PBC and working

I have recently been diagnosed with PBC, ANA positive and a weak positive autoimmune hepatitis. I have been out of work for almost a month now. I have a very high paced job (about 50 hr's a week, plus 10 more in commute), getting up at 4am and often not returning home until well after 5. I drive about 9 hr's a day and was falling asleep while driving, more than I care to admit. I have been having symptoms for at least 6 months, finally getting a diagnosis last week. I'm awaiting my prescription from the damn mail pharmacy my insurance requires we use. I'm wondering 2 things, first, is it possible to return to work or is it just a pipe dream? Second, my Dr felt it wasn't necessary to do a liver biopsy at this time, how do I know what stage I'm at otherwise? She seemed quite comfortable not doing it, but I'm concerned that since I'm symptomatic and have been for a while, I may be more advanced. I'm trying not to get too stressed and would appreciate any feedback you can give.

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  • Hi,

    I've been diagnosed with pbc 5 years ago, i'm a non responder at urso with progressive liverfunctiondisorders. I'm a surgeon, working 50-60 ours in a week. I've had bad times with the fatigue and itching but at the moment is better (with a bunch of medication...). So, it can become better than it is now! My hepatologist told me that a combination of sports and mindfullnes is proven to be succesfull for fatigue. In my experience running makes me less tired and less itchy and I believe working is my mindfullnes, love my job and it keeps me going on.

    They don't need a biopsy to know the stage of your disease. They can performe a fibroscan to measure if there is any fibrosis.

    Hope this is of any use to you (and forgive me for my writing, i'm dutch...)

  • Thank you so much for your reply, I'm hoping the ur so helps me. I've never heard of a fibroscan, I'm in the US, near Rochester, NY, is it widely available? I will try getting more exercise, hopefully that will help. Your writing is actually quite good ☺

  • Thank you, reading it for the second time I see all the mistakes I made... ;-)

    I think the fibroscan is an international thing but only known and used bij liverspecialist. My liverspecialist in a large community hospital din't use it (althouhg it is available in that hospital) but when I was referred to the academic center PBC liverspecialist it was one of the first things he did to check how what stage the fibrosis was. He checks it ones a year now.

  • Thank you. I will ask my Gastrointestinal Dr about it, she wants bloodwork repeated in 3 months, but hasn't referred me to a liver specialist as of yet.

  • Same works for me . My crafts and work (NICU nurse - level 3 - with 13 hour) help me to cope better. Also, due to other complex health issues I reduced my hours, which definitely helps with the fatigue. Fatigue, nausea and itching vary. For me it also works better to keep moving.

    My liver consultant told me that staging isn't that important as they treat clinically. I had fibro scan and CT which showed advanced liver disease with cirrhosis.

    I also had a couple of episodes of hepatic encephalopathy, but always manage to recover somehow 😀.

  • A fibroscan can say how damaged the liver is thankfully caught early at the present moment mine liver is ok 😊 I have responded well to the urso too. I believe a biopsy is not always accurate for pbc . Correct me if I'm wrong

  • Hi - I would say you need to take some time to accept the diagnosis and see how well you respond to URSO. Sometimes, URSO can help with the fatigue. What I would also say, is that your job sounds really taxing - I don't know how old you are, but for me (I'm 48) I couldn't cope with such long days - even before PBC. If you were getting so tired you were falling asleep whilst driving then you might want to think how you could alter your work pattern. Is there any scope within your job to do reduced hours, or less days perhaps? The key thing with PBC is looking after yourself and putting yourself first! Very long working days are not great for the soul! Maybe take a bit of time off work and take that time to reflect?

    It certainly is possible to do a full-time job with PBC - certainly in the early stages. Just sometimes you need to manage the tiredness. Itching can cause disturbed sleep, which in turn can make you more tired.

    Staging - as others have said having a fibroscan is better than a biopsy and less invasive. It's like an ultrasound scan that sends waves to the liver which bounce back and the reading tells the operator how 'bouncy' ie healthy the liver is. An ordinary ultrasound can show whether any of the bile ducts are blocked and causing a problem. I was diagnosed back in December as I was feeling more tired than normal. I thought my symptoms were due to the menopause but on investigation it turned out to be PBC. It took me a couple of months to come to terms with having the condition - but now I'm ok about it. I take solace in the fact that progression to cirrhosis is usually very slow - especially if caught early and you look after yourself by not putting too much extra strain on the liver.

    I'm working full-time now and quite happy to carry on doing so for the foreseable future.

    Good luck

    Hilary

  • Thank you Hilary. I unfortunately have been symptomatic for a few yrs now, also believing it was menopause (I'm 53) and never considered it could be anything else. I believe I'm stage 2ish, fortunately this is a slow moving disease. I believe it's genetic in my family, my mom had early onset dementia, she was 63 when she died. She started drinking often when the confusion started, she would forget she drank, prior she would drink a beer or 2 at night, but not in excess. When she died, cirrhosis was listed as the 3rd cause of death. It seemed odd to me, but less now, I often wonder if she may have had PBC all along. She used to itch constantly, I always picked on her asking if she had fleas, lol. Now I wonder...

  • Ah that's so sad about your mum. I suppose as knowledge improves so does early diagnosis. Hopefully yours will progress slowly.

    Take care

    Hilary x

  • the liver biopsy will stage your PBC for you. I am nearing stage 2 (at the time of my biopsy in early april). I am still working full time, but go through bouts where I'm so tired i want to take a personal leave. It's different for everyone I'm assuming (based on different stages). I was working two jobs at the time of diagnosis (one full time in a children's centre and one part time from home). I'm so tired most days that I am having a hard time keeping up with the home based job. I've had to talk to my boss and we've lessened my hours (for the home based job) but still it's too much. I'll be leaving that job shortly.

    I do hope you can return to work - but you may find that a less demanding job may be more suitable for you when that time comes... You'll know more when you get your biopsy back along with your symptoms your'e having now...i wish you luck with returning to a job at some point :)

  • Thank you Becca ☺

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