PBC / AIH overlap?

Hi all. I have been taking Urso for 18 months since diagnosis of PBC and generally feeling ok. Some stomach problems but manageable. A few months back I started to feel very tired all the time and my regular LFTs started going in the wrong direction. My consultant suspects AIH overlap and I'm awaiting results from additional tests. Unfortunately he's been away for three weeks so Things have been moving quite slowly. For the last four weeks I've been off work exhausted and sleeping a lot. I have nausea and after eating have stomach pain and usually diarrhoea ... I've tried low fat, gluten free, no spice etc but nothing seems to make a difference. After all this time away resting I still feel terrible and probably worse than when I first went off work.

I just don't know what to do. Is this what I should expect from AIH? if resting isn't making me any better then do I try to drag myself back into work? I struggle to explain how all consuming tiredness is to my work or GP..... Any tips greatfully received!

Sorry, a bit if a rant but if anyone's had similar I would love to hear how you handled this

Thanks, CheshireEm

5 Replies

  • Hello CheshireEm.

    Sorry to read that you are encountering fatigue at the moment.

    Unfortunately for you I just have PBC but fatigue can be a sympton of PBC remember.

    Back in 2010 when I was only 45 at the time I started to itch and never thought anyting about fatigue. I would finish work after a long day, get home and then flop on the sofa not having tea and fall into a deep sleep. Apparently I was encountering fatigue back then. My LFTs were abnormal. I was diagnosed with PBC end of that year by that time I was 46. Fatigue for me left at some point during 2011 and so far I just get tired due to lot of broken nights sleeping due to itching at night.

    It seems that diet has no bearing on the PBC though eating a healthy one can have some benefit from us perhaps attaining something else and maybe keep us ticking that bit better. Fatigue is said to be hit and miss when one is on urso too like the itching is.

    The itching and fatigue are real as I know. It is hard to explain to others fatigue I found early days of PBC diagnosis.

    I expect if you do have AIH then you might get some 'double whammy' with having that and PBC or you might just encounter certain symptons, I don't actually know there. I do know there are some others on this site who mention PBC/AIH so I will say now, over to them.....

  • Hello ChesirEm,

    You could try a anti-sea sickness bracelet for the nausea, it works for some people.

  • Unlike Peridot I think diet does have big influence on my PBC. I only eat essential fats & don't drink & my fatigue although still apparent has become manageable. If I have lots of fatty things it knocks me out & I don't feel well again till the liver has got rid same with the booze. I'd rather get up and do things than be absolutely drained & useless.

  • Hi, I have the overlap and like teddybear7 above, diet does seem to have a bearing on how I feel. I try to eat low fat and low sugar and although it's really hard whilst taking steroids, I have managed to lose a stone recently and feel better for it. I'm not saying I feel wonderful because at the moment I don't feel great, but I know I would feel worse if I just gave up - so keep trying to eat healthy and keep active is what I would recommend

  • I am so sorry to hear about your worsening symptoms. I hope it is not an overlap syndrome with AIH. Are your AST and ALT levels much higher than the upper limit? Have you done the ANA or the anti smooth muscle antibody (ASMA)? I have been very recently diagnosed with PBC and the doctors suspect I might be having the overlap syndrome with AIH which does not make things look brighter. They suggested I should do a liver biopsy but I still worry about it as it is an invasive procedure. If there is an overlap syndrome, the doctors might try a combined therapy with Urso and corticosteroids and this combination might get your liver tests back to normal. Try not to worry and get plenty of rest meanwhile!


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