What classifies someone as a responder vs a... - PBC Foundation

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What classifies someone as a responder vs a non responder to UDCA medication?

mmihhih profile image
5 Replies

Is a responder someone who takes URSO for a specific amount of time and drops the ALP level within normal range?

Is a non responder someone who's ALP levels never go down or stay consistent?

What about partial responders? Those who ALP levels go down at first but go up in the course a few time. Flucuating ALP levels that never really meet normal ranges?

Read some articles out there that uses a lot of metrics but unsure where I stand. is Flucuating ALP levels normal? Does partial responses to UDCA have poor outcomes?

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mmihhih profile image
mmihhih
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Ballymahon2 profile image
Ballymahon2

My hepatologist told me i am a responder my alp is still high but it came down my hepatologist told me the alp may never come back to normal with pbc my hep sees me once a year i have been told to have a fibroscan before my next appointment in may 2020

kimphoebe profile image
kimphoebe

I’m classed as a nonreponder to uso because my alp stayed at around 200 for over a year and that’s why I’m on a clinical trial.

Andrei profile image
Andrei

responder is when your nr goes down .Not only alp: ast/ alt cholesterol etc are going down when urso is working and flush the liver so the inflamation si getting smaller

Andrei profile image
Andrei

in pbc our bile fluid is toxic for the liver and urso is increasing this fluid quantity.Like that the inflamation of the bile ducts is smaller and so we get a slow progresion

Candy12 profile image
Candy12

There are many metrics for assessment of your response to urso, not least those in the European guidelines that came out in 2017, which suggests that reaching an ALP within 1.67 x the upper limit of normal a good place to be and considered a response to urso. However it’s not a one size fits all, your other tests like bilirubin also figure in how well your doing, and I would think your base line numbers have some degree on where your numbers will be as well after a year on URSO. ( that’s the time they say it takes to decide)

Secondly ALP can fluctuate , mine was always between 170/180, within the above figure. My doctors didn’t react with the odd one over that as long as it stabilised. However, once there was a continued upward trend that’s when I was considered a partial responder/ non responder and I was started on fibrates, three weeks ago to see if that helps, yet my number is still only 214. With everything else within normal range.

Then throw progression into the mix, how can I respond for nine years then be said to be a non responder: Could this be that the disease activity has begun to out weigh the capabilities of URSO on its own as a treatment , rather than a clear terminology of non responder. All such a grey area, as normal the best person to guide you through the maze is your doctor. I’ve attached the pbc foundation lay version of the guidelines you may find useful. pbcfoundation.org.uk/upload...

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