Yorkshire

[AmandaSlater]

Morning all

I live in West Yorkshire, close to Wakefield and would love to know if there are anymore folks with PBC local to me. I was diagnosed in 2014 and so far not suffering with itching etc but it would be nice to chat with someone local

[Bookworm7]

Hi Amanda

I live in Drighlington, was diagnosed in 2006, I suffer terribly with the itch and was listed for transplant last month, you always feel alone with this horrible desease and very rarely come face to face with fellow sufferers but its reassuring that we have this forum for shared bad and good times.

Debbie.

[AmandaSlater in reply to Bookworm7]

Sorry to hear you are st that stage but it's nice to know I am not alone in Yorkshire! Remain strong and positive x

[Paulajohno in reply to Bookworm7]

Hi Debbie, I am just down the road in Bramley if you ever need a chat. I would be happy to meet up. 🙂

[Bookworm7 in reply to Paulajohno]

That would be nice Paula, will have to get something sorted. Xx

[Paulajohno in reply to Bookworm7]

Not sure what the protocol is on here. My email address is [e-mail] 🙂👍🏻

[sophie666]

hi i live near pontefract and have stage 4 pbc shrogens disese and osteoporosis also arthritis of the spine im here anytime you need to talk xxx

[AmandaSlater in reply to sophie666]

Hi, I live in Pontefract ! It's nice to know there is someone else near here. You are a lot further down the line than me with other complications. Went to st James yesterday for my yearly visit and I have to have a bone scan ? No idea why, take care x

[Paulajohno in reply to AmandaSlater]

I had a bone scan in the summer. I was advised PBC can prevent your body obsorbing calcium. All was well. I was hoping so as I run around 15 to 20 mikes per week and wouldn't want this to be affected. X

[AmandaSlater in reply to Paulajohno]

Thanks for the info on why I having a bone scan. Everything just seems a bit confusing but I refuse to let it take over my life until it has to !

[AmandaSlater in reply to AmandaSlater]

I assume you go to Leeds hospital for your appointments ?

[Paulajohno in reply to AmandaSlater]

Yes, I go St James hospital. I am on 6 months appointments at the moment and monthly blood tests at my G.P surgery. So far my levels are dropping but not entirely sure what they check.

[Paulajohno in reply to AmandaSlater]

Sorry for my typos earlier 😀. I'm awaiting my 3rd check since diagnosis and I still have days when I 'wobble'. I tend to go with a list of questions as long as my arm. I have a similar attitude. I currently run regularly and live life to the full.

[AmandaSlater in reply to Paulajohno]

That's me to a tee, have a wobble and then get on with life, only just discovered this site and I have so many questions ( at last , someone to discuss it all with) but I think I will restrict it to a question a week cos my fine hasn't stopped pinging ! Take care and enjoy your running

[AmandaSlater in reply to AmandaSlater]

Fone not fine

[Paulajohno in reply to AmandaSlater]

Likewise. 👍🏻😀

[sophie666 in reply to AmandaSlater]

Will be to see if u have arthritis and osteoporosis I have both and now I have another autoimmune disease lichen planus it is a skin diseas

[Paulajohno]

Hi there. I'm Oaula and live in Leeds. I was duagnosed in June 16 and to be honest, I am finding it all a bit scary. I get intermittent pain in my right side and dry eyes and mouth but so far so good.

[janine541]

Hi im near Halifax and ive got Pbc/Aih. I work full time but suffer with tiredness and severe itching etc

[Paulajohno in reply to janine541]

What is AiH. How long ago were you diagnosed. Nice to hear from you.

[janine541 in reply to Paulajohno]

Auto imune hepatitis which is an overlap. And sometimes comes with pbc

[Paulajohno in reply to janine541]

Thank you.

[CathieG]

Hi. I used to live in Cleckheaton but moved recently to Sussex. Youre lucky not to have itching! Ling may it stay away.

[annieco]

Hi, I currently live in Lincolnshire, but aiming to move to Wakefield this year, as my daughter and sis live there. I have PBC and AIH, diagnosed about six months ago. Just been referred to Leeds - is it a main centre for us with liver problems? I struggle every day with overwhelming tiredness and head sweats? Can't take URSO (much to my gastroenterologist annoyance?). Who knew there were so many of us in Yorkshire! Xx

[AmandaSlater in reply to annieco]

Morning, yes Leeds st James does seem to be the preferred hospital up here. There was talk of us getting a PBC clinic which would be nice but I went for my annual visit this week and it was still in the usual everything to do with liver clinic. Lots of people are mentioning sweats, didn't know it was a symptom, just thought my menopause had been going on for 12 years ! 😀

[teddybear7]

I'm in North Yorkshire seen in Harrogate, so not too far away, quite symptomatic got 5 other autoimmune conditions which they tell me are all part & parcel just getting on with it day to day. Until another one kicks in lol. X good days & bad days I'm finding the fatigue & sweats bad at moment, but next month it might be the itch again, it's a bit swings & roundabouts for me. X

[weavergirl]

I'm in Saltaire, recently diagnosed, also at Jimmys. Seems I am lucky, no itching, just incredibly tired - also sweating like a pig!

[Paulajohno]

I've not had sweats but at 50 and no periods for 13 months I would have assumed any sweats were the menapause. It looks like we are keeping St James's liver unit busy. A PBC clinic would be nice rather than the general liver unit. Good luck to you all. 🙂

[AmandaSlater in reply to Paulajohno]

Hi , st James told me we were going to get our own PBS unit 2 years ago . Went last week and it was still the usual clinic . I agree with you, mid 50's here and putting the sweats down to menopause but I imagine that can't be the cause in the younger ones. Good luck ! 👍

[AmandaSlater in reply to AmandaSlater]

*PBC

[Paulajohno in reply to AmandaSlater]

I'm due back in April but not got my appointment yet. I'll ask them about the clinic when I go. 🙂

[annieco]

Hi, who does everybody see at Jimmys? I see Dr nandasoma, who is now questioning my diagnosis of PBC /Aih/overlap? I'm confused, I have wide bile ducts and all the symptoms? Been referred for an endoscopic ultrasound. Any advice gladly appreciated xx

[AmandaSlater]

Hi, I see a different doctor every time I go to Jimmys ! No continuity for me !

[LucyH16]

Hi Amanda

I live in York and I’m

54 and was diagnosed less than 2 months ago. Diagnosed with PBC and had a liver biopsy last week to see if I have AIH. Coming to terms with it all, lost so much weight, over a stone since diagnosis. Missing my gins!!

Lucy

[AmandaSlater]

Hi , I live in Pontefract, I am 58 , diagnosed 3 years ago, my mum has it too and is 79 and still going strong so take heart ! ❤️ I haven’t had a liver biopsy and go to Jimmys at Leeds once a year, I don’t seem to be given many stats but urso has reduced what numbers I do have greatly, I was told alcohol allowed but keep within the unit guidelines so I still have a guilt free glass of wine so go ahead , have a gin ! Only symptom is extreme tiredness so took redundancy from full time work when it was offered, now I have the grandkids and it’s twice as hard 😀, keep in touch, you are the only other Yorkshire based person I know- we are not alone !! Keep positive and stay smiling xx