General health outlook

Hello, I have recently been diagnosed with PBC, which was quite a shock. I'd never heard of the condition and it's taken a while to get my head around it, but I've found the PBC foundation really kind and helpful and I've started to make contact with other sufferers so it's beginning to feel less isolating.

At present I am in good health, have no horrible side effects and my liver levels are only just above normal, so it's been caught at an early stage. I'm also now on Urso but yet to see if I am responding to it.

My question really to other people out there with PBC, has anyone with a similar profile to mine had PBC for many years and kept it under control and not started to develop other symptoms? is this likely, or is it more normal that as time goes on I may start to develop itching, tiredness etc.?

I would really value hearing the experiences of other people.

Best wishes, :)

6 Replies

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  • Hi Happy-days71,

    Welcome to to the Forum. I am in a similar position to you, I was diagnosed in November last year with Pbc, I had mever heard of it either. I had 'routine blood tests for month after month in 2015 and had a US scan where it is discovered I i had gallstones so they they were removed. I no follow up to this operation and so thought that was that until I returned to the docs for an unrelated matter and the tests started again. I was then referred to consultant with 'an auto immune liver disease as the doctor put it. The consultant examined me and told me I had PBC. I was scared, isolated and didn't know which way to turn. I found this site after googling the condition and have learned loads. After 2 further consultations and another us scan and a dexa scan I've been on Urso for 3 months and a vitamin D supplement. I didn't realise how tired I actually was, but now I feel a lot better than I did , I put my tiredness and lethargy down to just getting older but clearly it wasn't. i think I've had PBC for around 3 yrs as I had itching of feet and hands which was treated as a separate issue but clearly wasn't.

    I haven't, fortunately had severe symptoms as some other people on here so I think I am to in the early stages. I think I've learned that this condition is unique to you, and we all develop this condition differently. With most I think it is managed with medication and others it develops quicker. I have read that the majority are more likely to die with PBC rather than of it.

    My bloods have returned to normal and I'm now being monitored at the hospital every 3 months.

    This site is really useful and someone usually has an answer to to any questions and I've posted a few on here.

  • I was diagnosed 6 years ago, I too am symptom free except for a sharp pain in the liver area as I eat . I have had small episodes of itching in the last year ( nothing like my friends I might add ) and it usually is because I've eaten too much chocolate , so I tend to avoid it now, I found taking a Piriton tablet stopped it quickly.I don't take Urso as it gave me terrible tummy problems . There are many people who don't have symptoms but it is different for each individual , here's hoping you remain symptom free.

  • Thank you to the people who have responded to my post, it's been good to hear how others are affected by PBC. I think you're right that it is different for everyone and I suppose the key thing is to listen to your body and look after yourself. I know new research is happening all the time so perhaps in a few years there will be a cure for this condition - I'm hopeful anyway. :)

  • Hello Happy Days! What a lovely user name! I've had PBC going on 5 years now. I respond well to Urso, thank heavens. I hope you do too. It's quite a shock when first diagnosed isn't it? I think it's important to allow yourself to feel and cry if you need to and talk about it to a spouse or friend or family member. Certainly this site is extremely helpful.

    I haven't seen your profile yet but I would say to keep positive as you may never experience itching or fatigue. So far, I haven't had the "itch" that other people have here but I have mild psoriasis so I certainly get itching and dry skin from that. I do get tired from time to time and if I can, I'll take a short nap. Exercise may help you. I go to the gym twice a week and walk for half an hour daily.

    And yes, it seems all the doctors are in agreement that this is something we will die with but not from! I liken it to people with diabetes who have to take insulin, we just have to keep taking our meds. Hopefully a cure soon!

    You'll be fine. Once the shock of diagnosis is over you'll get on with your life. And check on here from time to time as everyone is so helpful.

    Sending you a big hug.

  • Hi there

    I've been diagnosed for about a year and half and fingers crossed I don't have any bad itching problems apart from my psoriasis so I've always itch a bit anyway. I take my Urso every day I don't get any pains in my liver. I do feel a bit tired now and again but not to the extent that I can't work.

    I just live a normal life and don't think about my PBC. I don't drink alcohol gave it up when I was diagnosed. Was getting bored with booze anyway so is no big deal.

    I guess everyone is different and I was diagnosed early so only have very mild scarring

    All the best

    Mike 😊

  • HI, I was diagnosed 14 years ago and I am still as fit as a fiddle!!! I have never had any symptoms - itching etc, - but I don't think that has any bearing on the illness, I think you either have the symptoms or you don't. I take 3 Urso tablets at day and try to eat a fat free diet. Other than that nothing has changed in my life. Its something you can totally live with.

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