PBC newly diagnosed

[Willow1050]

Hi I have just been diagnosed with PBC by my GP through routine blood test as I was feeling tired all the time and awaiting my appointment with the Specialist in 4th December, please can anybody give me advice on what may happen at my first consultation and what questions i need to ask, my head is all over the place, don’t know what to expect. My AMA is 800 if that makes any sense.

[Wass71]

Hi Willow,

Do you have raised ALP? There is a recognised criteria for diagnosis of PBC. If you Google EASL guidance PBC, you'll find the doc. Sorry I can't do links on my phone. The best thing to do is join the PBC foundation. They have the most up-to-date information you can get. It's free to join, it gives you access to a compendium of info, and a layman's version of the EASL guidance. This includes things you should ask Dr's and what to expect from health are.

It's worth doing that bit of research, but I advise against general Google searches as there is a lot of spurious /outdated info out there.

Wishing you well,

Wass x

[Willow1050 in reply to Wass71]

Hi yes I do have a raised ALP at 452. I have joined the PBC foundation but was struggling to find anything, I will look at the EASL guidance thanks,

[Candy12]

Ive put the link to the PBC foundation website, all the info is there. Click on register and register with them, to get access to further member information, you can also be emailed or sent their quarterly magazine which has useful articles from there medical teams. They have a help line as well if your wanting some help putting together questions for your appointment, they will set you on a good path of understanding.

Urso - Ursodeoxycholic acid is the first line treatment for PBC, it may be worth asking your consultant about it if your GP hasn’t already prescribed it.

I didn’t get a diagnosis from the GP, so my first consult was purely to arrange the relevant tests for diagnosis, but once diagnosed I was prescribed URSO. If you can go informed about PBC you are in a good starting place. Hope it all goes well.

pbcfoundation.org.uk/

[ENuk]

Welcome, I was diagnosed a year ago and prescribed Urso which has so far worked very well.

Your GP did well to diagnose it as most do not have knowledge. Where will you be referred to? At appointments in the Royal Free I have blood tests and a fibroscan.

I initially felt a bounce back in energy levels but that seems to have leveled out.

Fatigue is one of the most challenging parts of this condition for me and doesn't seem to go away. I do however manage to work full time in a hectic job and have children.

Urso seems to work well for most people and it is a slow progressing disease so the mantra is "you will die with PBC not from it".

Good luck

[Hidden]

Good morning Willow1050,

As you will already see you will get lots of support from our lovely forum members and they have already recommended the PBC Foundation.

pbcfoundation.org.uk/

I have also included a link to the British Liver Trust Primary Biliary Cholangitis (PBC) and liver disease tests explained which may help to guide your questions for your consultation on the 4th December.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

You can also call the helpline on 0800 652 7330 Mon-Fri 10 am - 14.45pm and speak with one of the liver nurses .

Best wishes,

Trust9

[Willow1050]

Thank you everybody for all your support, it’s good to know there are forums like this where I can get further knowledge on this condition as I had never heard of it before.

[ThreeSmiles in reply to Willow1050]

Hi Willow - a lot of us - like me - didn’t find out about this forum until well after we have been diagnosed. For me I didn’t find find out until after my TP, and that was from my son. It was then that I found out he had liver problems too (what a roundabout way to find out ☹️).

I hope all goes well with your consultation.

Good luck 👍

Miles

[Willow1050 in reply to ThreeSmiles]

Thank you, that must have been hard finding out your son had liver problems too. Take care.

[Wass71]

When I was diagnosed in 2006 I can't imagine what I'd have done without the fabulous PBC foundation. They sent me loads of info (now all on their compendium online). I'm sure if you call them they can offer advice. However with a raised alp and positive ama I think your gp has correctly diagnosed you. They should organise a scan or mri to check the liver and bile ducts (mrcp), and start you on urso as the others have said. I would hope that this will happen without you having to ask. If not, don't be afraid to ask, you are your own best advocate. This is something the PBC foundation champion. People being in control of their own health care, being aware of their meds their blood test numbers, and to know when things need reviewing.

Best of luck for your appt. I hope you get a kind and knowledgeable Dr.

Take care

Wass x

[ThreeSmiles in reply to Wass71]

Too right Wass, you absolutely do have to look after your own health because in the current state of the otherwise wonderful NHS the poor doctors have absolutely nil chance of keeping track of each person’s ailments.

Milo

[Hidden]

Hi Willow, I totally agree with the above. Be respectfully in control through being aware of your meds, numbers, fluctuations. Mutual respect is key to getting the best out of managing this condition with your consultant and GP's help. That's great, your GP diagnosing you, and makes you rarer than ever in your rare disease! Best wishes for 4th December.

Phyllis