When to start meds?: How high do your akt... - PBC Foundation

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When to start meds?

Anitaray profile image
5 Replies

How high do your akt.phosphotates have to be before they start giving you meds? I was told that I would get medication when my test showed an elevated alph.phos. at 240. I am at 138 now.

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Anitaray profile image
Anitaray
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5 Replies
iagra profile image
iagra

Is your AMA positive? Did you have a liver biopsy to check if you have liver fabrosis, scarring? Do you even know for sure you have PBC? ALP 138 is fairly low. If you have no scarring in the liver, and no other symptoms, you may not need to start on URSO at this point. Just be followed up the the doctor and check your blood every 6 months or so. But, all these are questions to your doctor.

I didn't start on URSO, until my ALP reached 375 and GGT became elevated. This is when I was diagnosed with PBC. Prior to that, I had ALP hovering over the high limit at +20 - +40, similar to what you have now, for about 8 years.

Good luck!

Anitaray profile image
Anitaray in reply toiagra

I have positive AMA no biopsy just a scan and MRI. No scarring or inflation. Thanks

JoanCR profile image
JoanCR

My liver enzymes have all been normal and I was started on Urso right away, per two hepatologists. I'm in the early stages of PBC confirmed by a liver biopsy. Since Urso is meant to prevent damage, it makes sense to me to start it as soon as you know you have PBC.

ninjagirlwebb profile image
ninjagirlwebb in reply toJoanCR

I tend to agree with you.

Danteskid profile image
Danteskid

I would push to start it right away if you have been diagnosed with PBC. It will slow the progression...just my humble opinion!

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