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View Full Version : Kalydeco - liver enzymes are elevated *UPDATE*



Tom
05-15-2012, 09:49 PM
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?

Tom
05-15-2012, 09:49 PM
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?

Tom
05-15-2012, 10:04 PM
Forgot to mention that they are 2x upper normal limit.

Tom
05-15-2012, 10:04 PM
Forgot to mention that they are 2x upper normal limit.

Havoc
05-17-2012, 01:02 AM
Bummer. I was wondering if that was gonna be a problem for some people.

Havoc
05-17-2012, 01:02 AM
Bummer. I was wondering if that was gonna be a problem for some people.

Tom
05-17-2012, 01:42 AM
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.

Tom
05-17-2012, 01:42 AM
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.

Incomudrox
05-17-2012, 01:48 AM
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.

Incomudrox
05-17-2012, 01:48 AM
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.

TreasureGoddess
05-17-2012, 11:44 AM
Tom, were your son's liver numbers bad before beginning or did kalydeco bring on the first issues with liver problems?

TreasureGoddess
05-17-2012, 11:44 AM
Tom, were your son's liver numbers bad before beginning or did kalydeco bring on the first issues with liver problems?

Tom
05-17-2012, 12:10 PM
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.

Tom
05-17-2012, 12:10 PM
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.

Tom
05-17-2012, 06:33 PM
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.

Tom
05-17-2012, 06:33 PM
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.

Rebjane
05-17-2012, 06:39 PM
Tom,

That's great! Is Kalydeco metabolized by the liver?

Rebjane
05-17-2012, 06:39 PM
Tom,

That's great! Is Kalydeco metabolized by the liver?

Tom
05-18-2012, 09:43 AM
We are relieved. Just have to wait for the next test to make sure that it continues.
Kalydeco is primarily metabolized by the liver.

Tom
05-18-2012, 09:43 AM
We are relieved. Just have to wait for the next test to make sure that it continues.
Kalydeco is primarily metabolized by the liver.

TreasureGoddess
05-18-2012, 12:26 PM
Excellent news! Glad your son's levels are back in a good range. You may want to ask your doctor about going back on ursodial. I have been told that it helps the liver function and even when levels are normal it's good to keep going....not sure about that as if you don't need a med, it's sure nice to be able to stop one of the bajillions our kids have to take.

TreasureGoddess
05-18-2012, 12:26 PM
Excellent news! Glad your son's levels are back in a good range. You may want to ask your doctor about going back on ursodial. I have been told that it helps the liver function and even when levels are normal it's good to keep going....not sure about that as if you don't need a med, it's sure nice to be able to stop one of the bajillions our kids have to take.

Tom
05-18-2012, 02:14 PM
Our doc did discuss Urso again, but as of right now he is not going back on it. At this point, my son is only taking Kalydeco and enzymes. All other CF meds are not being prescribed unless needed (Pulmozyme, hypertonic saline, antibiotics, etc).

Tom
05-18-2012, 02:14 PM
Our doc did discuss Urso again, but as of right now he is not going back on it. At this point, my son is only taking Kalydeco and enzymes. All other CF meds are not being prescribed unless needed (Pulmozyme, hypertonic saline, antibiotics, etc).

cabgodfrey
05-29-2012, 04:37 PM
Is there any discussion of not needing to take enzymes? Has digestion improved with Kalydeco?

trw144
05-29-2012, 07:49 PM
Also bare in mind that dosing was split between 3 groups (200,400,600mg) and in the conference call they said the 600mg dose had "a more consistent and more robust effect as compared to other doses". This is where I see the main hope in the results.