So much going on

Hello everyone, I don't even know where to start or what questions I have. I have been diagnosed with PBC about two yrs ago. My "liver" Dr was very lax in my diagnosis. He seemed to act like it wasn't a big deal. That he even said that it wouldn't be something to worry about until I'm like 75 and then laughed, I'm 47. How do they come to diagnose PBC ? The only tests he ever did were liver function tests which were always high. He did put me on URSO which I took for a couple months but became extremely bloated. I did just recently start taking URSO again to see how it goes. Since being diagnosed I have heart issues last year they put in a pacemaker/defibrillator. I have PVC's &PAC's with tachycardia. Partial paralysed diaphragm. I'm going to see a rheumatologist the end of this month. My whole body gets stiff and sore mobing hurts and my biggest issue is EXTREME fatigue. Does anyone else have that? I'm not sure which issues are PBC or something else. I also see my "liver" Dr the end of this month.

11 Replies

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  • I am so sorry you are dealing with multiple problems. I hope things get more settled for you soon. As far as PBC diagnoses. I'm in the US, WA state. I'll tell you what they did here. First, the blood work for LFT (Alk Phos, AST/ALT, Bilirubin, GGT, and a few others) plus autoimmune system marker, called AMA. PBC makes LFT high and AMA "abnormal". Then they did an ultrasound to make sure there was no any sort of obstruction (abdomen), which would be another reason for high LFTs, not PBC. In my case it was all clear. After that I had liver biopsy to determine what stage of PBC. All of these tests together pointed directly to PBC. I've been on urso for 6 months. It looks like it's working so far, as some of the LFTs have gone down to normal range.

    I wish your all the best!

  • Hi there,

    I'm sorry to hear what you are going through.

    I don't have the answers sadly but I do understand what you are going through to some extent. My consultant was v much the same and very laid back as he told me it's "only PBC" and I "probably won't even know I've got it as most people don't."

    My main prob is the extreme exhaustion and I mean extreme. I'm struggling to function!

    I don't work as I stopped my career to raise my kids, one has Autism. But if I manage to go to the gym or dog walk then often I'm exhausted the next day.

    My husband kindly pointed out to me this morning "blimey, most people with PBC work, how do they do it?" I'm 47 yrs old.

    So my question to you all is how?

    I am looking to work now my son is older and I'm wanting some part time work. But today I've struggled to get out of bed! I'm up and about but only just! 🙁

    Here's wishing you well. Sorry I don't have the answers, but I do share your concerns.

    Best Wishes,

    Caroline-12

  • I wouldn't stress over the working thing. I've basically given up on working. I've lost two jobs in the past five years because of PBC. Between the extreme fatigue, multiple Dr appointments, the travel for Dr appointments, & the written restrictions make it difficult to keep work. I also suffer from HE, confusion & "brain fog". I know there are a lot of us who have disability. I've applied for it. It was probably one of the most difficult things I had to do since I've always been independent. Im only 43 years old & still having a very difficult time with all of this. But, this site is a great find.

  • Thank you for taking the time to reply, u appreciate it. I'm sorry to hear of your struggles. The exhaustion and brain fog is just awful isn't it. I have a day where I feel good so I dog walk, or go to the gym...then the next day I feel awful...and so frustrated! There's still so much I want to do!!

    I always said when my kids are old enough I would go back to work. Well now they're old enough...but I feel it's an achievement to get up and showered and do the housework...let alone go out to work!!

    Oh dear, it's horrible isn't it...and I'm constantly told I look so well! Was asked what my secret was the other day! Ha! That's a laugh! 😂

    Got to keep that sense of humour though, somehow!

    Take care.

    Caroline-12

  • Yes, I joke to myself some days. When people tell me I look great for 43,( Im 5 foot 6 in & weigh about 125lbs. ) I usually reply with something like, "I'll take some weight over my health any day!" We don't look like we feel that's for sure. My fiance asked why did I seem great for so long & now it's as if I've aged & slowed down to the extreme? Wish I had the answers to that question myself. I went from feeling great or being able to hide that I feel like poo, to no longer having the energy anymore to hide it. I told him that I just am too tired to keep my mask on these days. It's very frustrating, but I try to get through the day as best as I can.

  • Exactly!! I am taking a medical leave from work this month because I feel so crappy and when I told my boss it was because I was sick his reply was "You don't look sick"it's so frustrating!!

  • Hi Caroline - 12 , I was diagnosed with PBC over 5 yrs ago , but have prob had it for yrs due to suffering with fatigue. I no longer work full time couldn't cope anymore I do 2 full days a wk now and only just cope ! But can't afford to pack in totally , on my days off I usually have a nap in the afternoon cos can't keep my eyes open , apparently exercise is supposed to help esp if u push yr self as it makes the liver produce more energy , not sure I agree but my consultant says it does help but bless him he never undermines what I say and listens to my complaints and always tries to find a solution , at the moment we are working on my severe itching which is ruling my life at the mo, nothing working up to press🙁

  • Thank you for your reply.

    On a good day I do manage an hour and half dog walk and the housework...but it's then the next day I feel floored. I'm keen to get back to work but would an employer take me on after years out of work raising my kids, then with PBC, would I cope?! I suppose I can but try?

    Hope you keep well, and I'm reassured by you saying you manage part time work.

    Thank you!

    Caroline-12

  • Hi , hope yr keeping well . If you don't have to go to work don't go , I wouldn't if I didn't have to , and don't feel guilty this is a God forsaken condition and nobody understands what it's like to have fatigue and how it affects us !!!

  • Hi mk4wlk, sorry to hear about your troubles.

    A diagnosis of PBC is usually based on the finding of antibody AMA (M2) in combination with raised ALP (often also other raised LFTs) and GGT, which is a combination that is highly specific for PBC. Symptoms such as itching and fatigue are indicators too. In USA they may do biopsies to aid diagnosis or for staging purposes - here in UK they're more often used to clarify a mixed picture that could include AIH, for instance. There are also people with PBC who are AMA negative but ANA positive, which is a less common profile.

    Yes, many of us have the extreme fatigue you describe, and you'll find much support on this generous and supportive forum. Also, if you join the PBC Foundation (free), they have clear and comprehensive info to help you understand things better.

    Best to continue with Urso if you possibly can (read other posts about re-introducing it gradually). The outlook for many of us with PBC these days is very good, with earlier diagnosis and more treatments available, although no cure. It's usually a slow-progressing disease and it's commonly said 'we'll die with it rather than of it'.

    It's good that you're seeing a rheumatologist soon, often autoimmune diseases occur together, and there might be a treatment to help you if its that type of problem.

    Stay calm and positive, eat well, and avoid alcohol. Feel free to ask questions here and someone will try to help. Best wishes

  • Where are you?

    Wherever, contact the lovely trained advisors at the 'PBC Foundation' (they host this site on 'Health Unlocked' and there is a link to their website at the top of the page). There you will find email and phone contact details, as well as loads of info. They are lovely. Tell them as much as you know, preferably with all papers, results, letters etc to hand. If you don't have these, get copies from your GP surgery - there may be a charge, although really you should have received them from consultants an surgery when they happened.

    As someone else has said, for a formal diagnosis of PBC you need 2 out of 3 diagnostic criteria: these are:

    1 - the presence of AMAs (sub-typeM2) - 5% of PBC sufferers don't have these, which could be the cause for confusion in your case. And/ or:

    2 - abnormal liver function tests (lfts) which are typical of PBC - eg high ALP and GGT. And/or:

    3 - a liver biopsy that shows micro damage typical of PBC.

    Symptoms (eg: fatigue, itching, muscle and joint pain, digestive issues) help with a diagnosis , particularly if you only have 1 or 2, but most people have 1 and 2, as well as symptoms and this is enough for a diagnosis. In the absence of 1 or 2 a liver biopsy may be done (some people just have AMAs, and many of these never develop PBC, but they have to keep having their lfts checked; but in such a case, the presence of symptoms would probably lead to a biopsy being done).

    Ultrasounds cannot diagnose PBC, although they should be done, as they can rule out many other issues, as well as showing if there is advanced scarring of the liver, or other relevant issues ... which should lead to further tests and probably a biopsy.

    As Urso is the main treatment for PBC and if it works well on a sufferer, then PBC is slowed down hugely, as well as many of the other issues and symptoms. But, you either need to take it, for ever, or ask for investigation of the bloating. Lots of people on here have found different brands of Urso work, as some react to the 'fillers' in the tablets. There are also new treatments to take as well as or instead of Urso. If you are not happy with it, this need to be investigated. A lot of the muscle joint pain may stem from the PBC, so as well as seeing the rheumy I would stress all this to the liver consultant as well. If you hepatologist is not familiar with PBC, ask to see someone who is. You should not have to put up with any of this, and there should be a more consultation and working together -treatment.

    Please do talk to the 'PBC Foundation'

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