Kalydeco - liver enzymes are elevated *UPDATE*

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Tom

New member
Well, our doctor called and informed us that our son's liver enzymes are elevated. He has been on Kalydeco for 2 1/2 months. The doctor contacted Vertex researchers and they told her that he needs to be monitored every week to determine if the enzymes are on the rise or just temporary adjustment to the medicine. If they don't rise, he will continued to be monitored on a monthly basis until they resolve.
On a good note, his culture only showed normal flora. This has never happened. All other indicators since starting Kalydeco have improved significantly.
I know that Kalydeco has only been around for a few short months, but has anyone else experienced elevated liver enzymes from Kalydeco?
 
T

Tom

New member
Well, our doctor called and informed us that our son's liver enzymes are elevated. He has been on Kalydeco for 2 1/2 months. The doctor contacted Vertex researchers and they told her that he needs to be monitored every week to determine if the enzymes are on the rise or just temporary adjustment to the medicine. If they don't rise, he will continued to be monitored on a monthly basis until they resolve.
On a good note, his culture only showed normal flora. This has never happened. All other indicators since starting Kalydeco have improved significantly.
I know that Kalydeco has only been around for a few short months, but has anyone else experienced elevated liver enzymes from Kalydeco?
 
T

Tom

New member
Kalydeco - liver enzymes are elevated

Forgot to mention that they are 2x upper normal limit.
 
T

Tom

New member
Kalydeco - liver enzymes are elevated

Forgot to mention that they are 2x upper normal limit.
 
H

Havoc

New member
Kalydeco - liver enzymes are elevated

Bummer. I was wondering if that was gonna be a problem for some people.
 
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Havoc

New member
Kalydeco - liver enzymes are elevated

Bummer. I was wondering if that was gonna be a problem for some people.
 
T

Tom

New member
Kalydeco - liver enzymes are elevated

Apparently there were instances of transient elevated liver enzymes during the clinical trials that resolved at some point. We were not given the details from Vertex.
 
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Tom

New member
Kalydeco - liver enzymes are elevated

Apparently there were instances of transient elevated liver enzymes during the clinical trials that resolved at some point. We were not given the details from Vertex.
 
I

Incomudrox

New member
Kalydeco - liver enzymes are elevated

Kalydeco is very toxic. Given on a daily basis indefinetly we're going to see a lot more cases of Cystic Fibrosis Related Liver Disease.
 
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Incomudrox

New member
Kalydeco - liver enzymes are elevated

Kalydeco is very toxic. Given on a daily basis indefinetly we're going to see a lot more cases of Cystic Fibrosis Related Liver Disease.
 
T

TreasureGoddess

Member
Kalydeco - liver enzymes are elevated

Tom, were your son's liver numbers bad before beginning or did kalydeco bring on the first issues with liver problems?
 
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TreasureGoddess

Member
Kalydeco - liver enzymes are elevated

Tom, were your son's liver numbers bad before beginning or did kalydeco bring on the first issues with liver problems?
 
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Tom

New member
Kalydeco - liver enzymes are elevated

Prior to Kalydeco my son liver enzymes were at the upper limit of normal. However, this test was done in Aug 2011. He did not have a blood test immediately before starting Kalydeco to get a baseline. So we are unclear if this is from Kalydeco or not. My son did have elevated liver enzymes when he was an infant which were normalized by Urso (he has not been on Urso since 2006). The weekly tests will give us a better picture. The doctor is not alarmed because the elevation is mild at this point. We will get the results of this weeks test either tomorrow or Monday.
 
T

Tom

New member
Kalydeco - liver enzymes are elevated

Prior to Kalydeco my son liver enzymes were at the upper limit of normal. However, this test was done in Aug 2011. He did not have a blood test immediately before starting Kalydeco to get a baseline. So we are unclear if this is from Kalydeco or not. My son did have elevated liver enzymes when he was an infant which were normalized by Urso (he has not been on Urso since 2006). The weekly tests will give us a better picture. The doctor is not alarmed because the elevation is mild at this point. We will get the results of this weeks test either tomorrow or Monday.
 
T

Tom

New member
The doctor called about yesterday's recheck. My son's liver enzymes are back in the normal range. At this point we have no explanation. We will recheck in two weeks.
 
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Tom

New member
The doctor called about yesterday's recheck. My son's liver enzymes are back in the normal range. At this point we have no explanation. We will recheck in two weeks.
 
T

Tom

New member
We are relieved. Just have to wait for the next test to make sure that it continues.
Kalydeco is primarily metabolized by the liver.
 
T

Tom

New member
We are relieved. Just have to wait for the next test to make sure that it continues.
Kalydeco is primarily metabolized by the liver.
 
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