still none the wiser

[Lena2011]

since 2021 I’ve had high liver levels starting from alt 800 odd alp 1300 had yellow eyes! They first said I had dilli from antibiotics I had taken for a skin infection, bloods started too improve but after a couple of months they started rising again sol Started me on urso February 2022 levels are dropping slowly but still high blood test this week showed alt 105 and alp 420 had consultant yesterday who started saying about biopsy’s again but then said he would wait until I had seen the liver clinic in kings collage which I was refurred too in 2023 who increased my urso dose from 900mg too 100mg!! I’m so scared urso just isn’t working for me and what damage is happening I’m only 37 and have 3 young children too care for feel like I never get a strate answer when I see someone I feel like I’m back and fourth!

[DonnaBoll Administrator]

Hi! First of all, take a breath. You're ok. I'm sorry, from what i read, that you weren't started on Urso as soon as the diagnosis was made. If your Alk Phos started at 800 and now is 420, it sounds like numbers are going, at least, in the right direction. First of all make sure you are onthe right dose. Your dose is never based on symtoms or lab results - ALWAYS and only your body weight. Earlier today I posted the link to the Urso calculator from The PBC Foundation. Please take a look. Being on the right dose is so important to make sure you are giving your liver and bile ducts every chance to maintain their function. Why would they even consider another biopsy is a question I would certainly ask him. What additional information would it give them and how would it change the treatment????? These are 2 of the questions wse need to ask. It wouldn't.. you would still be on Urso. You have every right to ask a doctor why he is suggesting a certain treatment. Being our own advocate is necessary to make sure we are all getting the care we deserve - and need. Please reach out with any questions. PBC can be very scary but knowing all you can is so important. I hope you go to The PBC Foundation for all of their wonderful patient friendly information. Joining The Foundation will be so helpful to you.

[Lena2011 in reply to DonnaBoll]

Thank you for your reply, yes I’m on the max dose of urso have been for 1 year now and all still at 405!!! He said I need too be refured too liver unit as he thinks I should have second line treatment I’m so scared seeing as you read your chances are much better if you respond too first line treatment, my anxiety is through the roof! Thank you I’ve just downloaded the pbc app!

[DonnaBoll Administrator in reply to Lena2011]

take another breath, Lena2011........ I do know how scary PBC can be when your numbers are coming down. I've been exactly where you are right now. When someone is diagnosed early in the disease process, their chances of the Urso 'working' is better but certainly not guaranteed. People can respond to this drug at any age though. Give some thought to the fact that we even have a second line of drug treatment. When my numbers didn't respond back in 2005, there was nothing else to take besides Urso. Do you live in the states? Many patients who aren't Urso responders do well taking fenofibrates. Ocaliva is another drug option that is available as well. So glad you've downloaded the PBC app. Belonging to the Foundation will give you a wealth of information and support for sure. Please let me know if I can help in any way. You have options..... make sure you explore all of these with the liver specialist who knows how to treat PBC. Take that breath....