Update - ALT Results

[Ratatosk]

DS has been on Symdeko for about a year and last winter his ALT was elevated. While he was on Orkambi, he had liver function tests every few months the first year, which were normal. Apparently doctors aren't concerned unless it's double the high range and I guess we'd heard/thought Symdeko had less of an affect on the liver compared with Orkambi.

Since he'd been doing so well on Orkambi and Symdeko, his doctors began to remove meds he'd been on for years -- prophylactic antibiotics, one of his bronchodilators, actigal/urisidiol...

So when they retested him in June it was still elevated, we asked that he resume Actigall. Test results for ALT and Bilirubin were normal. So despite doctors being eager to peel away the number of meds he's taking, we're perfectly fine with him taking a few extra pills a day if it keeps his liver healthy.​

 

[kenna2]

So just wanted to give you an FYI. I take Symdeko and actigal too. I and some other CFers have had increased liver test being on it. We now have been instructed to only take the morning dose of Symdeko. The night time dose is basically just a booster of ivacaftor. Doctors and researchers have kind of found out that our livers have been holding on to too much of the ivacaftor and not getting rid of it quick enough which has caused issues. Our numbers have returned back to a normal range and our lung functions have been stable just taking the morning dose. Not sure if they've discussed this with you but something to think about.

 

[Ratatosk]

Interesting... They indicated they (vertex) didn't consider the elevated liver enzymes (ALT) a concern or reportable until they reached 3 times the normal rate. DS' results had doubled, but weren't quite double the normal rate. Usually his are upper 20s, high being 55. His elevated were 89 and 65. They dropped back down to 29.

I'll be curious regarding the triple combo results....