Hello everyone

[Totumpole]

I was recently diagnosed with pbc and didn't realise that I had symptoms for at least 5 years (convinced it was the menopause), had blood tests done over past 3 years nothing showed up except possible high cholesterol. Dr decided he needed more tests and a scan. I'm on urso now but I'm confused about quite a lot. I don't know what stage I'm at or what to eat or not, how much exercise. All I can remember really from the conversation was I could have 3, 5 or 10 years and 20% chance of transplant, give up smoking and eat a balanced diet. I was given the pbc pack and when I looked up and read about it I realised I had quite a few symptoms itching, fatigue, pain in my joints, restless legs, liver palms and I get breathless if I walk longer than 10 mins, which is a far cry from how mobile and physically able up until the past year or so. What do I need to know from my consultant at next appointment later this month? I'm getting scared and feel uninformed and alone.

[Buddy2017]

Blimey , think your doc needs to learn about PBC ...I was told , like many , "You will die WITH PBC rather than From it " . I suggest you join the PBC Foundation who will send you a pack of good information. I was diagnosed 8 years ago and still have no symptoms. I also haven't changed my diet ( many people have ) and I still enjoy a ciggie

[cocotte5 in reply to Buddy2017]

I have Pbc since 2002 on Urso since i retired 2 years ago,exept for dry eyes, mouth,once in a while at nite and a few joint pains now and then im fine but my AP are still 245 and staying the same so my specialist is starting me on OCA 5mg tuesday and friday with my Urso Im a little anxious about Oca because of the side effects, my biliburin and albumin are good, fibro scan showed a little fibrosis ,ive lived my life as usual not thinking about this rare disease nobody knows about it anyway try not to worry ,take your med,try to live healthy and stress free as much as possible good luck to you!

[ENuk]

Hi, welcome to the site. Where are you based?

PBC is a slowly progressing disease and Urso, in my case and many others has been highly effective. After 6 months my blood tests were much lower. I hope you have read or accessed the information on PBC as there is lots of advances which means there is no reason to feel too despondent. The phrase used is "you will die with PBC not because of it"

Like you I blamed a whole range of symptoms on menopause before finally getting a diagnosis.

Fatigue is my biggest symptom and one that doesn't seem to go away. I also have Sjorgrens as it is common to have multiple auto immune conditions.

I do however work full time and look after children as a lone parent so whilst it is a struggle I have managed to function.

When will you have a scan? I assume it's a fibroscan. This is another assessment tool and is used as a benchmark, 3 or 6 months after taking Urso you may have another one to check improvement.

It takes a while to let the emotions sink in but you will hopefully get lots of positive reassurance from your consultant.

Good luck

[cazer]

I was told 5 years roughly before transplant... But it ended up as 20!!!

They really do not know... So I would put that to the back of your mind.

Staging doesn't mean that much as I was classed as stage 4...at the point of diagnosis but it was still 20 yfs as I say before my transplant 2 years ago...

A lot of people never need one...

Eat healthily, little and often, carbs to keep up your energy.

I personally think fats are not good.. But we are all different...

Some day red meat is not good in quantity...

It's trial and error with exercise... Do what you feel able to do... But smaller sessions may be better...

I think the best advice I can give is to pace yourself... If you have a busy time coming up... Have some restful time before and after.

I found the more I did the worse the itch and aches but moving is good for all of us... Xx

[liver-bird]

Hi Totumpole, it is very worrying to receive this diagnosis and you will hear many things which are not accurate. I was told I will probably die with it rather than because of it.

Join the PBC Foundation and get your info from them as it will be up to date and reliable. I have heard PBC called a glacial disease because it normally moves so slowly. If you respond to Urso your liver tests will improve and if you don't, there are some good alternatives.

Eat healthily, go easy on fats, and keep your weight in normal range. I don't drink alcohol unless I am toasting an event. As fatigue is a common symptom and varies in intensity, I try to exercise as much as I can but don't overdo it. Pace yourself and get plenty of rest. Itching is another common symptom but there are medications to relieve it.

Try not to stress, the more you get to understand PBC, the easier it will be to manage.

Keep in touch with this group as there is lots of knowledge and understanding here. Big hug. Diane

[Totumpole]

Thank you all for your advice and kind support. I'm feeling a lot more positive already. I'm based in United Kingdom and receiving treatment from the NHS. I do have life insurance with a option to get a 2nd opinion but I think I'll leave that atm until I know a little more about my diagnosis. I will read more of the information in the pbc pack and website to get my head around it. Also I have had a scan and my liver was pretty angry (Dr's words), I could see how red it was, which is quite worrying,. I guess I'll just have to wait until the next appointment and have a few questions ready for my consultant. Thank you again for the kind advice and support you've showed. God bless you all.

[EileenUSA]

Hello,

I echo what the others have said above. Give yourself time to wrap your head around the diagnosis (we have all been there--- in time we adjust)

The PBC Foundation has this great document that lays out latest guidelines for diagnosis and treatment of PBC. It also has easy to use set of questions to ask the dr. Here's a link to the document.

pbcfoundation.org.uk/upload...

The Foundation is a fantastic resource and they advocate for PBC research etc. It's free to join.

Glad you found us here-- together we share the journey! Hugs from acrosss the pond.