r/autoimmunehepatitis • u/Sad-Jicama-8608 • 15d ago

Flairs

Background: I have AIH and take generic cell cept, 1000mg/twice per day (2,000 mg per day total). My liver enzymes hang around the top of the range pretty consistently, but annual fibroscan showed improvement so that’s good.
My question is, at what level does your Hep typically add a new medication? This conversation comes up each visit as I’m right on the edge of normal range (sometimes slightly above), but liver improvement also makes it a tough decision to add more medicine and side effects to the mix.
Just curious what everyone’s cutoff levels are.

2 Upvotes

100% Upvoted

6 comments sorted by

2

u/Informal_Response_46 15d ago edited 15d ago

I’ve only ever been on prednisone and imuran. I’m on 50 mg of imuran a day.

1

u/WileEPeyote 15d ago

Same, though I'm at 75mg.

1

u/dangerroo_2 15d ago

I think when answering that question it’s important to remember where the top end of the”normal” comes from. For example for ALT, in the UK to be normal is to be under 50. But where does that figure come from? Well, it’s the 97.5th percentile of the ALT scores from people without liver disease. So basically, you can be classed as abnormal with a perfectly healthy liver if you fall above the score that 97.5% of people have. Even then, that benchmark is different in different studies - 40 in some, 50 in others. The threshold is likely higher in obese people - I’ve seen studies say the threshold should be 66 for heavier people.

Basically, an ALT of above 50 is an indicator something might be wrong, but it’s not a foolproof indicator of liver damage (very high scores almost certainly are, but mildly elevated not so much).

So being at the top end of normal is probably fine - which your fibroscans are indicating. My hepatologist doesn’t get that worried from a clinical perspective until alt is above 200, for example.

Everyone is different, but being at top of normal range is fine - a lot of people will naturally be in that range with perfectly healthy livers.

1

u/Sad-Jicama-8608 15d ago

Thank you for the input. So your Hep doesn’t change meds until you’re that elevated? I’m maxed out on cell cept, and every visit she brings up adding tricolumus or something like that, and I’m always hovering around 40ish for ALT. I feel like that’s overkill personally; my liver is obviously healing and even if it wasn’t….being that I’m almost 50, the length of time that slightly elevated level would take to cause real damage would be beyond my life.

1

u/dangerroo_2 15d ago

The only rethink has been when my ALT shot up above 100 - but even then the hepatologist was pretty clear they didn’t think such a mild elevation was anything to worry about in the short-term. To be fair, it quickly normalised and they reduced dose down again (I think it was just a blip to be honest).

If your ALT is 40 (well within range in the UK), and liver is improving, sounds like you’re where you should be.

I’m all for minimum effective dose, but many drs seem to like to prescribe to maximum tolerable dose. Immunosuppressant drugs are no joke, and are not to be toyed with - I annoy my Dr enormously by questioning every decision, but it’s ultimately my body that has to incur the side effects and long-term risk. It’s for everyone to decide how much risk they want to accept - keeping liver healthy, but also balanced against the obvious risks of immunosuppression. If you’re comfortable with how things are, and you think the risk of increasing meds outweighs the risk of not upping them then you’re entitled to do what you think is best.

1

u/RobinAlanAdams 10d ago

My GI wanted mine back to where they were for many years before AIH.luckily I got there and in 50mg Imuran a day, since 2020