Just Diagnosed

[sooo]

I have been diagnosed with Pbc after months of tests and a biopsy! Help!! Im a bit scared.

[Tumbleweed41]

Welcome to the forum, sooo.

There is nothing to be scared about, really. Life just throws us a curve every once in a while and we have to figure out if we are going to go with it or fight it. Fighting it just makes us feel worse - which we definitely don't need - so I have found in my nearly 71 years that doing the best that we can with what we have is the best way to go. I was diagnosed with PBC in 2005 and refused to accept it until I was diagnosed in 2007 with AIH/PBC overlap syndrome with the PBC in stage 3.

Read all that you can on PBC. I recommend contacting the PBC Foundation. They are very knowlegable and helpful. Also the Mayo Clinic website for information, even if you are in Europe. They are another top hospital in the world for Gastroenterology/Hepatology.

Also read as many of the blogs, questions and comments on here as you possibly can.

How long ago were you diagnosed? Have you been put on any medication yet, such as Urso, Prednisolone or Prednisone? What else did your Dr. tell you other than you have PBC? Did he/she explain it at all? Some are better at it than others, sadly.

If you ever feel that you just need to rant, let off steam,or have a blow - we all understand and usually most of us do it at one time or another. Male or female, we all need to "let go" sometimes and there are no wimps, wusses or weaklings here. This disease doesn't care who or what you are or where you're from and neither do we - We are all in this together and here to help each other in our own way.

I don't know if this has helped you at all but I hope that you will stay with us and "join in" as often as you like.

One other thing (LOL) there is no such thing as a "dumb question", ok?

Take care and please stay in touch

Tumbleweed

[Val02]

Hi Sorry to hear about your diagnosis. I think we were all scared when first told we had PBC but you will come to accept it with a bit of time. Ask any questions you like here people are very good at sharing their experiences. You dont say how old you are or how developed your PBC is? I was 45 years old when diagnosed after being ill for several years before. My liver tests results were seriously bad, but within a year of being started on URSO my bloods all returned to normal. Most people find URSO really helps.

Take Care

[sillybilly]

Hi Sooo

I like you have just been told I have AIH / PBC overlap syndrome . I to am scared, I don't really no what it all means . Went to the Doctors for something else and had blood tests and more blood tests , then got told I have these other things wrong . Nothing really explained to much , This site has been my only source of info and it's been great. But still can't really come to terms with it all .not had a biopsy , but I have been put on meds.

Please try and stay positive , I no its hard and I have my down days, still can't really still come to grips with it myself. But we are not alone

Love Sillybilly

[mumofthree]

Hi Sooo

I agree with Tumbleweed41 about getting information about PBC but would stress that for the time being you try and keep to a reputable source like the PBC foundation for your info and not delve too much into the internet. I did not find this forum until May 2012 and it has been an absolute god send. If you are in the UK give the PBC foundation a ring they are happy to listen to, give advise or answer any questions you may have and will send you a very useful and informative compedium.

It is only natural that you are feeling a little scared....Its fear of the unknown. You will go through a rollercoaster of emotions over the coming months. I went through a spiral of denial, depression and feeling totally alone.....But it does get easier honestly just give yourself time!

I was diagnosed with PBC in Jan 2011...I had never heard of it before and it came as a great shock to discover that I had an incurable autoimmune condition that was having a detrimental effect on my liver. My diagnosis came about after being referred by my GP to a rheumatologist querying rheumatoid arthritis and then referred on to a gastroenterologist querying the result of blood tests carried out by the rheumatologist. My symtoms (having suffered for many years)were severe joint, bone and muscle pain. I had been seen by a rheumatologist previously in 2001 querying viral arthritis. I had waited from Feb 1999 to Oct 2001 for the referral to come through.... I was told I did not have arthritis...try and loose some weight...he could not give me any reason for the pain I was experiencing and basically said go away and put up with it. I was 11 stone and 5ft 7ins so hardly obese and 9 1/2 stone when problems first surfaced following the birth of my 3rd child. I lost all faith in the medical profession after that and self medicated for years until I visited my GP in Aug 2009 out of pure desperation I was at the end of my tether and couldn't cope any more.

My 2nd referral to rheumo came through really quickly in Oct 2009 and had xrays, an MRI scan and numerous blood tests and was due to go back for results in Jan 2010 but that appointment was cancelled. I chased my appointment up for many months after and kept on being fobbed off with..I have not been forgotten... I am not an urgent case.....they are a little behind due to rheumatologist having left etc etc. In the May/June of 2010 I received a letter from the Gastro department confirming receipt of my referral and that I would receive an appointment in due course.... I thought there had been a mistake as I did not have anything wrong with my stomach...I rang them to be told I had been referred to them by the rheumatology department and that I should contact them if I needed to know more. Rheumo told me I had been referred following a query with my blood results. The gastro appointment came at the end of Oct 2010. l went on my own to the appointment as I still thought there was some mistake. I was seen by a gastro registrar who broke the news!!....He said the blood test showed I had PBC but that I needed a liver biopsy to confirm extent of damage...Not having expected this I asked what it actually meant...I was told I had an autoimmune condition that affects my liver and that I could have 3 years to live.....I was totally devastated. All I could think of was that I would not see my youngest child grow up...he was 10 at the time. The only written info he could give me was a GP leaflet on PBC. When I got home I started looking PBC up on the internet...very limited info out there but what I found frightened me to death. I went through the next few months in a blur and absolutely terrified. I had the results of my biopsy etc in Jan 2011..this time I was accompanied by my sister to act as my ears and to speak for me as I could not think straight...This time I was seen by the consultant who was brilliant and put my mind at ease....He prescribed URSO to help slow down the progression of the condition....and explained that the condition may never develop into cirrhosis and if it did there was always the possibility of a transplant....but by adapting my life slightly there was no reason why I should not have a long life...I had a life to live after all!!

Joint, bone and muscle pain and fatigue are my main problems other sufferers also have problems with itching...touch wood I don't have that. When you have previously been so active mentally and physically its really difficult at first to accept that you can't do things exactly as you did before. I am still able to do all that I did before ....with a few adaptions along the way everything is possible.... I used to fight the condition especially the fatigue and ended up making myself really ill and collapsed at work. I was so exhausted I could hardly function. My GP told me I was fighting against my condition so much that my body was telling me enough was enough and shutting itself down....I needed to listen to my body.

At one time I could have cleaned my whole house in a morning but now I split it up over a few days. If I go somewhere where I know there is a lot of walking involved....I make sure I have plenty of stops...good excuse for a cup of coffee or just watching the world go by. Now if I feel tired I have a lie down (not when in work obviously...don't think the boss would be too happy!!)....sometimes a cat nap of 20-30 minutes is enough, other times I can sleep for hours but I wake up more refreshed and ready to take on the world. I have noticed my concentration span has got worse...I work part time in a large office (worked there since I was 18 I am 52 now) when at work I have to concentrate really hard... I find I now have to read things over and over again...it does take me longer to get things done but I get there in the end. Thank goodness it has not affected my output enough for my boss to notice...only a matter of time I am sure. I do feel really washed out when I get home from work though and have to have a cat nap. I would be fibbing if I said that it has been easy coming to terms and adapting because it hasn't ....but as I said before just give yourself time.

I have only told a handful of people that I have PBC...my husband, my sister, her partner my two eldest sons (25 and 23), 3 close work colleagues and my boss (only because I had to following an admission to hospital). I have chosen not to mention it to many people because it is suprising how ignorant some people can be. I told one of my colleagues and when I said PBC stood for Primary Biliary Cirrhosis...when she heard cirrhosis she immediately assumed I had a drink problem...which I didn't and don't have. After that I felt the need to have to justify myself every time I told someone. Now if I need to bring up my condition I just say I have PBC which is an autoimmune condition..and leave it at that.

I am sorry this has turned into an essay. I hope I have been able to help in some way.

Best wishes and hugs sent your way

[BethanD]

Hi Sooooo,

Don't be scared. Nothing seems to happen in a hurry! Everything is a gradual process. So we get many symptoms and all seem to be linked in some way to PBC! You will have many questions and more will occur to you as time goes on as they do to all of us. This is a brilliant place to get information that is so difficult to get hold of. We are a community and try and help each other with anything we can.

Please try and stay positive - it helps not just you but everyone around you.

Regards x

[sooo]

I am overwelmed by everyones kind comments, and thank you all so very much, they are very reassuring.

I am 50yrs old and have been having problems for sometime, mostly dry eyes, mouth ,itching and constantly feeling tired most of the day and joint aching.

My G P put it down to an underactive thyroid!

In feb this year my Dentist sent me to an Oral surgeon as he thought I may have Sjorgans syndrome who inturn sent to a Rheumatologist, who thought I had Fibromyalgia but did blood tests and when I was called in for the results he said I am sending you to a Liver Specialist? What I thought I hardly ever drink!! This must have gone through your minds too.

To cut a very long and drawn out process down I saw the Gastro guy who I had never seen me before" you have PBC you will need a liver transplant and in 10 yrs may not be with us!!!" I was struck dumb, he then said Im booking you in for a biopsy! Goodbye!

When I went back to my car I burst into tears, 1 at the shock and 2 how blunt he was.

This biopsy appointment was also a nightmare I was told it would be in a month 8 weeks later and numerous phone calls to the hospital and my GP, they admitted that hadnt sent it!!

Anyway I had the biopsy on 17th September and recieved the results last week.

I have been put on URSO 250mg twice a day and no more explanations, my friend came with me as she is paramedic to ask questions but the consultant said " you have PBC, live with it and you will need take these tablets to slow it down and then in a few years a transplant!! See me again in 12 weeks!

So I have started the URSO on Saturday and then found this great site, that is my story sorry its a bit long winded.

I am going to give the PBC foundation a call about diet etc and shall I take Multi vitamins etc

A very Big thank you for your lovely and very helpful comments.

[mrspiggy in reply to sooo]

Hi Sooo,

OMG I am not suprised you are feeling scared. I cannot beleive your medical professionals being so blunt and to be honest totally insensitive. It just goes to show how different they all are. My own DR and liver specialist have been nothing but positive and reasurring. My specialist said not to lose sleep over my diagnosis and that he had recently diagnosed a lady in her 90s on the ward and she never even knew she had it! Most people die with PBC and not from it. Yes, granted we are all different and whilst I can imagine ther are people who die in 10 years after diagnosis and have liver transplants, but how can they possible say that to you without doing the appropiate tests. And even then the rate of progress is totally different for each person. It wasn't until I actually saw the liver specialist that he even mentioned a liver transplant and even then he said this was the worst that could happen and that even that wasn't a bad thing considering how well transplant paitents do. For me becoming informed was the best thing I could have done and not by reading up on the internet but by contacting the PBC Foundation and they sent me a package with heaps of information on the disease and their Bear facts magazine. It took me at least a year to get my head around my diagnosis and at 40 with 3 small kids under 7 I was really scared my quality of life would be affected and I really worried about the future. I was diagnosed in Mar this year but found out it could be PBC last summer. I have made enquires to meet up with local ladies in my area who also have the condition and I have finally accepted the condition. I am excited about life once again and am looking forward to the future because it really isn't as scary as you first think and life does go on. I have reduced my drinking to special occasions only with the plain to give up completely and I follow the Liver Cleansing diet (Dr Sandra Cabot) and I take some of her supplements (livatone - which has been approved by my specialist, however he said I could get most of the ingredients from food sources but the tablets wouldn't do me any harm, Sandra Cabot recommends avoiding dairy and gluten if you have PBC regardless of having any intolence to Gluten however he didn't think this was necessary and said just to follow a healthy diet! ).

Good luck and keep us posted on how you get on.

Much love to you - Melly xx

[Mole]

Hi Sooo

Regarding transplants. My liver specialist told me that there was about a 5% chance that I would ever need a transplant. 20-30 years ago before Urso the situation was a lot bleaker but unfortunately there's a lot of info still circulating based on out of date information.

If you can find the "Bear Facts" magazine online on the pbc foundation website - I seem to remember there's a recent article - based on UK statistics on transplants which show's how the need for transplants for pbc is reducing.

By the way - if any of us do have a transplant - from what I've read - people with pbc do really well post transplant and can have many healthy years ahead.

I'm really sorry to hear your consultant is so negative. But it's just his opinion - despite the title and the white coat - he can't possibly know for sure what's ahead. None of us can. So it's good to try to take each day as it comes, enjoy today, do what we can to be healthy and try not to worry too much about the "what if's".

Take care x

[sharon7716]

Hi Sooo

One of the sayings i got from the PBC foundation (they are wonderful) was "you are more likley to die with PBC rather then because of PBC". I was diagnosed over 10 yrs ago and went through a spell of a few years were i could only work part time and have been back working full time now for over a year, feel better than i have in a long time. on urso, live with the constant aches and pains and when my body wants to sleep then i give in. Found with myself that fatty foods set off the itch and a glass of my fav tipple will send me to bed for 2 days so on more baileys for me or glasses of wine, but other people have no problem, its all just keeping a look out for anything that seems to make it worse. I have to plan in housework on my days off with breaks in between tasks, best thing i found was the delay button on washing machine, load and set on going to bed so all finished by time i get up ready to go on line or in dryer.

Give the pbc foundation a call.

all the best

[Magnolia]

Sooo, Tumbleweeds advise was so perfect, I can't say it any better. I have probably had this disease since 1987 but no Dr. could diagnosis until 2003. I have had fatigue off and on in my life and just this past year started with the itching, although right now it's not so bad. I do have a lot of joint pain, which as occurred about 5 yrs. now. My Dr. scared me also, beyond what he should have. I don't think he knew enough about the disease, for so many Drs don't. Welcome, I'm fairly new, but this is a great bunch of people who will answer everything they possibly can.

Magnolia

[sooo]

Addenbrooks

Hi everyone, Just an update, after reading all your great advice and reassurance I decided to book an appointment with my G.P, to discuss with her my recent diagnosiss.

After reading all my consultants letters etc she has decided to refer me to a Heptologist at Addenbrooks Hospital.

I am hoping that this is a good thing! ?

Does anyone know if Sjorgans syndrome is conected in any way to PBC?

Thanks everyone x

[kathjean]

Hi everyone. I am happy to have found you here. Someone to converse with regarding the PBC the doctor informed me of last week. I have only had blood test ran so far and will have a CT liver biopsy performed this coming Friday. Meanwhile I am trying to find and absorb all the info that I can before the confusion, memory lost sets in :>). I do have several questions but will ask them after I do a little reading here. Once again thanks for providing a place for all of us to communicate with one another

[Wendom]

Hi there sooo in reply to your recent question above on Sjögren's syndrome I myself was diagnosed with pbc whilst trying to get a diagnosis of sjogrens syndrome I have very painful saliva glands dry eyes and dry mouth but I don't test positive for it so they did the lip biopsy this too was negative but I'm told that pbc and sjogrens go hand in hand I've studied this since march 2011 also every doctor I have spoken to say they go together. my glands are so painfull I don't eat for days I even cry when they get bad that's how I know I have sjogrens also you could ask for the blood tests for this there called anti-ro and anti-la although 40% of people with sjogrens don't test positive my dentist and Ent Doctor both say I have sjogrens and that my bloods could turn positive At any time also I recently asked liver doctor why I had theses problems with my mouth and she replied it will be from Sjögren's syndrome And that autoimmune illness like to bring there friends hope this helps Wendy x