New Here!

[Figgy-Zen]

Hi, I am in the know about PBC because I have had it for 10 years. I would like to meet some of you and gain some friends who are going through the same issues.

Thank you

[mrspeffer]

Hello and welcome. I'm in year 21. Sure has been a strange journey. How are you doing so far? This is a wonderful place to be. I started on here about a month or so ago and feel much better about what I am going through...Not alone with this anymore

[gwillistexas]

Hello 👋. I am in first year of diagnosis & doing well. So far, no symptoms. Labs are showing positive results. Good to have you here🦋

[4pjx__]

Hey Figgy Zen! I was diagnosed about a year ago. Stage 3 severe fibrosis. Apparently Imhave had the illness for quite some time. I didn't see the doctor forhealth check ups so, I am pretty sure that's how it got so bad. In all I am doing pretty well, and I feel better since I started taking Urso. I live in Colorado USA.

Pam

[Ktltel]

Hi Figgy-Zen,

I start my 2nd year being diagnosed in Oct. Doctors think I've had it for at least 5 years. They say I'm early stage 1. Never had a Fibroscan, only biopsy. Nice to meet you. How are you? What symptoms are you experiencing today? Any secondary AI's?

Stella ❤

[gwillistexas in reply to Ktltel]

Ktltel...any idea how they determine how long we’ve had this? I’ve often wondered. Good question to ask my dr. I’ve only read we can have many years before diagnosis.

[Ktltel in reply to gwillistexas]

Hi, my GI doctor guessed by looking back at my medical records. I'd had my appendix out in 2010 and a hysterectomy in 2011. My labs back then showed an elevated Alk-phos. Something they apparently missed back then and never checked out further.

[gwillistexas in reply to Ktltel]

Interesting. I looked back at my CMP. ALP in 2014-normal, 2015-5 points above normal, 2016 -normal & 2017- not so good. AST & ALT were normal in all except 2017-barely above normal & then they came down. All a mystery.

[KevinHall10_]

Welcome..

[susanburgess]

Let people know the area you live maybe someone might live in your area

[butterflyEi]

Hi Figgy-Zen

That is such a beautiful flower, thank you for sharing. Hello and welcome to the group. I presented to my GP around 1996 with symptoms that were dismissed no blood tests were done. In 2006 I was diagnosed with PBC and was symptom free until a very stressful event in 2014 set off the itch. It took a couple of years trying different medication to end up with the cocktail of drugs I now have which for the most part control the itch of my PBC.

I have found this forum invaluable with lots of knowledgable and kind people.

best wishes

[DoreenD]

I was diagnosed 1988 so nearly 30 years and still doing ok on Urso. I think I had this long before being diagnosed whwn I read about the symptoms. I live in Australia but originally UK. Best wishes Doreen

[GrittyReads]

Hi Figgy-Zen,

And welcome.

I only have AMAs (first noticed in 1992, but perfect lfts, and health consistently perfect, with no PBC symptoms, since then). So,I'm at risk of PBC, but I don't have it yet, at all. However, I come on here regularly as I've learned a lot about PBC through being wrongly diagnosed with it by a new-to-me GP/plus then a consultant in about 2008. This was overturned, a few years ago, by one of the UK's leading PBC consultants

The 'PBC foundation' who host this site on 'Health Unlocked' are UK-based, and there is a link to their website at the top of the page. They have 'PBC Support Groups' in most areas of the UK, so they are the best people to talk to if you are in the UK. Plus there are large PBC Organisations in many countries, and the PBC F may be able to advice you on those, or others may come on here in answer to your query. If not post again, saying where you are.

Hope this helps, take care.

Best wishes

[My-life]

Hello. Diagnoised 5 yrs ago but I know now I have had it longer. When this tomgirl had no strength. Blessing.

[Ruthyloo]

Hi have had autoimmune pbc since 1979 I go to the docs every 12 months get told either up or down on the results come back in 12 months all I no have picked up on the internet. My life is very streeful I am 61 look after my mother full time who is 92 look after my family. I have just started with a pain in my right side and back don’t no if I have pulled a muscle or it is my pbc I am scared to go the docs don’t have time to be ill. I put up with the itchy skin and tiredness some days are worse than others I just seem to keep going. My doc just not seem interested at all.

Ruth.