PBC auto immune disease

[Kwylie-12]

Hi has anyone been diagnosed with PBC on here?

My GP thought I had NAFLD but after further tests I tested positive for PBC,I have the antibody.

I’m waiting for a referral to a specialist but so far in limbo, all I know is that I have no obvious lesions or scarring etc and liver tests look good so I guess I need to wait.

I think I’m relieved it’s not NFLD but then again PBC is still liver disease and a rare one!

Any advice would be appreciated.

Thanks xx

[AyrshireK]

You will find good information about Primary Biliary Cholangitis (PBC) on the BLT page at:- britishlivertrust.org.uk/in...

There are quite a number of other PBC patients on the forum plus many recommend the PBC foundation forum also on Healthunlocked at:- healthunlocked.com/pbc-foun...

Best wishes, Katie

[Kakey]

I have PBC. Sorry to say it's not the better option compared to NAFLD, but if you join the PBC Foundation, you'll find accurate and understandable information. All the best xx

[Kwylie-12 in reply to Kakey]

Hi Kakey. Thank you. How is your health doing now?

I got my results on Friday, my liver function test and ultrasound are clear with no scarring, I tested positive for the antibody.

Still waiting on referral to the specialist to find out more but I’m hoping it will all be ok as I have 2 young kids.

Did you make any major diet changes? Xx

[Sydgal in reply to Kwylie-12]

You said you don’t have any liver scaring? That is a good sign, As Katie mentioned The PBC Foundation is a great tool of information.I have two children too, youngest is only 5 Yrs old, she is also autistic!! Such as life right! But I wish you all the best x

[Kwylie-12 in reply to Sydgal]

Thank youIt’s unfair the things life throws at us but there’s always someone worse off. Xx

[Kakey in reply to Kwylie-12]

No major changes, general healthy eating and exercise, diet doesn't directly affect PBC. The PBC Foundation "Living with PBC" is helpful. But if you have antibodies only and no other signs, you may just be monitored in case you develop PBC in the future.

[vulnerable]

Hi Kellie, I can imagine your in a state of shock. I was when I was told I had autoimmune PBC. I was asymptomatic fir many years before my health suffered. I had a liver transplant 3 years ago. My health has improved dramatically. Try not to worry too much- yes it’s daunting but you will be in great hands I’m sure with your hepatology team. I will be thinking of you and have you in my prayersMaggie ❤️🙏🥰😇

[Kwylie-12 in reply to vulnerable]

Thanks Maggie for your kind words.I’m glad you are doing well with your transplant xx

[hells456]

I was diagnosed with PBC 18 months ago. It is a shock to find that you have a rare disease. Luckily yours looks like it was caught early, so you'll probably not notice a lot of difference to your life. You'll need to take urso pills daily to stop or slow any progression and blood tests every so often to monitor it. Eating healthily is good for all of us, but you won't need a special diet. And we're all here when you want support.

[Kwylie-12 in reply to hells456]

Thank you for offering support. I will take you up on your offer. I hope you are keeping well xx

[Hidden]

Hi! I have PBC too, diagnosed May 2018 when I was 5 months pregnant with my 2nd child. It was a shock at first, particularly because I’d never heard of it!

I’m doing ok now, on 2 medicines to try to slow the progression down.

People are really supportive on here, and I’d advise joining the PBC foundation, they are excellent.

[Kwylie-12 in reply to Hidden]

That must have been a frightening time for you. I have 2 kids and worry about them. Thanks you! I’ve joined the PBC foundation

Hopefully we can all support each other xx

[Hidden in reply to Kwylie-12]

There is a lot of support on this site so don’t be scared or ever feel lonely, I found the loneliness aspect the worst part at the beginning, you may find that the PBC foundation has a volunteer in your county and they run online meetings where you can speak to other local people who have PBC which is such a helpful thing.

[Candy12]

I was diagnosed nearly 12 years ago, and know of others that have been diagnosed 30 years, so try not to panic. It is said if you start and respond to treatment your life expectancy is the same as the general population. Follow what your doctors say and live a healthy life style is the best advice. Contact the: pbcfoundation.org.uk/

They have all the information you need and are very supportive. During covid they have click meetings once a week where you can ask a question direct to their medical team, it is also on the Facebook page to watch afterwards , it’s been a brilliant service while Gp’s have had their doors closed.

[Kwylie-12 in reply to Candy12]

Hi. Thank you for the great info, I got the info pack yesterday from them but will joint the FB group.

We all need positive messages like this

Thanks xx

[Hidden]

Hi and welcome,

Its great to read how supportive the members have been on this thread.

If you are in the UK and do wish to have a chat, our nurse led helpline is open Mon to Fri 10am to 3pm on 0800 6527330

Best wishes.

[JennerLayne]

Hi Kwylie,

I do have PBC and AIH. Was initially Dxd with both in 2013 following the positive AMA test and a liver biopsy. My Gastroenterologist did not start me on treatment, as I was having no symptoms and showed zero fibrosis. Be persistent to start treatment NOW, so your PBC stays in check and does not progress! Following a host of symptoms in Jan 2021 (weight loss, a stomach bleed, anemia, itching, unrelenting fatigue, etc.), I switched doctors and just had a second biopsy. I finally started treatment earlier this month, though my disease has progressed significantly given I had no prior treatment.

As others suggested, do follow the PBC forums as well, so you can gain specific info on PBC. It is a rare disease, and you'll find helpful advice from those who are living the experience of this diagnosis. Good luck and stay well!

[Kwylie-12 in reply to JennerLayne]

Thank you so much for the heads up, this will be helpful when I see the consultant. Sorry to hear yours has progressed I hope the treatment quickly makes an improvement for you xx

[PeppyPo]

Hi

Can I ask what were your liver enzyme results? did they tell you have PBC just from a blood test? Sorry just am going through somthing similar and the not knowing and waiting is so hard I have an ultersound book for Tuesday. My liver function results came in at 193 doctoer told me not supposed to be over 50.. i also have an autoimmune disease Graves disease underactive throyid.

[Kwylie-12 in reply to PeppyPo]

Hi. I had an ultrasound in March and it looked good at the time but then it came back that there was fat so my doctor said I had NAFLD. I had bloods taken and they found I had the antibody anti mitochondriade which indicates PBC so now I’m just waiting to see the consultant which us firstly a telephone consultation.

As far as I’m aware they will do more tests and I guess it will go from there.

My liver function were normal and apparently my liver has no scarring or inflammation so hopefully it’s a case of getting the medication to slow down the damage.

I joined the PBC foundation and got lots of information, it seems that if you have PBC you are 50% likely to have another auto immune disease.

Hope you get answers soon xx