I've seen post in the past about taking less enzymes or none at all while on Kalydeco. Can anyone who's on this shed more light. I know the docs are going totell patients to continuetaking enzymes as directed, but would be nice and a huge quality of life factor if this drug limited or even eliminated the need.
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Kalydeco question
- Thread starter flatfordl
- Start date
I've seen post in the past about taking less enzymes or none at all while on Kalydeco. Can anyone who's on this shed more light. I know the docs are going totell patients to continuetaking enzymes as directed, but would be nice and a huge quality of life factor if this drug limited or even eliminated the need.
I think for a growing child the need will persist even with taking Kalydeco. The reason is because the root of the problem with the pancreas will still be present therefore without enzymes it is unlikely that the child would absorb all the minerals and vitamins without the enzyme. Realizing enzymes may in your mind be largely for fat, they are also meant to help a child get "everything" they should out of their food.
The reason people are cutting back on their enzymes is because they are gaining weight on Kalydeco. They are not necessarily absorbing their food better but rather not burning calories as much due to the body not requiring as much energy to run. This is due to lowered heartrate, respiratory rate, and increased lung function.
I hope this helps. She'll still need her enzymes until she is at least 18. Even then I think it is wise to keep using the enzymes and to cut back on food. Otherwise, it's like using cf as a diet if that makes sense. Trust me...most of us have tried this during our teen years (ie. not taking our enzymes to reduce our weight) and the result is bellyaches and possible pancreatitis.
The reason people are cutting back on their enzymes is because they are gaining weight on Kalydeco. They are not necessarily absorbing their food better but rather not burning calories as much due to the body not requiring as much energy to run. This is due to lowered heartrate, respiratory rate, and increased lung function.
I hope this helps. She'll still need her enzymes until she is at least 18. Even then I think it is wise to keep using the enzymes and to cut back on food. Otherwise, it's like using cf as a diet if that makes sense. Trust me...most of us have tried this during our teen years (ie. not taking our enzymes to reduce our weight) and the result is bellyaches and possible pancreatitis.
I think for a growing child the need will persist even with taking Kalydeco. The reason is because the root of the problem with the pancreas will still be present therefore without enzymes it is unlikely that the child would absorb all the minerals and vitamins without the enzyme. Realizing enzymes may in your mind be largely for fat, they are also meant to help a child get "everything" they should out of their food.
The reason people are cutting back on their enzymes is because they are gaining weight on Kalydeco. They are not necessarily absorbing their food better but rather not burning calories as much due to the body not requiring as much energy to run. This is due to lowered heartrate, respiratory rate, and increased lung function.
I hope this helps. She'll still need her enzymes until she is at least 18. Even then I think it is wise to keep using the enzymes and to cut back on food. Otherwise, it's like using cf as a diet if that makes sense. Trust me...most of us have tried this during our teen years (ie. not taking our enzymes to reduce our weight) and the result is bellyaches and possible pancreatitis.
The reason people are cutting back on their enzymes is because they are gaining weight on Kalydeco. They are not necessarily absorbing their food better but rather not burning calories as much due to the body not requiring as much energy to run. This is due to lowered heartrate, respiratory rate, and increased lung function.
I hope this helps. She'll still need her enzymes until she is at least 18. Even then I think it is wise to keep using the enzymes and to cut back on food. Otherwise, it's like using cf as a diet if that makes sense. Trust me...most of us have tried this during our teen years (ie. not taking our enzymes to reduce our weight) and the result is bellyaches and possible pancreatitis.
My son stopped his enzymes on Kalydeco due to the reasons Lauren outlined above. I dont necessarily agree with Lauren thpough because we dont really know.
I actually think that if the drug is started straight away the pancreas wont get clogged and the digestive enzmes will continue to flow. This is just my opinion. Pancreatic functioning wasnt tested as part of the trial. What we do know is what Lauren stated above, and she raises interesting points about the growing child. My son is an adult.
However, considering the base cause of cf symptoms is the thick mucous caused by the defective cftr you would think that if that was corrected from birth a person would have a normal life and not experience digestive or lung problems.
I guess we will find out <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope that I am right <img src="i/expressions/face-icon-small-smile.gif" border="0">
I actually think that if the drug is started straight away the pancreas wont get clogged and the digestive enzmes will continue to flow. This is just my opinion. Pancreatic functioning wasnt tested as part of the trial. What we do know is what Lauren stated above, and she raises interesting points about the growing child. My son is an adult.
However, considering the base cause of cf symptoms is the thick mucous caused by the defective cftr you would think that if that was corrected from birth a person would have a normal life and not experience digestive or lung problems.
I guess we will find out <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope that I am right <img src="i/expressions/face-icon-small-smile.gif" border="0">
My son stopped his enzymes on Kalydeco due to the reasons Lauren outlined above. I dont necessarily agree with Lauren thpough because we dont really know.
I actually think that if the drug is started straight away the pancreas wont get clogged and the digestive enzmes will continue to flow. This is just my opinion. Pancreatic functioning wasnt tested as part of the trial. What we do know is what Lauren stated above, and she raises interesting points about the growing child. My son is an adult.
However, considering the base cause of cf symptoms is the thick mucous caused by the defective cftr you would think that if that was corrected from birth a person would have a normal life and not experience digestive or lung problems.
I guess we will find out <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope that I am right <img src="i/expressions/face-icon-small-smile.gif" border="0">
I actually think that if the drug is started straight away the pancreas wont get clogged and the digestive enzmes will continue to flow. This is just my opinion. Pancreatic functioning wasnt tested as part of the trial. What we do know is what Lauren stated above, and she raises interesting points about the growing child. My son is an adult.
However, considering the base cause of cf symptoms is the thick mucous caused by the defective cftr you would think that if that was corrected from birth a person would have a normal life and not experience digestive or lung problems.
I guess we will find out <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope that I am right <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hello everyone,
I had researched online about the drug Kalydeco and on the Vertex Pharmaceuticals website it says the drug is under review until April of this year and has not been released yet. My question is.. Are you or the people you know that are taking Kalydeco going through the clinical trials? Because I had not heard this drug was released. Hmm.. Anyway, sorry I am new to the website and I was not sure where else to find information on this drug and this was for first Post I found when I searched ! thank you
I had researched online about the drug Kalydeco and on the Vertex Pharmaceuticals website it says the drug is under review until April of this year and has not been released yet. My question is.. Are you or the people you know that are taking Kalydeco going through the clinical trials? Because I had not heard this drug was released. Hmm.. Anyway, sorry I am new to the website and I was not sure where else to find information on this drug and this was for first Post I found when I searched ! thank you
Hello everyone,
I had researched online about the drug Kalydeco and on the Vertex Pharmaceuticals website it says the drug is under review until April of this year and has not been released yet. My question is.. Are you or the people you know that are taking Kalydeco going through the clinical trials? Because I had not heard this drug was released. Hmm.. Anyway, sorry I am new to the website and I was not sure where else to find information on this drug and this was for first Post I found when I searched ! thank you
I had researched online about the drug Kalydeco and on the Vertex Pharmaceuticals website it says the drug is under review until April of this year and has not been released yet. My question is.. Are you or the people you know that are taking Kalydeco going through the clinical trials? Because I had not heard this drug was released. Hmm.. Anyway, sorry I am new to the website and I was not sure where else to find information on this drug and this was for first Post I found when I searched ! thank you
Hi Tasha, Kalydeco is not released yet. Those of us who participated in Ph. 3 are getting the medication through an open label extension program that allows the company and the FDA to continue gathering data beyond Ph. 3 which is important for long term safety. Additionally, there is an extended access program that have a FEV1 in teh advanced lung disease range. I think the cut off is <40% FEV1 but I could be off on this number. I think the drug will hit the market either in March or April. If you haven't discussed it with your dr and whether or not you are a candidate to take it you should! Good luck with your cf and welcome to cysticfibrosis.com!
Hi Tasha, Kalydeco is not released yet. Those of us who participated in Ph. 3 are getting the medication through an open label extension program that allows the company and the FDA to continue gathering data beyond Ph. 3 which is important for long term safety. Additionally, there is an extended access program that have a FEV1 in teh advanced lung disease range. I think the cut off is <40% FEV1 but I could be off on this number. I think the drug will hit the market either in March or April. If you haven't discussed it with your dr and whether or not you are a candidate to take it you should! Good luck with your cf and welcome to cysticfibrosis.com!
HI Tasha
Just adding to Lauren's comment, my son has been in the trial also and is still receiving the drug on open label (all participants now get the actual drug rather than half getting placebo).
I have two other children who do not have access to the drug, and wont be able to get it for some time. Kalydeco is due for release in the US market in Feb or March, but we are in Australia so dont know how we will get it for the other two kids (but we will find a way)!
Just adding to Lauren's comment, my son has been in the trial also and is still receiving the drug on open label (all participants now get the actual drug rather than half getting placebo).
I have two other children who do not have access to the drug, and wont be able to get it for some time. Kalydeco is due for release in the US market in Feb or March, but we are in Australia so dont know how we will get it for the other two kids (but we will find a way)!
HI Tasha
Just adding to Lauren's comment, my son has been in the trial also and is still receiving the drug on open label (all participants now get the actual drug rather than half getting placebo).
I have two other children who do not have access to the drug, and wont be able to get it for some time. Kalydeco is due for release in the US market in Feb or March, but we are in Australia so dont know how we will get it for the other two kids (but we will find a way)!
Just adding to Lauren's comment, my son has been in the trial also and is still receiving the drug on open label (all participants now get the actual drug rather than half getting placebo).
I have two other children who do not have access to the drug, and wont be able to get it for some time. Kalydeco is due for release in the US market in Feb or March, but we are in Australia so dont know how we will get it for the other two kids (but we will find a way)!