2 Year Update PBC

Here's an update on how I am doing with PBC. It has been 2 years since I was diagnosed with PBC. Last year, I had no scarring and my inflammation was controlled through diet and Ursodiol. I was at stage 1, which is good. My liver specialist has been monitoring my blood work every 3 months and I have an MRI every 6 months.

A few months ago, I had my first episode of hepatic encephalopathy. I had some stress at work, but it wasn't awful. I had been drinking a beer or two at night after work, and I had a reasonable amount of meat and bread in my diet along with an occasional processed food, but nothing serious. My blood work had been so good for so long, I didn't think much of it. I'm still not convinced that it was enough to bring this on. I think it was PBC flaring up.

I went to the ER because I could not think. I don't know how else to describe it. I couldn't focus enough to pay attention to people talking to me. I could not understand anyone. I was having trouble forming sentences, and for some reason I thought someone might be out to get me, which is not normal for me at all. It got worse and I started acting bizzare, like closing my eyes when someone asked me a question and saying random things. I was making crazy jokes in the hospital when everyone else was very serious. They tested me for alcohol and all kinds of drugs, but the tests came back clean. The blood work showed that my ammonia levels were elevated, so they decided to keep me overnight. When the liver stops working, it can't filter ammonia out of the blood. My blood became toxic and it affected my brain. I completely lost touch with reality. It was terrifying. I spent over a week in the hospital, and it took a couple months after that for me to feel somewhat normal again.

My AST was 63 (normal is under 32) and my ALT was 143 (normal is under 33). Bilirubin was a little high at 1.5 (normal is under 1.2). Alkaline Phos was normal. I don't know what my ammonia level was; I did not get a copy of that one and I don't think it really matters now.

The doctors thought my behavior was more bizarre than could be explained by hepatic encephalopathy, so they sent me to a center for mental health. I was diagnosed with depression (which I have had all my life) with psychosis. I had never heard of psychosis before, so I thought they were saying that I was a psychopath! But that's a completely different thing. Evidently psychosis is not a disease, its an episode of acting bizarre. For some people it only happens once, for others it happens throughout their lifetime. So now I take an antidepressant and an antipsychotic. Its embarrassing and strange to me. My psychiatrist even said that he is surprised that I have this diagnosis because I seem to be a high-functioning person and one of his best patients. I asked if the antipsychotic was really necessary because it was probably hepatic encephalopathy. He said it was best because if I have another episode, it could be much worse without medication.

I met with my liver specialist this week and she said I have progressed to stage 4 cirrhosis. End stage liver disease. In two weeks she will put a scope down my throat to check for varices. There's not much else that can be done. I will continue with ursodiol, monitor my blood levels, and do an MRI every six months. I have also renewed my efforts to have a squeaky clean diet. I'm not addicted to alcohol, so its no problem for me to switch to sparkling water with lemon or fruit.

I asked if I will need a liver transplant, and the doctor said she didn't know, but if I do need one, she doesn't want me to worry because they work very well and we will cross that bridge if we come to it. She said if I do need a transplant it will be a decade or two from now.

So that's my update. I'll be 38 in November. When I am 58 (my mom's age), there is a good chance that I will need a liver transplant. Until then, I just have to be on the lookout for another episode of hepatic encephalopathy.

25 Replies

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  • Oh Chynablue,

    How scary. Girl you gotta stay on the straight and narrow OK? I'm exactly your moms age too. Lol.

    It's scary that you've advanced so quickly. I wonder why? I know we're all different and you got this at a young age. But it sounds like they have a game plan for you. Please keep us posted. Will they put you on Ocaliva as well as URSO? I didn't know a person could be in stage 4 cirrhosis for 20 years. Please speak to PBC Robert or others for their take of this prognosis. I wonder about your doctor and if they know exactly how to deal with PBC.

    Please take care ❤

    Stella

  • Chyneablue. Thinking or you. Agree with Ktitel. Get 2nd opinion

  • Hi Rockie! I remember you from before. I hope you are doing well

  • Chynablue. Thanks for remembering me. At the moment I go through a rough time with the itch and pain in my right side. I changed from Ursotan to Ursofalk and my body is battling to accept the new Urso. I had to do the change as the Ursofalk I get through Medical Aid and the Ursotan I have to pay myself and they are quite costly, especially for a pensioner. Hope you are doing better.Regards.

  • Hi Stella,

    Thanks for the kind words. I think a sudden worsening of symptoms is a PBC flare. I guess that's why I progressed so quickly?

    I looked up Ocaliva and it looks like it is used to bring down ALP levels, but mine are normal. So I'm not sure it would help me.

    Here is a link to cirrhosis staging patient.info/doctor/cirrhos... My Child-Pugh-Turcotte Score is 6, which gives me Class A with a life expectancy of 15-20 years. If anyone has any different information I'd like to read it.

  • Hi, so sorry for your horrid experience..must have been very scary. I had the same Childs Pugh score as you last year but was given 10 years or maybe more ...I then had a varice bleed out of the blue so not sure what my score is yet though bloods not too bad at present so maybe it is still OK. There is someone on this site that has had cirrhosis for 18 years but I cant recall who it is. Good luck

  • Quite a few had cirrhosis for years. How did she get diagnosed for stage 4

  • Not sure how she was diagnosed. I was diagnosed with very steep rise in LFTs over quite a short time and a fibroscan.

  • The doctor said that she would put me at a stage 4 based on the MRI imaging. She also had my blood test results and symptoms such as fatigue and hepatic encephalopathy.

  • I would throw a fit to be tested again for aih. I weak positive for both aih and pbc. Pbc barely showed up in my biopsy but not aih. Meanwhile my alt and ast was elevating and my alk was stabilizing. I was only taking urso. Then I started prednisone and got immediate results.

  • I think that's a good idea for me because I don't follow the normal PBC pattern. AIH overlap might explain it.

  • Hi chynablue

    Sorry to read of your problems but you sound so positive and pro active. It also seems that you have some good professionals around you and hopefully they will be able to keep a close eye on how things progress. I am not 100% but I am sure I read somewhere that with cirrhosis it is best to avoid foods with copper in them. Perhaps you could check this with your doctor.

    best wishes

  • Thanks for the tip, butterfly. I will look into it. I hope you are doing well!

  • Hello.Get second opinion.I also think that from stage 1 to 4 .....2 years is too fast.Something is not good in your treatment.Urso should slow down pbc....I had an uncle who past away from chirosis.From the first episode of encefalo he lived only 2 more years.Also in Pbc there is no such thing as alkaline ph normal nr.It should be higher.Maybe u do not have Pbc or you have but in combination with Aih or something else.Take care

  • I was thinking aih too. Her alt and ast was elevated

  • Thanks Andrei and Jenny. Is there a test for AIH?

  • Yes. It's smooth muscle aka. But with your alt elevated, I would think that your dr already ran that blood test. It can also be called asma blood test. It's not uncommon from what I read to have pbc and aih. I have both

  • Oh yes, now I remember. I was tested for that 2 years ago. It was negative. Maybe I should request that the test be repeated?

  • Do you remember what your numbers was

  • It was 19 units. Negative is 0-19, Weak Positive is 20-30.

  • I'm not sure if negative can turn into a positive but both my pbc and smooth muscle was weak positive. It showed up in my biopsy.

  • Sad to hear about the fast change of your sickness.

    MRI? What does MRI detect for PBC? You are the first I heard that got MRI, anyone else?

  • An MRI is a detailed 3-D imaging of the liver, bile ducts, and surrounding organs. It shows the size of the liver, nodules, cysts, fatty deposits, and changes in morphology indicating the presence of scar tissue. A contrast dye is injected through an IV to light up the vessels, which would show if there are blockages or abnormalities.

    I think in the UK they do ultrasounds and fibroscans instead.

  • Hi Chynablue,

    Based on you post few are the findings that will relieve you from Psychosis disorder.

    Take 1 to 4 grams of fish oil (Omega 3) supplements daily. Consult your doctor for proper dosage, especially if you are taking blood thinning medications, or medications for diabetes or cardiovascular disease.

    Include antioxidant-rich foods like blueberries, strawberries, lemons, oranges, Indian gooseberry (amla), spinach and carrots in your diet.

    You can also take multivitamins and vitamin supplements.

    Along with all do regular exercise, yoga, good sleep and meditation.

    For PBC continue with the drugs prescribed by your doctor. Get a diet plan from him. Avoid non veg food.

    Will help you for sure. You will get well soon.

  • Hello VickyVirdi,

    Thank you for your advice. I try to have a good diet high in antioxidants, and I get good sleep. I started taking a Triphala supplement after I got out of the hospital. It has amla in it, and I think it helps with detoxification.

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