New on here with PBC

Hi all. I was diagnosed in 2013, quite by chance. Although I have a NHS Consultant who I see annually, I have rather buried my head in the sand as the only symptom I have is the itching, but even this comes and goes. I recently had stomach pain and went to my GP who ran blood tests. I happened to see the Liver function test (normal range 0-50), mine was 88!!! The Doc said, try not to worry, you are seeing the Consultant next week so ask him if it's of concern!? For the last week I've been dwelling on things, have logged back onto the PBC Foundation site and registered on Health unlocked tonight, in the hope that I might be able to get reassurance from fellow PBCers!

I have never received any advice from my Consultant about diet, medications to avoid or cutting out alcohol. That will be tough, I love a glass of wine. However I have started to dwell on if/when I deteriorate, I'm only 48 with a family and I'm scared that symptoms may become unbearable.

How are you all feeling and how do you cope day to day - positive stories please ;-)

Best wishes Katherine

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  • Hello KatherineM_PBC.

    Reading your recent LFT (liver function test) I don't understand you reading. The LFT is usually made up a few components, ALP, ALT, bilirubin and albumin on mine and I know I tend to receive a reading on all of them with the normal ranges in brackets. In the LFTs just the albumin and the bilirubin have been normal range (the bilirubin has hit one point over last 18mths), always have been to present. My LFTs have never come down to normal in the 6yrs I've been diagnosed with PBC (I was 46 December 2010 at diagnosis).

    I started itching intensely early 2010 and this is what led to diagnosis. I had fatigue at the time but it vanished at some point during 2011. I just itch that I know of as we can't know what the bloods are going to be without a medical check.

    I asked to be discharged from my consultant late 2011 as I felt I was wasting time going. He agreed with a condition I might be referred back in future. I just see a GP at intervals (or make that when someone can be bothered - I seem to have to be the one running around to make the appts for the bloods and to see GP annually. A GP just seems to write the urso repeats and not bother asking me to go in!).

    Personally I have just cracked on with life after the initial shock of having PBC. I decided one day that if I didn't life would just pass me by and I'd not do anything. The itch always reminds me I have PBC but it tends to be confined to night (currently I am starting to feel prickly and by 11p.m. I do know I am itching. Causes broken nights of sleep but by 6a.m. I feel normal again until the morphing stage again early evening!).

  • Hi Peridot, thanks for the quick reply. It's great to know there are people on here with the same condition who understand. As regards the Liver Function Test, I was shown it was made up of Serum ALT level / alkaline / bilirubin and serum albumin. They were all within 'normal range' except the Serum ALT which at 88 (Normal 0-50) As my GP does not have the specialist knowledge to explain this I'm waiting until I see the Consultant tomorrow.

    Like you I just get a repeat prescription from my GP for the Urso and take 900mg a day - is this the average dose? I'm happy to stay on my Consultants list and see him annually.

    The frustrating things is I have read, that people with advanced liver disease sometimes don't get symptoms and others get them bad - I wonder what is best to help the body stay as healthy as possible, I guess it's a good diet and cutting out my favourite Sauvignon Blanc?!

    Stay positive :-)

  • Hi Katherine. Nice to read your post and I hope you find the forum supportive and a good source of personal experiences and stories. I was diagnosed with PBC in July, also by chance, although I do have other autoimmune conditions and had been very fatigued for the last few years. I'm 50 and have three boys in their teenage years, and I was also concerned about how fast the PBC would progress and how I would manage family, work and life in general. Through talking with my consultant and reading posts on this site I now have more hope that the disease is likely to progress slowly enough for me to see my boys well into adulthood, so I consciously try not to think about that any longer.

    In terms of coping, I don't have itching but am exhausted from the moment I get up until I crawl into bed at night. As this is unlikely to change for the better, I make a conscious effort to put thoughts about what might happen in the future to the side and to focus on the great bits of my life as it is now. I have more peace of mind this way now I'm not worrying so much about what might happen, especially as there seems to be little we can do to change it.

    Modern medicine has little to offer apart from Urso (which even my specialist doesn't believe does any good), but I did decide to take it 'just in case'. I've also seen a naturopath and am eating a more antinflammatory, much less processed, diet in an attempt to prevent more autoimmune conditions from developing. I keep meaning to exercise again but am struggling to find the energy - I do intend to now that summer is here. With regards to wine, my specialist said that small amounts of alcohol won't cause any harm so I have around one wine a week. PBC is here for life and I've decided that it's not going to stop me from doing all the things I enjoy and that includes a wine at times, especially as there's no conclusive evidence that it small quantities will exacerbate PBC.

    I hope the positive posts from fellow PBCers help you through this tough time. It's nice to know that some people do understand what you're going through, even if you've never met them.

  • Catherine

    I was diagnosed about a year ago and I thought my world had ended reading on the Internet told me I only had 10 to 15 years I then joined the foundation and I read that the oldest person with PBC was 101 and she died with her illness not from it. I see my consultant or specialist annually to he has not really told me about diets just to carry on and enjoy my life I do try to eat healthy and try to avoid alcohol But like you I do enjoy a glass of wine and sometimes a few vodkas I try to stick to only special occasions but in our family special occasions can be once a month. My consultant told me I could have 10 units a week . I pretty much have no symptoms to just the odd itching occasionally but that comes and goes and like you I was just having a routine blood test's and that's how come they found about mine if I think back i've had the itching for about 10 years so maybe I've had it longer then I think. I don't want to be put in a stage I don't want to know I've never asked for my blood results while I'm feeling well and good and can get on with my life that's what I'm going to do .sometimes it's hard and I do still worry . But life is for living and nobody knows how long we going to be here with or without a illness my husband has cystic fibrosis and they told him he would only Live until he's in his teens but here we are and he is now 56 years old I'm so proud of him he always tells me don't worry get on with life what will be will be so enjoy your family and take each day as it comes sorry this is a bit long winded but I know how you are feeling is has taken me a year to get this into my head take care Tanya

  • Hello.

    This forum is really helpful, as there are a lot of people in a similar position and who are willing to help each other out with advice.

    Sometimes it can be hard, especially if you're symptomatic, I have been for a number of years and now have other autoimmune conditions. It takes time to adjust the idea of having the condition too.

    I think it helps to look after yourself, rest when you need to, try and eat reasonably well. Diet-wise my consultant said for inflammation and auto-immune issues avoiding gluten is a good idea, but obviously that's personal choice. I don't drink now either, as don't want to exacerbate anything, but again go with how you feel and medical advice.

    I think having plans and things to look forward to helps. As does knowing this forum and the PBC Foundation are there to call upon when needed. x

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