New to PBC and terrified

Has anyone out there been diagnosed with PBC when they were already at the cirrhosis stage? If so, has the Ursidol worked for you? I've just been diagnosed and had my liver biopsy 2 days ago. I'm 62 years young. I am really freaking out. They are saying I have had it for quite some time. If anyone has any advice it would be greatly appreciated.

-Pam

35 Replies

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  • hi pam. It is a scary time when you first find out. Especially if you've been googling for answers. I would recommend joining the pbc foundation. Link can be found at top of this page. There are done great leaflets and a monthly magazine which can tell you all you need to know. And you can phone or email any questions there too.

    I don't know about about staging at diagnosis - I've been diagnosed 3 months now and won't know what stage I'm at till august. But its better to stay optimistic stress makes everything worse. So be kind to yourself and take it a step at a time.

    best wishes

  • Well I'll send a prayer up for you that your has not got as bad as mine. I'm trying to be calm and happy but I start to get obsessed about it. I really need to be able to put it in a place and move on with my life. Thanks for your reply.

    -Pam

  • thank you. It's a lot to take in and its hard to adjust to the unknown isn't it? I Hope you find the answers your looking for - there's loads of info on here too.

  • Are you already in cirrhosis my friend? There's quite a few of us here that are already in Cirrhosis

    I'm hoping that I'm not. The lab that did my biopsy refuses to turn it over to the Mayo Clinic for a second opinion and the Mayo Clinic won't give me another biopsy

    I'm going to start raising a little hell for my biopsy to be turned over to the Mayo Clinic. They treated me so poorly at the lab. They smashed my biopsy on the counter and oh well. It is what it is. I'm going to have to be my own advocate for my health. I am beat up and tired badly. I have no one

    You will be ok if you give up sugar and never drink one sip of alcohol again. I believe in diet and exercise and happy 😊 ness.

  • Thanks for your reply. I have given up alchohol. I try to be careful about the sugar but honestly, I am no saint in that department. Haha! I do get a sweet tooth after dinner.

    -Pam

  • Pam tonight others that are in yur stage will join in. There is a lady in Australia that is stage 4. She seems to be fine. Do you mind sharing your story about yur symptoms and how you were diagnosed?

    For me it is as a routine blood test

  • I went to the doctor in February because I had some issues with my stomach. I thought it was an ulcer but the doctor thought it could be my gall bladder. She sent me for an ultra sound a day or 2 later. She called me before I left the hospital and asked me to stay for a CT scan. She called that evening and said I had cirrhosis and also a large hernia that pushed through the diaphragm and was pressing my stomach into my lungs. Then she sent me for more blood tests and when they came back my LFT's had gone down a little. Then in a week or 2 I went back for more blood tests and they had gone up. She then sent me to the GI and they sent me for an endoscopy. They did some biopsies and they came back clear. That doctor said he did not see anything bad no varices but that my liver looked a little blue like it might want to turn and come back yearly for an endoscopy. Last week I had another visit with the GI and they said I had the AMA'S and also elevated liver enzymes. 3days ago I went in for my liver biopsy. I have not heard the results of that yet. Should hear today or Monday. But in the meantime I had a call from the GI saying when they confirm the biopsy I will get started on the Ursidol. And also that my amonia level are a llittle high and should take Lactalose. I am really bummed about that. It just about sent me over the edge but I am so stressed out right now. I am really worried this is going to destroy my happiness. I guess the good news was my platelets were normal. My liver is compensating. Anyway, that's where I am today.

    -Pam

  • Pam what country are you in

    Why do you believe that you're stage 4?

    I know how scary this is.

    I have to go through a divorce and I'm 💯 % financially dependent on my husband

    I got dressed today and put makeup on to go job hunting

    Wouldn't you know it

    My hands are shaking so badly from the prednisone

    I decided to sit in the couch for a minute

    That turned into a nap.

    You are in pretty good shape

    Even if you are stage 4

    You are not have serious pain

    Or are you

    Let's just get you through the anxiety of the biopsy

    Are you married or do you have family support

  • No,I am not having any pain. I am in the U.S. Colorado. I think I am at the cirrhosis stage as they already say I have it.No itching either but I do feel tired a lot.

  • I am married. 37 years. 4 grown children. 1grandson

  • There's fibrosis too. How can they say that you have cirrhosis without the biopsy.

    I'm in Florida.

    Do you have family support

    Turn to a dog or pet if you don't have human companionship for support.

    I have no one but my support groups. This is it for me

    No friends, no family

    No one.

    It's terrifying absolutely terrifying

  • I don't know . How they determine cirrhosis. I guess from the blood tests and the ultra sound.

  • You really need to wait for the pros to come on board and answer your questions. I had ct scans with and without contrast, and MRI and ultrasounds and a lot of blood work. It's all bull shit stuff. Nothing showed anything till the biopsy came in. And even the biopsy is a crap shoot. youre very lucky to have your husbandand children. Did you join the pbc foundation. They will answer yur questions fast. What is your liver enzymes

  • Yes. It turns out it's fibrosis and not cirrhosis. But now they have added auto immune hepatitis.

  • It's going to be ok. You'll see. Live your life and make diet changes.Like more liver friendly veggies and no more frozen food. That part was hard for me. My husbandjuiced fresh liver friendly veggies for me. But now I have to learn myself. I refuse to drink anything but coffee, tea, green tea water and sometimes I will squeeze lemon.

  • Can you explain why someone with PBC should not have "frozen food?" I'm a bit confused on that one....

  • I'm sorry I should of said preboxed with all the preservatives to keep it fresh. Msg is really not good for us. I was really surprised to see soy and soy on the list. But really I am choosingto change my diet. My gi dr told me I can eat what I want when the dr at the Mayo Clinic said something different.Both Dr agreed no alcohol. That's fine by me. I'm trying to eat as much fresh as I can. From what I'm reading lots of people don't believe that diet change is even necessary it's up to you.

  • Ok, thanks Jenny! I've been craving ice cream and was like "Noooo!!" Lol

    I've been on a mostly "raw food diet" for a couple months now...all processed foods mostly eliminated from my diet...

  • We bought a juicer and a icecreammaker. If you want ice cream you can make your own icecrea that way you get to control what goes in it. You still have to live.

  • Oh, and diet change is absolutely necessary...people are just sticking their heads in the sand if they think it's not!

    I've studied this in college and most all diseases are related to and or affecteted by diet...

    I'm almost certain it was some "preservative" that was my environmental trigger for this disease...coupled with extreme stress and genetic factors about 20 years ago...

  • Sugar and cabs is the hardest part for most of us. It's a proven fact that women need our chocolate 🍫.

    I know that I'm going to have sugar so what I do is give it up somewhere else. Like I know that I need sugar in my coffee so I give it up in my oatmeal. Give and take. Drink plenty of water and wait for the more experienced pbcers to pipe in.

    I'm newly diagnosed. With pbc and aih.

  • 4pjx I agree with you., The sugar I find is not so bad for me, for which I am grateful, but fatty foods and alcohol definitely a no go. Try and avoid stress. Accept your condition, because it is not going to go away ever, unless you go for liver transplant. I am 76. Have my bad days and better days. Just so blessed that I only found out about this PBC at the age of 68. I feel sorry for the young people.

  • Thank you Rockie. I am working on accepting this. I too am glad I am not young. Right this moment I think I am going to be okay. How I'll feel about it in an hour is questionable! Haha!

  • Hi there,

    I agree with you in that not to drink a sip of alcohol (pure sugar). In my case I have never drank alcohol ever. My condition seemingly has been caused by diabetes (I am not overweight, just a light-weight) and I have a fatty liver (Non Alcoholic Liver Disease), so my rationale has been to cut down on sugar generally but this has proved very difficult as I do succomb to sweets, chocolate, cakes! I do put much of the issue down to lack of exercise - have never been into doing long walks, I drive everywhere, so I think it is a lifestyle issue.

    Regards

    YummyBear

  • Hi 4 pjx

    I'm new to this too , I was officially diagnosed in Feb this year with PBC as far as I know I am not yet at a stage , like yourself my consultant said I have had this for sometime !! Shocked , confused is an understatement as I never had any reason to think that I had this ,

    I went to my gp in oct/Nov last year with a totally unrelated problem , she requested I had a blood test the following day , it was the following day my results came back with elevated ama levels and the imflammortry markers were raised which in simple terms was an infection somewhere , and that I was to have repeated bloods done in a weeks time , that week went and the following arrived and again they came back even more higher than before , by now I was stressing and lost a lot of sleep.

    Once I saw the gp on getting the results and him suggesting what could be wrong I done the worse thing possible ..... yes you probably guessed ,, GOOGLED IT"!!!

    Oh my what had I done ,, it petrified the pants off of me .. my gp ordered an ultra sound by now we are talking it's Christmas time , I had the scan done and obviously had to wait for results .

    I was then referred to a hepatology clinic and was fortunate to be given a good consultant , he explained to me what my results were insinuating and that I was to have further tests etc , these tests were more scans , one c.t scan where I had a contrast put in vein and I had a fibro scan which is a painless procedure . Less invasive , and stress less for me (biopsy) he then discussed that I would be put on urso .. I was to start off with 1 x 250 mg a day for 4 weeks then increase it to 500mg the following month . Then increase again . . And fineally again when I'll be on 1000mg a day .. I also have a dialated bile duct which he wanted to see if it is tied up with PBC or weather it's just in my "make up" this resulted in another scan , I'm awaiting the outcome of those results ,

    The thing I am struggling with is the itching and heart burn (acid) but I use calamine for my skin when it's really bad .

    I joined this forum and so glad I did ,

    We are all different and all at different stages , like I said I am unsure what stage I'm at but probably will find out in oct when I see my consultant again .

    I wish you well , and if you ever feel you need a chat just contact anyone on here as everyone will always listen and understand what your feeling . I'm just coming out of a low time as I can't get my head around it still , but you take each day as it comes , each day is a challenge , and we have to learn how to live with the cards we have been dealt .

    Take care and you know where we are 😊

  • Thanks for your reply and best wishes to you!

  • Hi4pjx. I have never been interested to know what stage I am. Cannot see that it would have made a difference to me. For me the itching is the worst of this decease. Luckily, I am not suffering much from fatique

  • Hi Rebecca, what's your AMA M2 and ALP level? What size is your bile duct? Do you still have your gallbladder?

    Mine bile duct is dilated too but my doctor said it is due to gallbladder surgery.

    I am not on Urso yet because my ALP is not elevated.

    -Jane

  • Hi Jane

    I can't remember off the top of my head what the exact levels are , haven't been told yet how wide the duct is but will find out when I see consultant , I just had letter this morning from him saying it was quite significant but wasn't to worry and will discuss in his clinic , yes I still have my gall bladder . When I saw consultant in clinic in February he said that I was being put on urso depending what the biopsy results are , I started urso on the 12/4/17 which was 1x 250 mg daily then increase it to 2x 250 mg 4 weeks later , then increase again in another 4 weeks to 750 mg and then increase to 1000mg 4 weeks later , I increased this week which was the 10/5/17 and boy do I know about it !! I know it's early days and have to persevere but it's not pleasant ,

    All I know is that they say I have had this condition for a while , I'm a non drinker , but do take strong pain killers for another condition, because I have been on the medication for a very long time I am leaning towards the fact that it's contributed to PBC ,

    As soon as I find my results I will let you know

    Thank you , wishing you well 😊

  • I have. I am stage 4 Cirrhosis, I have PBC and I just found out I have Grade 1 Esophageal Varices. I found out in February I think, I am confused today. I Started Urso and my liver seems to not feel as "sore" as it did. Good Luck!!

  • Hello, I'm curious how you would describe your "sore" liver. At times I have a feeling of intense heat in my back/flank area that goes away when I put an ice pack on it.

  • It feels sore like a sore muscle feels. It lately has been in my back, last couple of days. I hope this helps.

  • So you feel like the Ursidol is working for you? Please keep us posted about that. It will give us hope. Best wishes and stay strong.

  • Yes I do!! Ok I will!

  • And thank you!! Best wishes to you to!!

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