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.
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To those on kalydeco---Lauren (your thoughts, please)
- Thread starter dramamama
- Start date
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.
S
semperfiohana
Guest
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.
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.
S
semperfiohana
Guest
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.
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.
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
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
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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
New member
<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> <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>
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> <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
New member
<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> <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>
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> <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>