PBC Foundation
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Friends from Ireland

Hi I'm Living in cork Ireland and was diagnosed with pbc in 2004 when I was 29. I'm now at stage 4 . Feeling relative healthy the usual symptoms of feeling tired and right pain under rib cage And enlarged spleen . Suprisenly enough my itching has just left. I won't complain it's a blessing. Anyway I would love to try and meet up / make contact with people with pbc there must be a few on here from the emerald isle. Would love to hear back from you. Thanks in advance

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Hi Lynda,

I'm afraid I'm not in Ireland, so can't help much.

However, if you don't get any replies from fellow-PBC folk nearer to home, I suggest you re-post your message on a weekday, as I have noticed that general traffic and responses on here is much less at weekends.

I do hope you get some responses, whether it's now or after a later try. And good luck with the PBC, you sound like you are adopting the right stress-free approach.

[NB I do love Ireland: we were in Donegal, just last October, for my partner's 60th - he always had holidays there as a child. Meanwhile, my late husband was an Irish folk musician - among other trips we spent our honeymoon at a folk festival just outside Sligo in '78].

Take care.

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Hi Lynda. I am from Dublin. Living in Kilcock, Co Kildare now. Diagnosed 2012. Doing fine, time consuming with all the doc visits etc, monitoring etc. working full time :)

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Hi Lynda

I live in Galway Dx with PBC in 2008. Funily enough I didn't know anybody else before now in this country with PBC. It would be great to compare notes!

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Hi, I am in Dublin . I was diagnosed with PBC in 2008. Since diagnosis, I now have arthritis in hands, arms, neck. Osteoporosis was diagnosed last year too. Still have fatigue, pain and constant itching. 😞😞😞😞😞

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Hi there I am from Fermanagh was diagnosed with PBC in 2002 but started with the main symptoms of it itch,joint pain and fatigue in 2001 for me the worst of these being the itch which sadly has always been a problem for me 24/7 to greater and lesser degrees, Have led a -pretty full life and worked part time ur until about 6wks ago when had to give up as was getting too much for me. Am currently waiting on a liver transplant and hoping the call will come soon. Keep yoursellf wellnourished exercised and above all keep a positive mental attitude and u will do just fine.x

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Hi Lynda I'm from Co Armagh. I was diagnosed with PBC about 4 yrs ago when I was 27. I'm currently taking ursodeoxycholic acid. Luckily I have no itch but do suffer from severe fatigue and joint pain.

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Hi Lynda I am from N.Ireland am turning 45 next month was diagnosed with PBC in 2002 when I was 31 so just bit older than you at diagnosis. I have just had a liver transplant at end of June and so far so good am doin fab and have my month review this Fri. Hope some day soon to do a blog on my experience right up the present day so "watch this space!" Will try to keep in touch. Bfn. 😉

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Hi Lynda, I’ve just recently been diagnosed with PBC. I’m living in Kildare. Would love to get in touch with all of you here to find out more about treatment in Ireland. I was lucky for mine to be diagnosed so quickly on account of my brother having it. It took his doctor five years to confirm it. Is there a PBC foundation in Ireland. I believe there is a clinic in St Vincent’s in Dublin, but I’m not being referred there yet as in early stages. Look forward to hearing from you

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Hi Elaine. I haven’t been on here in a long time. Thanks for your message. I’m actually 16 months post transplant now that I had in st Vincent’s. Things went down hill pretty quick for me the last few years but thankfully I’m so much better these days. I was in dublin last Saturday at a Pbc meeting it’s on there once a month. I would gladly like to chat ! My grandmother also had Pbc. Sorry to see you brother has it also. Are you on face book ? Xx

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Hi Lynda,

Thanks so much for getting back to me. It’s fantastic news that you are well after your transplant and gives us all hope. I would love to go to the next PBC meeting if it is possible. Even though my brother was diagnosed ten years ago, he lives in Canada. He has been invaluable in letting me know about treatment and what to be aware of, but has no knowledge of the Irish health care system.

What has astounded me was how vague the symptoms were and was only discovered when I asked my doctor to do my bloods to check for another family disease and Sjogrens ( I had chronic dry eyes and mouth), among other symptoms.

It all makes sense now!!

Are you the lady who featured on the newspaper? If it was you, your article gave me the best start on finding out more about PBC. So thank you very much. Why did you deteriorate so quickly? Was Urso not around then or did you not take well to it?

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Yes Elaine that was me ! Glad it helped you. I was on urso since 2004. I don’t know what happened I went down so fast without any real warning. I turned 40 in 2015 and cycled the ring of Kerry for it for charity and a week later I was fighting for my life. I was told it wasn’t typical of Pbc ? So what was it I just don’t know ..... it’s strange ! I will probably never get answers! I can send you my number if you’d like it can be easier to talk if that’s of any help ? I also suffered with Sjögren’s syndrome but since transplant it’s gone. A lot of PBC patients seem to have an over lap of both ! How long again have you been diagnosed? Xx

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I had my bloods done mid December 2017. They called me in to repeat them 2 days later and was sent to A&E 2 days after that for an ultrasound scan. They repeated more bloods and an X-ray there.

I was referred to the gastroenterologist and rheumatology. I had my biopsy in February, which confirmed my diagnosis.

Thankfully I’m at an early stage. I do have fibrosis of my liver, but they don’t seem too concerned and I only have to go back every six months.

My bloods also showed I have hypothyroidism which seems to go hand in hand with this.

It’s the eyes and mouth issues that cause me the most bother as it’s hard to work with them. The tiredness I’m used to as I work nights.

At least you are past all this, although I bet it was scary that you saw your life shortened so quickly. I remember you have kids, my biggest worry is not being there for mine.

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Yes please send me your number. That would be great if you don’t mind

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