PBC

[Notagain101]

Just been diagnosed with PBC. Anyone else here who has this? Really want to know what to expect.

Notagran101 I can’t believe someone on here has got Pbc I was diagnosed 10 days ago with it! What meds are you on, I’m on urso

I'm not on any. I have a scan in august on my liver then my next appointment is October. I got diagnosed two years ago by long covid clinic and been on waiting list until last month

The consultant confirmed it a month ago despite my bloods finding it two years ago. They thought it may have been a false positive so was tested again by consultant and results indicate I do have it.

I was asking as I have read about it and am a little worried it's been left so long and I'm still not on urso. Feel like they've messed up a bit.

Can I ask what how you were diagnosed and what you blood tests showed ?

Little bit similar to me Notagainlol I had been given blood test reports a few months ago and on there it said possible Pbc in 2017!!, now I know we are in 2023 so I’m very annoyed this wasn’t explained to me back then, as I was AMA positive, I had liver biopsy again few months ago and it’s been confirmed I have pbc , it does make me wonder if I really had it for 6 years, I have just started urso a couple weeks ago and having meds changed along the way and now blood tests every week for the next four weeks

It was sheer fate. I had a full blood screen done for long covid and it came up via these tests. It was something called AMA in the blood and something else but can't remember what that was.

Thanks both for replying.
I ask as I have had several blood tests several years ago showing positive antibodies which indicate PBC but have not been diagnosed or had any other further tests done, not even the yearly liver tests I was promised.
Notagain did you have a liver biopsy as well?

Are your liver function tests normal? I was being screened for lupus and an incidental finding was high levels of antibodies that are very specific to PBC. It was AMA M2, along with anti SP100 and anti BPO.

My GP sent a message to gastro and was told I didn't need to be seen unless liver function tests were out of range, so I'm currently having those yearly.

I was told I'm probably going to need one. I guess I will find out more in the October appointment.

My liver function tests are normal. Same happened here, it was pushed back to the GP.

I went to the GP and said I wasn't happy to be left in limbo. GP agreed and wrote the consultant and the liver clinic took me back on their books.

Do you have any symptoms from it?

I've been getting this weird ache where my liver is for ages and ages. It freaks me out.

I also get really bad hives which I have to control through a mass amount of anti histamine every day. Not sure if this is related.

No, I can’t say I do, I’ve been given lots of tabs to help it, this is the weird thing about it, I’m having blood tests every week to check what’s happening, I’m so shocked that I’ve got it , obviously they found it by liver biopsy so obviously got it and I’m on immunosuppressants and urso to help the pbc. I suppose I will know much more when I get results and see the hep in four weeks, I have loads of questions for him,

Happy to answer any questions Notagainlol if you want to private message

Interesting to hear your experiences.
My GP at the time was very inexperienced. She did refer me to Gastro (I think) and they said I just needed annual LFTs as mine were normal then.
I have only had these a couple of times (so far still normal) but its a bit anxiety making being left totally in limbo.
Not that I much like the sound of Urso....

You're talking about Primary Biliary Cholangitis, right? (Formerly known as Primary Biliary Cirrhosis)

Aren't you supposed to have annual cancer monitoring for liver and bile duct cancers? And five yearly screening for bowel cancer? And urso to slow disease progression regardless of LFTs?

The point of urso for PBC is that it can prevent disease progression. So you take it before the disease progresses, you don't wait for damage to occur. By the time your LFTs start going wonky, you've missed a valuable window to slow the disease and get a better outcome.

I thought LFT monitoring was to track disease progression and get onto transplant lists at an early stage. I didn't think it was supposed to preclude treatment with urso because that completely misses the point of preventative care.

The positive of PBC (compared to some of the other autoimmune liver diseases) is that urso actually has an evidence base and is approved to slow disease progression. Why has it not been started or trialled with you?

I'm really shocked that anyone with a serious diagnosis like PBC isn't under consultant care for the rest of their life and receiving preventative care. That doesn't sound right at all. Please push for the proper care you deserve.

Itchiness caused by PBC can sometimes be treated with colestyramine.

You have just said exactly the same thing as the conversation I had with my GP. Only you said it more articulately lol.

I was astounded they pushed me to the GP to effectively wait until the damage was done before being referred back to the consultant. Luckily the GP agreed which has resulted in my appointment in October now. I have an ultrasound booked also before the October appointment.

Not going to lie, I'm really freaked out by the whole thing. I have a young child and a single parent which is worrying me.

From my understanding you dont get a diagnosis of PBC purely on the presence of above range AMA,, which is what I have.
My ALP was in range when the antibodies were picked up (tests were done in error when I had thyroid issues) and was ok last time it was tested last year so I dont meet the diagnostic criteria.
I am very bad at being assertive when it comes to my health so feel a bit worried reading the replies here, though they are super helpful.
I am also a single parent and also have osteopenia (I gather PBC can lead to osteoporosis) so this is concerning.
Should I discuss next time I see my GP?

Yes, it is often a slow/lengthy route to diagnosis as it's uncommon. And not well understood by GPs - or anyone who's not a liver specialist really.

I would certainly raise it.

Have they definitively excluded any form of liver disease? (There are other less common possibilities than PBC.)

Were your initial results a blip that resolved? Or are you continuing to show abnormal unexplained results? If so, I would want an explanation of why that's not being investigated.

https://www.pbcfoundation.org.uk/

There is some really excellent information here, lots of clinical research being done on this also.

Is that a fibroscan you have booked? It's a special type of ultrasound that measures liver inflammation.

It's understandable that you would be worried to receive a diagnosis like this. It's uncommon and comes with a hefty dose of uncertainty. I'm sorry you're going through this.

What I would say to offer reassurance is:

• you've been diagnosed whilst asymptomatic during other tests, rather than because your liver had started causing you problems. That's positive and improves your odds for good outcomes.

• lots of the research you might be seeing online about prognosis is based on people diagnosed years or decades ago when treatment options were poorer/nonexistent and/or may not have been diagnosed until advanced stages. Those numbers keep improving in more current research.

• PBC now has two approved preventative treatment options with an evidence base that they slow disease progression. That's great. (A decade ago, that wasn't the case - in 10 years, there might be more)

• it's not a totally rare disease so research is ongoing, making headway (see point above!) and more options may come up in future.

• fibroscans are a newish development, they weren't available (at least not on NHS here) a decade ago, but they are a useful non-invasive tool for monitoring the disease accurately

• PBC has better prognosis, better treatment options, and fewer/less severe complication risks than some of the other autoimmune liver diseases. It's crap to have any disease, but if you're stuck with one it's the 'good' one to have.

It's good that your GP agreed to push back and that you have appointments lined up. Might be worth printing NICE/NHS treatment guidelines to take with you if you're worried they may try to fob you off.

I would also investigate support groups and specialist organisations. It can be surprisingly comforting, even just to read the "newly diagnosed" page. (Whereas general googling is usually terrifying and not recommended.)

https://www.pbcfoundation.org.uk/

https://britishlivertrust.org.uk/

@user194682946829475274 Excellent post.

Op, lots of reasons to be positive however for your reassurance you should be seen by a liver specialist. That could be the issue as some local hospitals don't have hepatalogists. Newcastle is a centre of excellence for PBC as well as Royal Free and there will be others. There is also a Cambridge research project for PBC.

Speak to PBC foundation and Liver Trust and then ask GP for a referral, you may need to travel to another hospital but it will be worth it for the specialist nature.

Having low ALP doesn't mean you can't have PBC. In 2017 we had a Dr say that it can't be PBC based on low ALP levels. Now in 2024, after seeing a different doctor and having a biopsy, we have been given the diagnosis of PBC even as the ALP remains low.

We only just got this diagnosis, and I would be interested to hear how people have found UDCA (urso) and how sick it made them feel and for how long.

Hi iamshore I’ve been on urso since diagnosis and must admit feel good on it now side effects whatsoever

I've been on urso for three months so far and I've had some bloating and constipation, no other side effects.