Hello. On diagnosis trail-live in the US


I haven't been definitively diagnosed yet, but my alk phos is high, GGT is high and I am AMA positive.

Just looking for some support here. I know that this is in the UK, but our medical treatments for PBC are similar.

I am mostly asymptomatic, I have some fatigue and some tenderness on my right side. I am undergoing an ultrasound next week and more blood testing to confirm

Feeling a little low right now and need a little shot in the arm

26 Replies

  • Hi Notor , Im in Canada and in pretty much same situation ( mostly asymptomatic , blood test not high but increased and AMA+) . I'm going to see hepatologist tomorrow for final Dg but my biopsy comes as stage 2 PBC so it will not be big surprise tomorrow .So so scared and don't know how to cope with that. Does anybody knows how long it takes from stage to stage ???

  • There are no timings from stage to stage, I am sure, as everyone is different. You may well stay on Stage 2 for the rest of your life and never progress. Please keep your spirits up, don't let PBC rule your days and life. Sending hugs )))((( x x

  • My mom was in a stage for over 18 years, nearly 20 She died of something else, but she was able to stop going to the GI at all, because her bloodwork was so stable.

  • I agree with this I have been stage 2-3 for five yrs since diagnosis.

  • Hi from The UK! :) Remember these words "Most people who have PBC die WITH the illness, not FROM it". Professor James Neuberger from Birmingham Queen Elizabeth Hospital Liver Unit said those words to me when I was diagnosed 10 years ago and now, that is my mantra :D. Most of us have a higher probability of being squished by a bus, PBC is not necessarily a death sentence and your life does not have to come to a stop. Remember, your glass is always half full, not half empty. I have heard some people on here say they no longer do this or that, or eat this or that? WHY?????? Life is for living, so let's live it!! :) Your journey won't be as difficult as you think. All the very best to you x

  • I totally agree louwooda. You should enjoy life . Do what you can when you can x

  • Thank you for replying to this , yours words certainly help me, newly diagnosed and a bit scared, but you are right and I am going to live my life to the full

  • It is normal to be scared. You should not stop living. Some of us do feel better eating a diet that helps the bloat and brain fog. I feel better and live happier doing so. It's not difficult a way of life for me is vegetarian.

  • Just remember, no alcohol and with any luck you will be fine.

  • Even alcohol has absolutely nothing to do with PBC, in moderation it is fine x

  • I agree..i asked my hepatplogist this the other day again.. And he said as I'm in early stages (ie no liver damage) I can drink within the recommended guidelines.. In fact I do just that, take my urso and my levels have improved from 1100± alk phosphate to 105 in 6 months..

  • Wow, I haven't met someone with Alk Phos more than mine :)

  • I seldom drink, as it seems to bother me now more than it did. I get headaches easily with it. I enjoyed a nice whiskey once in a while with my coffee, but I seem to stay away from it now.

  • Thanks everyone for your response. I suffer somewhat from health anxiety due to years of dealing with my mother's illness' as a child and as a young adult. So now that something is happening to me, I'm feeling somewhat defeated and depressed. I know they are testing me for other things, but I am 99% sure I have PBC. I have thought this all along, but was hoping I didn't. My mom's PBC remained in her stage for 20 years when she was taken with another disease. I feel like I can't talk to anyone much other than my husband, but I dont' want to depress him. Right now, I feel ok, but low and anxious about my appointments coming next week. I dont' have children but I work as a bank manager and have a fairly stressful job. I don't want to stop working, but I see that is sometimes necessary for some folks with this. Have any of you had to stop work? I really can't afford to stop working and lose my insurance. My husband has insurance, but he makes half of what I do in income.

    I know my prognosis is probably pretty good and once I can get on some meds, I could be in this stage the rest of my life, but I'm still pretty scared. I've had high ALK phos for over 2 years and nobody would listen to me. Now its super high (500) and my ggt was 553. Bilirubin is normal though as is Albumin. I don't know my IgT levels yet. I really would prefer not to have a biopsy if they confirm pretty sure by blood tests, but I guess I would like to know my stage for sure.

    Thanks again.

  • You came to the right place. This forum offers help and support in oodles, so you need not feel that you can only talk to your Husband. Sometimes it's better to talk to strangers without a face, as you can ask questions and say things on here that you may feel uncomfortable about saying to a loved one. Remember, you are not alone, all of us here have PBC. With regards to working, whilst you are up to it and need the income and insurance, continue to do so. I work as a Finance Officer in a School. I do have days where I am soooo tired that my bed calls me, so on those days I just have a cup of tea and a couple of hours sleep when I get home, then have a takeaway for evening meal, or Hubby does something quick like tinned soup or baked beans on toast. It's all about not stretching yourself too thin. Look at working as a means of being able to afford treats now and again, like holidays (vacations) or a new pair of shoes :) not a chore. Keep positive and this forum can be a lifeline for you. We are all in the same boat, you are not alone. Hugs x

  • Hi there, I also live in the us. I was diagnosed with PBC in 95 and going strong. When I was first diagnosed in 95 I asked my doctor if I was going to die from this disease and his answer to me was you are going to die someday but not from this. He was such a wonderful doctor. The itch and the fatigue is awful but once your on the medication it will subside. Have them check your thyroid because PBC and a thyroid disease are like brother and sister. They go together. And have them check your cholesterol. This disease gives very high numbers. My # was over 300 and they put me on Crestor and went down to 154. I do have the beginning stage of cirrhosis and there is nothing they can do about that but this kind of cirrhosis is slow. I am checked very closely by the doctors. Why I'm telling you all this, because I'm still here and kicking and enjoying my life and don't worry about things that you can't control. Just make sure you have a good doctor who cares about you and shows it. Very important. Enjoy your life.

  • I absolutely agree! :)

  • Thanks susan! My mom was diagnosed when you were. She had a goiter, and with her cancer history they removed her thyroid. She then contracted MSA (multiple systems atrophy) that eventually took her. Her liver was doing ok at the time. It was one of the few things that was ok, actually. I think she had some minor damage on her liver when was diagnosed. It was a long time ago though and I can't recall it all. I find that work sometimes totally takes it out of me and I have to nap, or not do anything on the weekend. I have a very understanding and self sufficient husband who will do what he needs.

    I am concerned about my Dad having to deal with me having a disease too, he has gone through so much. I prefer to talk to strangers about this stuff. Thanks again.

  • I hope I helped you. When your tiered just Close your eyes and take a cat nap. You can't fight it just do what your body tells you. And as far as your father goes maybe it's best that you not say anything. There is nothing he can do for you and he'll just worry. When in doubt do nothing. You'll be fine, really.

  • This was several years after her liver diagnosis though

  • Just another question. Do any of you have a lot of gas? Ever since my Gall bladder was removed in 2004 I have had gas issues. Like I can't drink carbonated beverages too much and there are other things that bother me. I've been having another gas "flare up" the last couple of weeks. I seem to have tons of it and after I eat its worse. I haven't been eating that well the past couple of weeks either.

  • I read that this is a symptom of cirrhosis, but I would imagine that if your bile doesn't flow properly in PBC, digestion is slowed. However, I don't seem to have any major digestion issues other than gas and acid reflux

  • I can't and don't drink fizzy stuff and I don't drink alcohol by choice, they all exacerbate my terrible reflux. I am on omeprazole for it, this works on the whole but some days (like yesterday and today, actually) the reflux is there even with omeprazole. On these days I guzzle gaviscon and crunch antacid tablets like sweets, LOL. The pain can be unbearable :(

  • I've been trying to come off omeprazole. I heard (Before all this issue) that it is really bad for you over time. I'm down to 10 mg a day. I've been doing a step down. I hope to be off it completly. I also take gaviscon too if I have a flare. I think that causes most of my gas

  • Hi , just want to say thanks for support . My appointment is rescheduled for next week but I'm ok .It is easier when you know that you are not alone in all this and other people have normal life . happy to find this wonderful forum .

  • Hello

    I live in the US also and dx.with APS & PBC. You difinitly have my support. I was told I have PBC 5 yrs ago. This was supported by a liver biopsy. The symptoms I experience are; itching, fatigue and bloating however can be bothersome. I take 300mg. Of Urdosol

    3x a day. My APS is a clotting disorder which are both autoimmune. This causes brain fog which to me is the worst. It happens they say with PBC also. I know it has with me since I had been dx. With PBC first and had the fog gneiss than.

    I hope by me telling you how I feel may help you relate in some way.

    Hang in there.

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