To those on kalydeco---Lauren (your thoughts, please)
- Thread starter dramamama
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saveferris2009
New member
I would love to know as well! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good question!
saveferris2009
New member
I would love to know as well! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good question!
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.
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.
K
kgfrompa
Guest
<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>
K
kgfrompa
Guest
<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
New member
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
New member
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">
<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!
<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!
<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!
<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!
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.
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
New member
Interesting.... Lauren was there a consistency change in the mucus? More liquid like? Color texture etc cetra?
Incomudrox
New member
Interesting.... Lauren was there a consistency change in the mucus? More liquid like? Color texture etc cetra?
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!
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!
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!
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!
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!
You all have great questions!
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!
You all have great questions!