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Ratatosk
08-22-2017, 11:45 AM
Recently switched DS to a new CF clinic after his doctor retired and one of the suggestions was to discontinue actigall. DS was put on it as an infant due to elevated liver levels when he was on TPN recovering from surgery due to meconium ileus. At the time the doctors indicated it was the norm to stay on it once prescribed and that it supposedly helped with potential gall bladder issues later on in life.

The new doctor indicated that clinics are moving away from prescribing actigall unless there are liver issues. DS is on orkambi and has had several liver function tests, which have come back normal.

kenna2
08-22-2017, 12:20 PM
This is what my doctors said as well. My liver function tests are normal now since I've been on Orkambi. They have left the option up to me if I wanted to stay on it or not. I agreed to stay on it because I'd rather be safe than sorry.

Aboveallislove
08-24-2017, 10:12 AM
Some thoughts...mostly questions I would ask the doctor to decide best course:
1) Is DS's situation different given he was on because of TPN and not CF per se?
2) If he discontinues how long would it take to know if liver enzymes are elevated? Can you do a serious of tests like once a week or more often to catch it if it becomes a problem and then further apart, like every month, then every three months?
3) Why are they moving off of it?
4) If livers go back up how quick would they and would it be a permanent damage/issue or just something to quickly address and no long term issue.

My gut would be there's a reason they are moving away and so long as they can monitor and it isn't permanent, I think I'd try UNLESS the TPN answer is it is a separate issue and he should always be on it.
Hugs and prayers.
Love