Sorry to hear your news

[LorraineLouise]

I was just wondering how long ago you were diagnosed?

and what your numbers were?

Stay strong in my thoughts and prayers.

You got this!!!

[Diane62]

I was diagnosed in 2008. My numbers then were less than 100. I'm doing extremely well even although I also have fibromyalgia and Sjögren's syndrome x

[Emer1986]

I was diagnosed dec16 at age 30. Came across pbc through routine bloods. No symptoms. Biopsy staged at stage 1. Numbers were in the 300s. Urso seems to be working positively with me. Trying to keep fit and strong to slow progression.

[butterflyEi]

Hi LorraineLouise

I was diagnosed 2006 never given my numbers. Only recently under the care of a new specialist and because of this forum have I asked for printouts of my results. Numbers are good even after 11 years of being diagnosed but almost certainly with hindsight know that I had symptoms at least 10 years before diagnosis date.

best wishes

[Hidden]

I was diagnosed in 2009, following routine tests for something else. I dont have those numbers but later as I learned about PBC I started to ask. My ALP fluctuates between 180 to 250 and consultant is happy with the level of stability.

[LorraineLouise]

Interesting how all of us have the same story. I was diagnosed eight months ago. It was during colon resection surgery (18 inches removed) that my surgeon saw the damage to my liver. He came out and told my family that the surgery went well but asked them how much I drink? They all laughed. As I have never been a drinker. In retrospect I have had the symptoms for probably 5 years before diagnosis. My numbers were in the 300's and now in the 150's. So the Urso is working. Although my numbers to creep up now and then for no apparent reason.

[Hidden in reply to LorraineLouise]

Why didn't you have a CBC before yur surgery? They would of seen the elevated enzymes

[Sachin1234 in reply to Hidden]

I think you mean cmp( comprehensive metabolic panel) which has liver enzymes test along with electrolytes test.

Cbc( complete blood count)

[Hidden in reply to Sachin1234]

You might be right. Thank you for clarifying. All this blood work is new to me. My doctors never really had to take my blood test to this extent.

[Sachin1234 in reply to Hidden]

Cmp, CBC and pt are important for pbcer. I do these test in every 3 months.

[Hidden in reply to Sachin1234]

Are you in America? I never asked the name of myblood test panel but since enzymes elevated I had quite a bit of blood draws. Sometimes up to 12 vials. I get my results and a print out too. I also have autoimmune hepatitis and I'm starting to develop the hell with it syndrome. I heard that there's no pill for that. I read in a Facebook group where a guy asked if we developed cursing more since diagnosis and stage 4

[Sachin1234 in reply to Hidden]

Yes,I live in Frankfort Kentucky.. so you have aih and pbc? Yes once you have auto immune disease you tend to have lots of others auto immune problem as well.. I have pbc, reactive hypoglycemia, hypothyroid and my be sojourn disease.. we have to fight to live a life 😔

[Hidden in reply to Sachin1234]

Or move to a death with dignity law

[Sachin1234 in reply to Hidden]

Lol.. where are you and when are you diagnosed?

[Hidden in reply to Sachin1234]

Been in Ca for the last 18 years and stuck in central Florida now. Got my enzyme elevationin late Jan of this year.

[Sachin1234 in reply to Hidden]

You should go back to Canada you will live more and happy 😊

[LorraineLouise in reply to Hidden]

There were very slightly elevated prior to surgery. My GP just dismissed it and gave me the ok to have surgery.

[Sachin1234]

I was diagnosed when I was 37. In the beginning my enzymes were as following:

Alt around 200, Ast around 120 and Alt around 130.

Frist they suspect Aih( autoimmune hepatitis) then they rule out aih and confirmed pbc.. as soon as I started urso my enzymes went down and now they are normal expect alp hover around high normal around 100 and 106..

My liver is stabilize but I'm having another autoimmune problems like reactive hypoglycemia, hypothyroid and may sojourn 😔

[Pamela4475 in reply to Sachin1234]

Me too but my immunologist said most all of the time if have one autoimmune illness will have more than one.... he also said 99% of thyroid is autoimmune

[CoCoMcD]

I am still waiting on diagnosis. My AMA tests came back positive at about 26. I just had my first liver biopsy yesterday, a transjugular( never again). My ALT and AST are around 80 since I started my Urso a few months ago. Before that they were at around 145. My ALP has been pretty normal or even low. Last count was 30. I'm 32 and I've been searching for diagnosis since my first elevated liver enzymes came back 4 years ago. It took switching doctors for them to act like maybe there was really something going on.

[kgohn]

Diagnosed 3 years ago at age 37. ALP was a whopping 1300, AST and ALT were in 90s. Diagnosed 3 months after birth of my 2nd child. No symptoms except some crazy heartburn postnatal (very normal pregnancy). Routine checks led to discovery of PBC. URSO brought ALP down to around 350. Now on Obeticholic Acid. ALP is now 224. Lowest in 3 years, but have progressed from stage 2 to 3/4 in the past 3 years. I feel fine right now and taking it all in stride because what else can you do. 😊

[Q8Cooper]

I was diagnosed 2012. Routine labs for liver b/c of a medicine I was on came back with Elevated LFT's. The initial diagnosis was NASH. I was morbidly obese. I had a bariatric bypass, during which I requested a liver biopsy (after all when could it be safer than having a bariatric/trauma surgeon at the helm). It came back PBC, NASH, AIH, Sarcoidosis, and granuloma's. Fortunately no cirrhosis. The good news is I did loose the weight and kept it off for the past five years for less wear and tear on the liver. The bad news is now I face more than one mal absorption issue.

I became rapidly very ill on the first Urso trial, waited a year and tried again and was a non responder. My doc didn't even want to risk steroids for AIH. Basically I had no treatment for five years. Without the option for medicine I took a holistic approach. I figured if I was to make it until another medical option was available I had to make some major life style changes. I educated myself on anti-inflammatory mostly plant foods (opposite of a bariatric diet), got as much rest as I could, spent as much time in nature (Colorado USA), and utilized therapy to teach me stress reduction. Two years ago I made the hardest decision and that was to end my career in finance (an extreme high stress job) at age 54, single and my only paycheck. I honestly thought about working myself into a dire need for a transplant and if I didn't get one.... well, no financial worries... Right?

Well common sense and love for my two sons and my two grand kids kicked in and I did what I had to until FDA approved Ocaliva. I was started six months ago. My Alp was 400 and it slowly declined to 223 (norm is below 110) in the first few months. At six months my LFT's are climbing again as well as my billi. We will see if medication continues to be an option. In the mean time I do the best I can to take care of my health in ways I have control of.

Many kudo's to everyone here fighting this battle. I find all the feedback helpful and informative, not to mention how wonderful everyone supports each other in this curious disease.

Blessings to all!

Kathy

[Sachin1234 in reply to Q8Cooper]

So what is your future plan?

[Q8Cooper]

Right now we only have a three month plan. Wait till December and draw bloods again and re-evaluate if we think the OCA is benefiting my case. I intend to ask my GI doc if the reason my LFT's are not going down is because we need to look at steroid treatment for the AIH as well before he gives up entirely on OCA as it is the only treatment option as well. My doctor has introduced the idea that I should consider the idea of not going the transplant road as he is not convinced the anti rejection drugs will work for me. So my long term plans are pretty much live and enjoy life in the present.