Diagnosed today with PBC

[SharonM69]

I was diagnosed with pbc today, they have caught it early by chance. As went to doc for something else. I don't have any symptoms yet. I have been given Ursofalk. Will this halt the disease so that I won't get any symptoms or will the symptoms come in time. I feel great at the moment I'm worried that won't last. The doc told me I don't have give up alcohol or go in a low fat diet which has pleased me. I'm also a bit worried about side effects from the drugs. I have to take 1500mg a day.

[Ktltel]

Hi shazm69 and welcome,

I was where you are about a year ago... For me it was in Sept. 2016

PBC is slow going. URSO will slow it down even more. Everyone is different but, one thing seems to hold true... If you have 1 autoimmune disease, others may surface. Maybe they're already there. Because of that I'd still try to eat right, cut out or really limit alcohol, high fat or fried foods, and processed foods and simple carbs as well as sugar and salt. I know it's a lot... Just try to do without some of those a little at a time. You'll feel even better and lose a few pounds too.

It's great they found it early! Is your doctor a GI or a hepatologist? I ask because some GI's aren't real familiar with PBC and don't require their patients to do anything when their first diagnosed. In reality "anything" we can do to help our immune systems and livers is a plus!!

I Googled liver friendly foods and started eating more of those as well as cutting out food or drinks that could compromise my liver.

Because you're in early stage PBC you have the luxury (so to speak) of taking baby steps to pampering your liver and to building up your immune system. I was told building up ones immune system could "level it out", turn things around or at least keep PBC progression away for a really really long time. Here's hoping right? ☺

Anyway, welcome to this site. Lots of great women and a few men too that are ready to answer any questions you have and also share some advice too. ❤

Stella

DX PBC 10/16

DX RA 4/17

DX Tendinitis 7/17

[SharonM69 in reply to Ktltel]

Thanks for reply. I am dieting at the moment. I don't really drink, but if I was told I couldn't do these things again it would make me feel worse if you know what I mean. So what I need to know really is what will happen in the future? Will the drugs slow it of halt it? The doctor is a hepotologist.

[Ktltel in reply to SharonM69]

Yep, that's what URSO does. It slows the progression of this disease way down👍. As far as halting it completely..... I don't know about that, only what I mentioned about building up your immune system and really "babying your liver" from anything that could compromise it further.

There are some on here who have an occasional drink etc. I for myself just chose to attack this AI head on and cut stuff out. I have my one year CT scan in Nov.

Stella ❤

[Oidra]

I was diagnosed the same way 17 years ago. I take Ursofalk, eat sensibly, walk every day and live a normal life. No one can say what our future will be , we are so very different, so why worry about something that may not happen. Listen to ( and take) the advice of your specialist and as you are feeling well, relax and enjoy every day.

[SharonM69]

Thank you so much. That gives me hope. I can sleep better now after reading that xx

[Chrissy64]

Urso will not "cure" PBC but in a lot of people it will slow it down enough so that you can live a normal lifespan and die with PBC not because of it. If you do develop symptoms dont panic. Dr told me developing symptoms has nothing to do wi th progression. I was diagnosed 6 months ago. Stage 1 grade 2..I was told it takes about a year to determine if the Urso is working. Hope this helps ease your mind

[gwillistexas in reply to Chrissy64]

Agree. My fibroscan is September 24th. GI says will repeat in one year to check status.

[liver-bird]

Welcome to the PBC club. You will receive support and understanding from this group so stay in touch.

It is wise to avoid or limit alcohol and fatty food to take pressure off your liver - most of us do this.

Join the PBC foundation as they will give you accurate and up to date information about the condition.

Do all this and then have FUN and enjoy your life. Big hug. Diane

[SharonM69]

Thank you. I will join as the specialist didn't tell me much. He said my liver is functioning normally at the moment. I am having a fibroscan soon, he's started me on ursofalk 1 pill a day for a month 2 the next and so on until I'm on 6 a day. I am already running to the toilet 5 times a day since starting them, so God help me when I'm taking 6 a day.