PBC query

[Pebs1982]

Can I ask, if you are allowed to on here, those that suffer with PBC, what symptoms you had, how it was discovered etc. Many thanks.

[Hidden]

Hi pebs1982,

My symptoms were.

Nausea

Pain right side coming across to middle.

Extreme itch

Fatique

Painful joints and muscles

Light headed ,woozy head

There are some people are non symptomatic and some people who have less symptoms or not as extreme.

Angela x

[Pebs1982 in reply to Hidden]

Thank you for your reply. That's really helpful.

[jane1964]

Hello my symptoms were itchy hands and feet and overwhelming fatigue I wasn't able to get anything done at home house was such a mess I didn't have any stamina I would start things but not finish them and often had to sleep in the day. For me getting a diagnosis helped as knowing what was wrong helped me learn to manage my energy.

[Pebs1982 in reply to jane1964]

Thank you fir replying that's a great help.

[Huggy7614]

Morning Pebs,

My pbc was identified following a blood test during a medical for insurance purposes.......I never got the insurance!!!

At the time of diagnosis I was asymptomatic, although I had an itchy patch on my leg and had done for a few years before. Was also tired, but put that down to working lots of hours.

The itching continued on the patch, and other symptoms followed. Within the year I had varices and portal hypertension identified. About a year and half after diagnosis I developed ascites and oedema, muddled mind and nausea, followed, the last few months were pretty rough to be honest. My pbc did progress quite quickly, many can go on for years with it.

Andy.

[Pebs1982 in reply to Huggy7614]

Thank you for that.

[Candy12]

I have PBC, diagnosed 10 years ago. Started with no symptoms ALP was raised during a routine blood test after going to the doctor with an abscess. The GP followed this up for 3 months when it didn’t return to normal I was sent for further tests. Then the consultant diagnosed pbc.

It was 5 years later I started to feel the fatigue and intermittent upper right quadrant pain, for which the consultant still maintains is nothing to do with my PBC, their words were, “I would at this stage only have some mild itching” ( which started last year , albeit intermittently for now ,for which I’am thank-full) still staged as f0-f1 as far as testing can be relied on.

I did have a marked rise last year in my bloods where it was deemed I no longer responded fully to the urso, so was put on another medication. My bloods are all in the normal range for the first time in ten years so long may that continue. My consultant said at the end of last year she is still confident I will die with Pbc not from it, so I’ll take that and get on with my life, despite all the aches,pains and sleepless nights from bone pain.

[Pebs1982 in reply to Candy12]

Thanks for replying. That's a great help.

[hells456]

It was cholesterol lumps over my eyes that sent me to the doctor and got me diagnosed, but now I know I had a lot of symptoms I wasn't aware were symptoms, fatigue, itching, no appetite, anaemia, slightly discoloured face, a large gallstone, hair falling out, weight loss and muscle loss.

I realise I must look completely dim, but who isn't tired with busy kids? And when I'm tired and can't be bothered to eat it wasn't a surprise that I was losing weight and developed a gallstone. In the summer it seemed reasonable that being hot made me itchy and in the winter heating makes skin dry and itchy. I was a blood donor so the anaemia was explained. I just didn't connect it together to see the big picture. Luckily my GP did and had me diagnosed within a week.

[kashik]

for 2 year on and off memory and confusion problems such as: inability to focus, feeling like someone stuck foot into your brain, foggy, inability remember things, basically not able to move forward with your thoughts. I felt like there was never clarity in my brain. ? fatigue -

It felt like i was getting old in the brain....

fatty liver US recent ..

No itching, just dry patch on my forehead looking like dry skin.

Liver enzymes elevated to little by little since 2010 now they are up to ALT 60 for years

Just got diagnosed- not on medication yet my liver enzymes went normal by itself and feeling good , will have my 2nd visit with doctor to repeat blood work, MRI .... let me know how you feel?

[Pebs1982 in reply to kashik]

Thank you for your reply. Can I ask what your fibroscan score was if you had one? I too had raised enzymes up to 70. I'm certain all my symptoms add up to PBC, I'm yet to have a diagnosis though. However I note 9/10 people who have it are female. So then I think I can't possibly have it.

[Huggy7614 in reply to Pebs1982]

I’m one of the 1 in 10!!!