new diagnosis of pbc

[Cumbria7]

I have just had a new diagnosis of pbc, I am taking urso, I have had one telephone call with a gastro consultant, things are all up in the air I have lots of questions which I don’t feel have been answered. I felt rushed on the phone. I have got the pbc app which has helped greatly

[Flid]

Have you tried ringing the British Liver trust 0800 652 7330. They have a helpline and you could ask any questions? I don’t know if you need to schedule a call with a liver nurse or can just ask - I’m not in UK - but someone here will know!

[Cumbria7 in reply to Flid]

Hi. Thanks for your

[Cumbria7 in reply to Flid]

hi

Thanks for your reply, I rang the British liver trust and spoke to one of the liver nurses they were really helpful. They suggested I should have a plan in place, also that I should have been referred to a hepatoligist rather than gastro, not sure if we have any near me though. But thanks anyway x

[Samanthaann]

This forum is very helpful. What surprised me was when I went to my other doctors and told them I have PBC they all look at me and say what is that? Just keep educating yourself.

[CeeCee101]

write out your questions, don’t let the doctor off until you have gone through all of them. With an odd disease patients need to become strong self-advocates. Also try to get Professor Jones’ book on the guide to PBC. It’s VERY helpful

[gillrich in reply to CeeCee101]

And the pbc foundations compendium

[Cumbria7]

hi thanks for that and where did you get the book x

[Flid in reply to Cumbria7]

You can order on Amazon, the second edition is the latest

[She-66]

have you got a face to face appointment coming up? write down any questions as you think of them ready x

[Candy12]

Give the PBC Foundation a call, they have a help line number. You won’t regret it they are so helpful. When I was diagnosed 14 years ago my consultant told me nothing, but he passed me a piece of paper with the foundations details on it and said “give them a call” best thing he ever did it’s where I learned all I know about PBC and this now enables me to advocate for myself and that’s a powerful thing.

My last phone call appointment with the consultant was hopeless and I told her I wanted a face to face appointment and she agreed. Maybe that’s worth a try especially being newly diagnosed you deserve to have your questions answered.

[Cumbria7 in reply to Candy12]

Hi fortunately I had already downloaded the pbc app and made sure I read the guidelines which were brilliant. But I just was just made to feel that this condition was insignificant and also felt he wanted me off the phone asap. I am also a practice nurse but none of the gp’s I work with new much about the condition either.

[Candy12]

Your getting the right info from the foundation do give them a call. They could put you in touch with one of there local volunteers as well and perhaps meet others with PBC.

[Rialto2]

I'm from Cumbria, 54 , diagnosed about 18 months ago and put on urso straight away. Ive had pretty much same experience. Ive had 2 telephone calls from gastro in this time and recently had a fibroscan and bloods ( waiting to hear results). The lady who did the scan actually advised me to keep pushing for results etc as as she put it ' we are in a system and it is a massive system'

[Cumbria7 in reply to Rialto2]

Hi where about in Cumbria are you I am also from Cumbria near barrow xx

[Rialto2 in reply to Cumbria7]

Whitehaven. Xx

[Cumbria7 in reply to Rialto2]

How are you coping with the treatment?? X

[Rialto2 in reply to Cumbria7]

Hi, I'm taking 4 urso capsules each night and having no problems so far. My recent blood test my ALP was 151 - had been 220 in 2021 so I think that looks promising? Havent had any results yet from the fibroscan I had a few weeks ago. I called the gastro secretary who said she would ask consultant to write out to me but not received anything yet. Also having a bone density scan on Sat. How are you coping? Xx

[Cumbria7 in reply to Rialto2]

Hi

I’am on 1500 of urso so take 2 tds, their not easy to take but I’am managing. I have not had a fibroscan yet or dexa scan. I did mention the itch that I have and fatigue for which I was told it was not probably related to the pbc. So no treatment offered. I don’t know about anyone else but I can itch until I bruise. Xxx

[Rialto2 in reply to Cumbria7]

Hi, Sorry to hear you're struggling. From everything I've read the itch and fatigue are known problems with PBC and will be related to it. I haven't suffered with the itching thankfully but I'm sure I've read that there is medication they can give you to help with this. Is it the gastro dept at Cumberland Infirmary that you have been dealing with or a different hospital?

[Cumbria7 in reply to Rialto2]

Hi

It’s FGH in Barrow and Lancaster RLI

But as I said before phone call was so rushed don’t even know consultants name , all I know is that it’s gastro. Xxx

[HB70]

I'm the same, the consultants are hopeless. I've had two phone conversations in three years. I have to do all the chasing. Thankfully I am symptom free and responding to urso. Helen

[Cumbria7]

hi

Like I say it’s very early days for me, so still shell shocked. I have type 2 diabetes, asthma, hypothyroid, osteoarthritis, sleep apnoea and now this. The consultant I spoke to was a gastro consultant, who just seemed to want me off the phone x

[enalynot]

I got diagnosed in 2013 and it was very scary at first not knowing anything apart from online my consultant at the time said don't worry you'll probably die of something else

[Lollypop89]

Omg I am feeling the exact same .. I have yet to even speak to specialist .. my GP seems to be doing all my tests and prescribed Urso after she spoke to my specialist.. I asked GP all my questions I had .. she didn’t have a clue on any off them 🤦🏼‍♀️ good luck & keep us posted how you get on please x

[Cumbria7 in reply to Lollypop89]

Hi

Thanks for that is just good to get support from somewhere and the people who actually have this condition. I have rung the British liver trust as someone kindly pointed me to this service, the nurse was very helpful. It’s just the complete lack of support from the people who are supposed to know about this condition

Thank you will keep you posted xx