Hi - New to Forum, PBCer for 3 years

[Boosh]

Hi,

I have just joined so thought I'd introduce myself, I'm 35 and was diagnosed with PBC in 2009 after tests showed Derranged LFT's and I was referred for a Liver biopsy. Funny thing is, I had only gone to the GP's as I had slight breathing problems and a little abdominal pain.

When the doc called me to confirm diagnoses the only word I heard was 'cirrhosis' and I completely freaked out. I then made the mistake of googling PBC which freaked me out even more as the first site I went on told me life expectancy was about 3-5 years..

Luckily my specialist sat me down and told me not to pay too much attention to anything that wasn't related to either the PBC or Liver Foundation sites, he prescribed me Ursofalk and advised me to modify my diet slightly and that I should be able to lead a relatively normal life.

Over the past 3 years I have also developed Sjogrens and Raynauds and I have found that the fatigue and swollen glands has increased along with the joint pain but these things have developed relatively slowly so I am just about able to deal with each one as they come and try and adapt.

I have read a few blogs on this site and they seem to offer great advice and be quite reassuring and friendly, so though I'd join and say Hi

[mumofthree]

Hi Boosh

Welcome....I was diagnosed with PBC in Jan 2011 and am now 52. I like you, googled PBC on the internet... we must have found the same sites because I was absolutely terrified too and went into a spiral of denial, depression and a feeling of being totally alone.

I was referred to a rheumatologist by my GP querying rheumatoid arthritis because I had been suffering for years with severe joint, bone and muscle pain. The rheumatologist referred me to a gastroenterologist without me even knowing following results of blood tests they had carried out. I went along to the gastro appointment believing there had been a big mistake and that I should never have been referred there because as far as I was concerned I didn't have anything wrong with my stomach...my ignorance. I was seen by a gastro registrar who was not very tactful and told me I had PBC. I had never heard of it before and pressed for more information. He told me the results of the blood tests showed I had PBC which was an autoimmune condition which affects the liver and that I could have 3 years to live. I was absolutely devastated. He told me I needed some scans, blood tests and and a liver biopsy to confirm the extent of the damage and gave me a GP's leaflet on PBC to read. Then of course I went home in a state of shock and disbelief and googled PBC on the internet which bore out what he had said about life expectancy which absolutely floored me... all I could think about was that I would not see my youngest (10 at the time) grow up.

The gastro Consultant gave me the results of my blood tests, scans and biopsy. He was brilliant and put my mind at ease. He told me that the condition may never turn into cirrhosis but if it did there was always the possibility of a transplant. He prescribed URSO to slow down progression and told me that by adapting slightly there was no reason why I shouldn't go on to have a long life. To say I was relieved is an understatement.

It hasn't been easy but I am getting there. I did not find this forum until May/June this year..I so wish I had found it sooner as it has been an absolute godsend. Everyone is so friendly and helpful...I don't feel so alone and feel more positive about the future.

Good luck and best wishes to you

[Val02]

Hi Boosh

Im 49 years old and was diagnosed in 2008. I started with painful joints, particularily the shoulder joint at the time. I was referred to rheumy who did the blood work and referred me on to gastro....and well the rest is history. I have responded well to URSO and my liver is now in pretty good shape, (quote, unquote my consultant). Unfortunately my joints have remained a major problem for me and cause a lot of pain.

You will get alot of support from people on here and hopefully you will pick up a few tips along the way.

Take Care

[mrspiggy]

Hi Boosh,

Welcome to the group. I am fairly new too and only joined after reading in our local paper about a lady who had been diagnosed with PBC and was running in a relay marathon to raise for the foundation. I am 40 with 3 small kids and was diagnosed in Mar this year however have known about the poss of PBC for just over a year. I think a huge percentage of newly diagnosed people go onto the internet and unfortunately the reading isn't pretty but once you read inbetween the lines "could" and "may" and get properly informed by joining the PBC Foundation then it really starts to look a whole lot better! I have finally accepted the diagnosis and am coming out the other side. I am excited about life again and just getting on with enjoying my family to the full. Even upto a few weeks ago PBC was on my mind ALL the time however in the last couple of weeks I find myself thinking that I haven't thought about it in ages

Best wishes - Mel xx

[BECCAFROMWISCONSIN]

Hi Boosh,

Welcome to the group.I am fairly new to this myself I'm 52 diagnosed 2 years ago, had no symptoms went for routine checkup and thats when it all started, was told after running test after test and having a liver biopsy that I have PBC,also ulcers,RH,high bloodpressure, well at the time my weight was 318lbs and I got a wakeup call and needed to change my lifestyle so I did.Oh then this past june I had some more test done and found out I have CELIAC DISEASE.

So I put myself to work and read everything I could about PBC and CD and so far I have have lost 109 lbs no longer on bloodpressure meds, and all my test are going back to normal out of the danger zone.I also became a vegan, and just eat clean and exercise everyday.PBC isn't going to ruin my life and I say this in a positive voice everyday.

Best to you in everyway.

Becca.

[scthompson]

I was diagnosed in 2000 also. I declined the URSO and although my blood tests are pretty bad, the liver tests indicate it’s not progressing. It’s such a scary disease; it seems like people turn a corner for the worst really suddenly and then urgently need a liver transplant!

[gwillistexas in reply to scthompson]

May I ask what liver tests you’re speaking of that indicate no progression?

[DonnaBoll Administrator]

Welcome! we have all been newly diagnosed at one time or another and have experienced so many emotions that go with that. I hope you have joined The PBC Foundation, as they have so much to offer! They also have a phone app that has so much that will prove to be helpful as well. Please don't google. This is often inaccurate and out of date. Using the Mayo and Cleveland Clinics websites are helpful as well. Unfortunately, many other auto immune disease can occur along with PBC. You are right about taking each one as they come. I would suggest belonging to their respective foundations/support groups as well. Just remember to take one day at a time. Live life and do what makes you happy. You will never be defined by PBC or any other disease.