Anyone on Kalydeco seen changes in LFT's?

Havoc

New member
I'm just curious if anyone has seen changes in their ALT or AST levels after being on the medication for awhile.
 

Havoc

New member
I'm just curious if anyone has seen changes in their ALT or AST levels after being on the medication for awhile.
 
S

stranger

Guest
i thought i read somewhere that higher LFT's was one of the concerns during the trial(s) of 770(not a show-stopper, but something to be looked after). i can't seem to find where to give you empirical proof though. something like, increased visits to monitor liver functions. still looking for that link...
 
S

stranger

Guest
i thought i read somewhere that higher LFT's was one of the concerns during the trial(s) of 770(not a show-stopper, but something to be looked after). i can't seem to find where to give you empirical proof though. something like, increased visits to monitor liver functions. still looking for that link...
 

Havoc

New member
You are correct. There were indications that Kalydeco can potentially cause liver damage, which is why they recommend that AST and ALT be checked frequently, especially during the first year.

My question is, has anyone seen their enzymes elevate? Also, what are the implications of having to take a medication every 12 hours for the rest of your life that is potentially hepatotoxic? Will combination therapies compound this problem?
 

Havoc

New member
You are correct. There were indications that Kalydeco can potentially cause liver damage, which is why they recommend that AST and ALT be checked frequently, especially during the first year.

My question is, has anyone seen their enzymes elevate? Also, what are the implications of having to take a medication every 12 hours for the rest of your life that is potentially hepatotoxic? Will combination therapies compound this problem?
 
S

stranger

Guest
For my sake, are you asking if there was or are any absolute elevation or elevation into a dangerous area? It's me being curious more than anything else. Apologies if this should be obvious but it isn't to me.
 
S

stranger

Guest
For my sake, are you asking if there was or are any absolute elevation or elevation into a dangerous area? It's me being curious more than anything else. Apologies if this should be obvious but it isn't to me.
 

Havoc

New member
Yeah, I'm curious to see if anyone on it has had and elevated AST or ALT. It would have huge implications for the viability of the drug if patients had to eventually discontinue it due to elevated enzymes. Especially when you consider that many CF patients already have liver issues.
 

Havoc

New member
Yeah, I'm curious to see if anyone on it has had and elevated AST or ALT. It would have huge implications for the viability of the drug if patients had to eventually discontinue it due to elevated enzymes. Especially when you consider that many CF patients already have liver issues.
 
C

cindylou

Guest
I have been on it for 3 weeks. Before I started my liver enzymes were VERY elevated due to posaconazole (a few weeks before starting Kalydeco) and then still somewhat elevated due to beta-lactam IV antibiotics (a few days before starting Kalydeco). Because of that, my doctor wanted me to get them tested again after 2 weeks on the drug. Luckily, they are back into the normal range (woohoo!).

The standard is that once you start the drug you need to get quarterly LFTs for the first year and then yearly afterwards. Because my enzymes came down, I've been cleared to wait for another three months for my next test.

It was an issue in the study, but the impression I've had is that it wasn't so serious that they were taking people off of the drug. I have heard from a few people who had liver disease prior to starting Kalydeco and they have said that Kalydeco hasn't upped their liver enzymes any. So I'm at least HOPING that we won't all have to go off it 10 years from now due to liver disease!
 
C

cindylou

Guest
I have been on it for 3 weeks. Before I started my liver enzymes were VERY elevated due to posaconazole (a few weeks before starting Kalydeco) and then still somewhat elevated due to beta-lactam IV antibiotics (a few days before starting Kalydeco). Because of that, my doctor wanted me to get them tested again after 2 weeks on the drug. Luckily, they are back into the normal range (woohoo!).

The standard is that once you start the drug you need to get quarterly LFTs for the first year and then yearly afterwards. Because my enzymes came down, I've been cleared to wait for another three months for my next test.

It was an issue in the study, but the impression I've had is that it wasn't so serious that they were taking people off of the drug. I have heard from a few people who had liver disease prior to starting Kalydeco and they have said that Kalydeco hasn't upped their liver enzymes any. So I'm at least HOPING that we won't all have to go off it 10 years from now due to liver disease!
 
S

stranger

Guest
if on kalydeco you do less oral and less iv antibiotics, is that considered better for the liver? i guess i am trying to understand which problem i would rather have; liver concerns because of the types and levels of antibiotics i have to take for the infections OR liver concerns w kalydeco.
 
S

stranger

Guest
if on kalydeco you do less oral and less iv antibiotics, is that considered better for the liver? i guess i am trying to understand which problem i would rather have; liver concerns because of the types and levels of antibiotics i have to take for the infections OR liver concerns w kalydeco.
 

Havoc

New member
Well, first we need to see if it is a problem and if so, how bad. Certain cholesterol medications can cause liver problems, but not for everyone, which is why they monitor it. As Cindy mentioned, it's not so horrible that it was pulled from study. However, it bears watching and it may affect some patients. The other question is if 661 should pan out, are those of us that would need 2 medications at higher risk for liver complications?
 

Havoc

New member
Well, first we need to see if it is a problem and if so, how bad. Certain cholesterol medications can cause liver problems, but not for everyone, which is why they monitor it. As Cindy mentioned, it's not so horrible that it was pulled from study. However, it bears watching and it may affect some patients. The other question is if 661 should pan out, are those of us that would need 2 medications at higher risk for liver complications?
 
M

marcijo

Guest
I go in this week to get my liver test....crossing my fingers they are normal! They were normal before I started.
 
M

marcijo

Guest
I go in this week to get my liver test....crossing my fingers they are normal! They were normal before I started.
 
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