New pbc member

New pbc member

I'm male 38 yr old recently dx pbc.. I live in Kentucky ,USA right now . I was very stressed and depressed when I heard that I have a pbc from my dr. even tho he said not worry .. I'm in 500mg urso twice a day. In the beginning of medicine it did make me very itchy and fatigue but slowly they are winding down .. I have no diet restriction except alcohol .. I do smoke socially rt now like 10 cigarets a week but I'm Going cold turkey soon .. I love drinking bourbon but I haven't drink scince I was dx 4 months ago.. To kill my alcohol craving I drink 2 or 3 light beer in a weekend only .. I have reflux , Lacoste intolerance , and may be irritable bowl too.. Anyway , I have decided to have another opinion about my dx so I'm going to the one of the best liver specialist from uni of Louisville on May 18th..

I do have a reaccuring uti it may be due to pbc that I have to talk with my dr..

This site is awesome I'm already feeling nice by reading ally the positive things about pbc ..


9 Replies

  • Hiya again Sachin1234.

    I thought my reply had vanished at first until I noticed you had re-transmitted your original posting. If you look at the 'down arrow' next to '+ Follow post' under your posting on this one a box drops down and you can delete this.


  • I too was age 38 at diagnosis and turn 56 this year. Fatigue has been my worst symptom and I took early retirement 5 years ago. But my quality of life is still good even though I have extensive cirrhosis and I hope I will remain well for many years to come. Try staying positive, if someone would have told me you'll still be well 18 yrs later that would have really helped me thro those early uncertain years of anxiety.

    All the best to you 😀

  • Spoul, thank you for your post. Its the uncertainty that gets me. I wish I had a crystal ball so I could see the future, but I expect lots of people would like one, diagnosed with a condition or not! The fear of what could happen is affecting here and now and having a label of an illness and all the possibilities of what could happen takes a lot of bravery and confidence to put to one side, and so much easier to do when you feel strong and vital. I wonder if people get used to the diagnosis and are therefore better able to emotionally cope with whatever is round the corner? part of lifes rich tapestry eh?! all the best to you Spoul and Sachin1234 :)

  • Hi mighty mum, I guess life with or without pbc is about trying to

    Live in the moment. The future is a mystery to us all and we should trust in the now - we can do nothing about the past or the future so just think of today and the worry will diminish. I was a great worrier but have learned to drop the what ifs as most of them never happen anyway. All the best

  • Thank u Liver-bird, wise words. I think its a shock to get the diagnosis and it takes time to comprehend. I havnt accepted it yet and planning ahead is a real struggle for me, whether its short or long term planning, or even this afternoon! perhaps I will have the energy, maybe not. I find that a difficult way to live and bring up a young family. oh well, moan over ... it is what it is, best make the best of it! all the very best to you too Liver-bird x

  • Hi, do you know what caused your pbc?

  • No I don't what caused my pbc and non my family has it either .. I'm just been unlucky I guess and its a auto immune disease which has not been understood by scholars yet like how it triggers or flare ..

  • Well I found out a few weeks later that I have Sjögren's syndrome and that's what has caused the damage and also to my lung. I just try and eat a non inflammatory diet and be the best I can be. Hope you get on well.

  • Hey dude,

    35 North Carolina, male, pbc and Nash. This is a good site for information!


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