other CF docs (I know a few that would have given it to me) if mine didn't. I think your outlook is perfect. There was no way I wasn't going to try the drug.... just to try.

WHat mutations do you have, Icomudrox?

saveferris2009
03-08-2012, 11:32 PM
Ya I was fully prepared to ask other CF docs (I know a few that would have given it to me) if mine didn't. I think your outlook is perfect. There was no way I wasn't going to try the drug.... just to try.

WHat mutations do you have, Icomudrox?

Incomudrox
03-09-2012, 12:18 AM
I have DF508 I am waiting on John Hopkins to actually find out the other one. Ambry lost my spit sample..... other wise I would have known the 2nd some 2 months ago. UPENN is sending my Blood to JH for their CFRI project they are working on.

Incomudrox
03-09-2012, 12:18 AM
I have DF508 I am waiting on John Hopkins to actually find out the other one. Ambry lost my spit sample..... other wise I would have known the 2nd some 2 months ago. UPENN is sending my Blood to JH for their CFRI project they are working on.

saveferris2009
03-09-2012, 12:31 AM
Cool. I'm interested to hear what your experience with Kalydeco is.

Sorry Ambry lost your sample....that's annoying.

Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src="i/expressions/face-icon-small-smile.gif" border="0">

saveferris2009
03-09-2012, 12:31 AM
Cool. I'm interested to hear what your experience with Kalydeco is.

Sorry Ambry lost your sample....that's annoying.

Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Incomudrox
03-09-2012, 01:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Cool. I'm interested to hear what your experience with Kalydeco is. Sorry Ambry lost your sample....that's annoying. Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src=""></end quote>
I will def pick out of what you posted to add to my ammunition I don't want to have to go away and come back with more info, I'm going with everything the first time. It is quite annoying that my sample was lost. *sigh* I also heart my insurance 99% of the time. I hope to have an answer in a few weeks time as to what will be going on.

Incomudrox
03-09-2012, 01:33 AM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> Cool. I'm interested to hear what your experience with Kalydeco is. Sorry Ambry lost your sample....that's annoying. Sounds like you can definitely get a hold of the drug whenever you want. If you want good documentation for what to send to insurance (although it sounds like you don't need much), check out my earlier comment It shows that in theory, Kaly could work slightly for DF508. I know most in the studies didn't see much, but there was a statistically significant difference in sweat chloride. <img src=""></end quote>
I will def pick out of what you posted to add to my ammunition I don't want to have to go away and come back with more info, I'm going with everything the first time. It is quite annoying that my sample was lost. *sigh* I also heart my insurance 99% of the time. I hope to have an answer in a few weeks time as to what will be going on.

saveferris2009
03-10-2012, 03:11 AM
Took my 1st dose tonight. Down the hatch......

saveferris2009
03-10-2012, 03:11 AM
Took my 1st dose tonight. Down the hatch......

dramamama
03-10-2012, 12:26 PM
woohoooooooooo!
Praise the Lord!

dramamama
03-10-2012, 12:26 PM
woohoooooooooo!
Praise the Lord!

musclemania70
03-10-2012, 02:44 PM
EXCITING!!!!

musclemania70
03-10-2012, 02:44 PM
EXCITING!!!!

dasjsmum
03-12-2012, 08:17 PM
Oh Amy! Im so excited for you (and everyone else), just read you blog! I hope this works for you all to some degree at least.

dasjsmum
03-12-2012, 08:17 PM
Oh Amy! Im so excited for you (and everyone else), just read you blog! I hope this works for you all to some degree at least.

dasjsmum
03-12-2012, 08:24 PM
Here is a link to the FB page 'praying for succes 770/809 (I think Lindsay's mum started it) for anyone who is interested in hearing about people's experiences since starting Kalydeco. Some people have posted pics of the express van delivering the drug and of their son taking his first blue pill hahha...bottle of champagne on the table...we feel their joy

http://www.facebook.com/groups/153375788050316/

dasjsmum
03-12-2012, 08:24 PM
Here is a link to the FB page 'praying for succes 770/809 (I think Lindsay's mum started it) for anyone who is interested in hearing about people's experiences since starting Kalydeco. Some people have posted pics of the express van delivering the drug and of their son taking his first blue pill hahha...bottle of champagne on the table...we feel their joy

http://www.facebook.com/groups/153375788050316/

CFcarebear
03-22-2012, 01:49 AM
My husband, Jake, has been on it for about 1 1/2 months. He felt HORRIBLE for at least 2-3 weeks. He coughed up very sticky, dense thick mucus and he said the color is much different (like the color of old infection) He is still to this day coughing up that same stuff, but he is feeling better. His FEV1 was 29% when he started and his last FEV1 was 35% (last week) so at least it has gone up! He said that feels chills, soreness and extreme fatigue sometimes following his pill. He also said the mucus production is sporadic and he has been doing extra long treatments and more of them since his coughs have been more productive.

~Emily

CFcarebear
03-22-2012, 01:49 AM
My husband, Jake, has been on it for about 1 1/2 months. He felt HORRIBLE for at least 2-3 weeks. He coughed up very sticky, dense thick mucus and he said the color is much different (like the color of old infection) He is still to this day coughing up that same stuff, but he is feeling better. His FEV1 was 29% when he started and his last FEV1 was 35% (last week) so at least it has gone up! He said that feels chills, soreness and extreme fatigue sometimes following his pill. He also said the mucus production is sporadic and he has been doing extra long treatments and more of them since his coughs have been more productive.

~Emily

jessykt
03-22-2012, 12:07 PM
I've been on the drug for about 10 days. After my second dose, I had a short time of extreme chest pain, followed by half a day of coughing a bunch of crap out, and now NOTHING. My cough did change from a series of short junky coughs to one big cough like sounds like a sneeze. I don't really feel any different, other than a spontaneous 2 block run the other day (that hasn't happened in years). Maybe I'm better because I haven't had any xopenex nebs (insurance is denying xoepenex!). So maybe that's the big difference and I just don't know if it really is. But I'm not feeling like most people on here.

I'm doing two CORE studies, one at National Jewish and one at Children's Hospital. I'll do pfts at Jewish, so we'll see what they are at the next appt on April 3rd. My last fev1 was 2.03 L. I think that was 61%.

I have CFRD, but so mild that after a couple years of one unit insulin with meals they switched me to metformin. My dr told me they want to keep an eye on the diabetes because there is a chance that this could affect it. That is super exciting!

jessykt
03-22-2012, 12:07 PM
I've been on the drug for about 10 days. After my second dose, I had a short time of extreme chest pain, followed by half a day of coughing a bunch of crap out, and now NOTHING. My cough did change from a series of short junky coughs to one big cough like sounds like a sneeze. I don't really feel any different, other than a spontaneous 2 block run the other day (that hasn't happened in years). Maybe I'm better because I haven't had any xopenex nebs (insurance is denying xoepenex!). So maybe that's the big difference and I just don't know if it really is. But I'm not feeling like most people on here.

I'm doing two CORE studies, one at National Jewish and one at Children's Hospital. I'll do pfts at Jewish, so we'll see what they are at the next appt on April 3rd. My last fev1 was 2.03 L. I think that was 61%.

I have CFRD, but so mild that after a couple years of one unit insulin with meals they switched me to metformin. My dr told me they want to keep an eye on the diabetes because there is a chance that this could affect it. That is super exciting!

JENNYC
03-22-2012, 02:12 PM
We just got the bill for my daughters last hospital stay, it was 4 nights, 5 days(not sure how they calculate the room and board). The only med she received from them was IV Vancomycin. Our bill was 17,340, however we take all of her meds with us when we go and we also refuse respitory treatment. I refuse to pay inflated prices on her meds that she already has and we actually get help with, and I refuse the respitory because her vest has always done 10 times better then there lame attempts at CPT ( they barely tap her and don't flip her properly). I am not going to pay someone to come hit start on her vest and nebulizer. Plus my insurance has a lifetime maximum. I got smart last year and signed up with Combined Insurance for their Accident and sickness policy. We have a 1 year waiting period before we can get benefits for her but it would have paid her copay 100%. Excited for October to get her so we will get benefits!!

Also Abby was diagnosed 4 years ago and the hospital just did the small genetics test so we don't know her second mutation. I asked at her last appointment if we should get the big test done so we know her second mutation and I was told no. I usually don't argue with my doc but I think I should right?

JENNYC
03-22-2012, 02:12 PM
We just got the bill for my daughters last hospital stay, it was 4 nights, 5 days(not sure how they calculate the room and board). The only med she received from them was IV Vancomycin. Our bill was 17,340, however we take all of her meds with us when we go and we also refuse respitory treatment. I refuse to pay inflated prices on her meds that she already has and we actually get help with, and I refuse the respitory because her vest has always done 10 times better then there lame attempts at CPT ( they barely tap her and don't flip her properly). I am not going to pay someone to come hit start on her vest and nebulizer. Plus my insurance has a lifetime maximum. I got smart last year and signed up with Combined Insurance for their Accident and sickness policy. We have a 1 year waiting period before we can get benefits for her but it would have paid her copay 100%. Excited for October to get her so we will get benefits!!

Also Abby was diagnosed 4 years ago and the hospital just did the small genetics test so we don't know her second mutation. I asked at her last appointment if we should get the big test done so we know her second mutation and I was told no. I usually don't argue with my doc but I think I should right?

semperfiohana
03-22-2012, 02:17 PM
yes find out her other mutation! i didn't find mine out until i was a teenager, but i'm glad we did. i was able to jump on kalydeco when it came out because i knew both of my mutations.

semperfiohana
03-22-2012, 02:17 PM
yes find out her other mutation! i didn't find mine out until i was a teenager, but i'm glad we did. i was able to jump on kalydeco when it came out because i knew both of my mutations.

JENNYC
03-22-2012, 04:32 PM
I just called her nurse to get it set up, I checked and she was only tested for 51 mutations. Thank you, all this is just too exciting to be real!!! God bless all of you for posting and giving us strength and hope. I am ofter so meek and don't push the docs when I should. Yall are giving me the backbone I need. <img src="i/expressions/face-icon-small-smile.gif" border="0">

JENNYC
03-22-2012, 04:32 PM
I just called her nurse to get it set up, I checked and she was only tested for 51 mutations. Thank you, all this is just too exciting to be real!!! God bless all of you for posting and giving us strength and hope. I am ofter so meek and don't push the docs when I should. Yall are giving me the backbone I need. <img src="i/expressions/face-icon-small-smile.gif" border="0">