PBC Foundation
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PBC and Life Expectancy

I read with interest the previous thread with a similar title and so I decided to start a separate thread. I have much to say on this topic that might be helpful to patients, new and old, and for it to be lost in the body of another thread might limit its reach.

Where to begin...

I have lived knowingly with PBC in my life for 24 years. My mother was diagnosed with PBC then. I have lived unknowingly with PBC for many many years: more than just the 24 as she had symptoms long before she was ever diagnosed.

24 years on, she is still here alive and well, 62 years old and still kicking my erm, well... moving on...

In my time since then I have met well over 2 thousand patients in many countries around the world, including on three continents. I have read more studies than I can name and have witnessed more harm done by inaccurate information on the web than I can bear to see.

I have read that people with PBC can expect to live 5, 7, 7.5, 10, 15 and 16 years from diagnosis. I am sure all of these studies were well intended. I am sure many of them might have been accurate to the best of their ability (with a limited snapshot of what PBC is, etc) albeit very much within their limitations.

Reading these studies breaks my heart because they are founded upon really limited information. They create fear, confusion, and unnecessary upset. That said, if you really are going to google "PBC prognosis", what on Earth do you expect to find?

I've spoken with people believing this disinformation and were looking to put their affairs in order before they died (which they didn't!!). I've spoken with people cancelling holidays because they didn't expect to live long enough to go. Even now, we have people convinced they are going to die too early because of their PBC because of the stuff they find on the interweb.

I am looking forward to the day these people realise they will live longer than they thought. I just hope they realise soon enough not to waste a single moment more on unnecessary worry.

In our time at the Foundation, the oldest member (that we know about) passed on at 103, and not because of her PBC. My personal record is a patient who was 88 (and 3/4 she reminded me!!) and PBC wasn't one of her issues. I have met patients who have been diagnosed 10, 15, 20, 25, 30 and even 38 years: all very much alive when I met them.

Before we deal with the facts, let's deal with the nonsense.

You have X years from diagnosis.

When were you diagnosed? Were you diagnosed when you were yellow with Jaundice? Were you diagnosed early by accidental pick-up of raised liver tests? If you were diagnosed many years ago, the chances were the former. If diagnosed more recently, the chances are the latter is closer to your experience. And there are thousands of patients somewhere in between.

In the olden days, when PBC stood for Primary Biliary Cirrhsosis, it was called that because patients were cirrhotic before they were diagnosed. They would probably have been jaundiced and would have had many years of PBC without them (or their doctors) knowing it. So, in those days, an untreated cirrhotic patient would have had a limited prognosis.

Also, many of these studies were published when PBC still wasn't treated effectively.

You were diagnosed at Y point in your PBC Journey.

So, how long did you have PBC before you were diagnosed? Weeks? Months? Years? Decades?? Maybe you've had symptoms for years that have only just led to diagnosis. Maybe you were diagnosed at the very start of your abnormal liver tests. We will never know. Sure, we can tell early PBC from progressed PBC but that still doesn't give us a start date: day zero.

If you don't know, what chance does your doctor have of knowing this? If your doctor doesn't know this, then what chance does a random researcher crunching some numbers on their laptop going to have?

The answer is none.

None.

I have Stage X PBC so I know my prognosis.

No, you don't. You really don't. You may have stage X histology (cell change within the liver) but you do not have stage X PBC. There can be early disease and later stage disease but these are not the same.

Even with a Stage X histological finding, that number doesn't mean a huge amount in terms of prognosis. I have met patients who have been stage 4 for years (over 15 years) without progression.

I could go on and on, but shall stop here as this post is already long enough and we haven't even reached the facts yet...

Early diagnosis + Urso response = normal life expectancy

That is quite a bold statement. However, it would appear to be true. Of course, there are anomalies, exceptions and the like... However, what is coming through the data is that people who have an early diagnosis and who respond to Urso (UDCA) are living to normal life expectancy ages, equalling an age/sex matched population.

There isn't yet a scientific definition of "early diagnosis" but we know the difference between early and late PBC.

This leaves us the section of the population who do not respond to Urso. (this could be because they don't respond, because they don't tolerate, or because they haven't been given access to Urso in the first place). What happens to them?

Well, in many places around the world there is a second-line therapy available which has been deemed safe (when used appropriately) and effective in normalising or lowering liver tests. We won't know what that does over 20 years until we have been using it for 20 years, but the anticipation is that it will also prolong life expectancy.

Some places have been using fibrates, with different levels of success. Again, the long term effect will not be known until we get long-term data but knowing how successful Urso is, doctors believe that this will also have a positive impact.

Even if those therapies fail the patient, ultimately there is the possibility of liver transplant for many. Remember that these studies speak of progressing to death or transplantation.

Then we have a whole raft of new potential therapies going through the process of becoming a licensed therapy, many of which will be here in the next few years.

So, even for someone diagnosed today with PBC, we have no idea how long their prognosis is. We know it is improving. We know the majority of PBC patients respond to Urso and can have a normal life expectancy.

Looking at the old studies, there are other factors that come into play: nationality, for example. Access to medicines, transplant, insurance, etc all come into the picture.

My last point is possibly the most serious one I want to make in this post.

Where are you getting your information?

The PBC Foundation has worked hard, really really hard, to partner the best PBC minds around the globe. We reach patients in 78 countries and our information can be found in 18 languages. We have apps, magazines, an 70+ page compendium, webinars, workshops, abstracts, etc giving accurate, current and free information.

Join us. Read our information. We won't be publishing any such nonsense. We don't fill our community members full of fear (nor of false hope). Everything we publish is peer-reviewed by world-eminent multiple-time published renowned PBC experts. We do not have Dr Google on our Medical Advisory Board, and for good reason.

There is absolutely no reason why you wouldn't want to have free access to some of the best PBC information available. None. So join us: it costs you a few moments of your time. Get yourself the information you need: not just today, or tomorrow, or 5, 7, 7.5, 10, 15 or even 16 years away... but for the rest of your long lives.

We can't tell you where to go for your information. We can only support you when you get misinformation and help you unlearn what you have learned. We can't tell you who to ask or what to ask. We can only give you the best information available.

We are here to help, to serve and to improve the community affected by PBC. Use us: our knowledge, experience, expertise, access to the finest. That's all we ask.

Yours, as ever,

Robert.

78 Replies
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Thank you Robert. That needed to be said loud and clear and I hope, because of your words, some of our PBC family will sleep easier tonight.

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Well said robert thanks

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Thank you for this post Robert. It makes me feel a million times better and I know myself to avoid google for prognosis and there’s no algorithm for how anyone’s disease will go.

Sicy an informative post and this is the go to place for PBC info and support 🙌🏻

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I wouldn’t say here is the go to place: pbcfoundation.org.uk is the place to go.

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Of course pbcfoundation first the bearfacts and the app have been great for me. Will get round to attending a meet up when there’s one near me soon

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Thank you so much Robert. YOU ARE THE ABSOLUTE BEST. I will sleep better tonight indeed 😀😀

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That is awesome & we all needed to see this. Your words will bring peace to many PBC hearts. Thank You🦋

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I believe in only searching sites I can see are credible. For my breast cancer, I received much info from breastcancer.org. For my lupus, it's the lupus foundation, etc. The amount of varied info is staggering & I will always confirm findings with physicians.

We are especially vulnerable when our heads are spinning from a recent diagnosis.

I don't go about any treatment (natural or otherwise) very lightly. I have to see proven facts. That being said, I've learned in dealing with 3 life changing illnesses, you've got to have good Drs in your court. Drs who are willing to think outside the box & be open to all treatment possibilities (natural or conventional)

Peace,

Jules

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At last. Some common sense. I have heard so much doom and gloom stories on the subject and it is depressing. Thank you for your comprehensive post Robert. Hopefully it will go some way to allaying the fears of many. 😊

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Well said Robert thank you.

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Well written Robert, I am one of the PBCers who thought the worst when first diagnosed as doctors said I would need a transplant within 10 years if I lasted that long (no Urso at that time) But here I am 30 years later and still doing ok and still no transplant. Regards Doreen

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Thank you Robert for taking the time to explain to all PBC patients on this forum. I’ve been a member of the foundation since 2010 my consultant told me about the foundation when I was first diagnosed and gave me contact details to reach out to the foundation. The help and info received was second to none. Thanks again. Best wishes Denise 🙂

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Thanks for that insight Robert its put my mind at rest. I was diagnosed in February by way of biopsy. My lfts had been rising for 2 years and not picked up l have sjogrens and lupus so have blood tests regularly. I was put on URSO and fortinately my bloods are almost in normal range. I was so scared with diagnosis of pbc l have made myself ill as l have other autoimmune illnesses my nervous system hasnt coped. I wish l hsd read this when first diagnosed. I havent been staged and dont want to be l have mild scaring and mild fibrosis im 68 this year.

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Thank you Robert for taking the time to write your post, clearly written and easy to understand.

If it had not for the PBC Foundation 8 years ago I dread to think where I’d be now, and I I found you easily at the time because my consultant gave me your web information and told me to read it to learn about PBC. I wonder how many do, it could be a good thing if all those with patients did so..and told GP’s to read it too. (I remember I was annoyed with him at the time for giving me an internet site and at what appeard to be his lack of bedside manner , instead of telling me about my condition himself).

However as you can guess it was probably the best thing he ever did for me, once I was ready to accept what I was reading.

More doctors need to do this, or at least warn their patients about Dr Google now we are firmly in the age of technology.

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As a newly diagnosed patient, too ‘scared’ to chat on the forum yet, this informative post has eased my anxiety and brightened my weekend. Thank you Robert -Cx

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Hi Corrsy, never be afraid to chat on the forum. It is the best way to answer any of those niggling questions you may have. Even if you feel a little down you will find posting about it will get you lots of support and you will realise there is no point worrying alone. So welcome to the group. And remember there are no stupid questions or suggestions. X

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Thank you, Robert! As always you say it like it is. From the start of my PBC journey I was given PBC Foundation leaflets and website addresses by my GP and the Hepatolgy clinic as a source of reliable and accurate information. Through the foundation I have met other people who have had this disease a long time, heard their stories and advise, been to a forum and met you, and have read many posts on this site where support and experiences are shared, but most importantly learnt the facts about PBC so why go anywhere else?

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A Marvellous piece Robert 😊 thank you 🙏 x

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I feel so happy and positive after reading your wise informative words . Thank you . Perhaps you could publish it in the news letter .

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Thank you Robert, this has informed me and reassured me. I am a member of PBC foundation and find the information there extremely helpful 😀

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Thank you Robert for your compassionate and excellent post. You and all the people and volunteers of the PBC foundation never cease to inspire and comfort. Thank you for all your hard work and commitment.

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Wonderful, wonderful ass-kicking post, Robert! Well done.

Please re-post, every so often, especially when it is obvious that someone on here has either read something ancient via Google, or (even worse) been told a load of rubbish by a friend or (even worse, worse) by a Medic who isn't up-to-date. [As I've said several times on here, there are 4 GPs in my local practice and only one of has treated and really knows about PBC].

Thanks again! Gritty

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Sorry to bother you with this, but I have had the PBC app on my phone for some time. When I click on “news”, there is none. I thought this was how we get to Bear Facts. Or do we have to go to the ink each time?

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***link

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Good Q. This isn’t how you get BF. That should come by email. I’ll check what happens in the news section.

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Thanks! Nothing on the compendium either. 🦋

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I was told on my 60 birthday all that was said was you have this condition you take these tablets you will be ok. Google it I was sent to a gastro he said the same thing plus he did not seem to know anything about it .although he gave me urso. If you read some articles on the net you would get a gun and shoot yourself So best not look I am at a small surgery and I told one of the doctors this

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Thank you for this information. I went back a few days to read other posts and noted that one, interestingly enough, was written the day I went in for my annual checkup. My specialist - who has been treating PBC for many years - said, “We used to have a chart that showed patient progression, and we would show them. But now with medicationS and treatmentS (yes, I am emphasizing the plural), we don’t anymore. Because. They. Just. Don’t. Progress.”

I’m fortunate to live close to the Mayo Clinic in Rochester where I went shortly after diagnosis for a second opinion. And my doctor (Nicholas LaRusso) said, “I’m going to look you in the eye and tell you that yes, you will die. But NOT from PBC.” He went on to say that there are many treatments available - one of which is a liver transplant, which is one of many, many options available now - and it is a life saving procedure. He happened to be in the room when Mayo did its first transplantation surgery - on a nun with PBC - and she went on to live many more years.

So Robert, please keep talking more. We all need to hear the sanity through the clutter.

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Thank you so much for the article. I was diagnosed in 2015 but had it a few years before. No symptoms except the numbers. This forum has been an absolute blessing. Even though I do have to think about PBC when I take the meds, at least having good information gives me more hope.

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Thank you Robert for your clear reassuring words

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Thank you so very much for your post and reassurance. Not only does it help me but also my family who worry so about me. I will definitely share and I’m very grateful for your words!!!

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Hi Robert.

Thank you. When I was diagnosed (after years of symptoms) I didn't know about The PBC Foundation and I'm sure like many others looked online for information. There really is scary worrying statistics out there stated as pure facts.

Finding the Foundation definitely helped give me reassurance and a sense of community, knowing there are other people not too far away that have it made it feel a little better.

Thank you- take care

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When I was first diagnosed I was very frightened but I found the PBC foundation and that is all I need. I belong to Facebook support groups but I found that what was being said made me very depressed so I don’t bother now.

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I totally understand. I belong to 2 other support groups as well. I have come to the conclusion that this is the best place to be. The main issue I have is people determining that someone needs hepatologist vs GI. My thoughts are if your dr is taking good care of you why change drs based on other people’s opinions. A lot of controversy I’ve seen is Hepatologist vs GI. There’s good & bad with both. There are most likely Hepatologists as well as GIs who aren’t worth the paper their degree is written on. I’ve had to try & scroll past those type comments due to the fact I see a knowledge GI. Having said that to say this, Robert does a great job at helping us with our concerns without influencing us one way or the other. And I know you appreciate him as well. 🦋

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I couldn’t agree more with you. I hate how people keep going on about how ill they are. They might be but it only frightens newly diagnosed. I finally had enough when pictures of blood covered legs was shown on 2 separate groups because someone was itching. I was very concerned that my itching was going to get so bad that I couldn’t cope. As it is I itch and get very tired but I’m doing fine and life goes on.

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I wish you good things🤗☀️

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And to you 😀

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☺️Tks!

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Robert, thank goodness for you, your mum and the PBC foundation. Your mum answered the phone when I rang the helpline feeling scared after my diagnosis some years ago, and I discovered she was the same age as me, had been diagnosed many years earlier and was doing well. What a difference that made! I've never looked back since. XX

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Hi Robert, thank you so much for this. I've read so many articles on here from so many lovely members which have all been helpful and informative but this really and truly helped. It's brought a tear to my eyes and a lump to my throat (not wishing to sound too dramatic) but it's finally cleared up many questions I had yet still to ask. I will continue to live my life to the full and cross any bridges when I come to them and not be constantly fearful of what the future holds. This is the best thing I've read since my diagnosis last year thank you again. Susie x

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Hello everyone,

I'm Natasha, and I work for The PBC Foundation as Grants Officer. My job is to apply for funding from various sources so that Robert and the team can continue to do the amazing work that they do to help people affected by PBC.

One thing that funders are keen on seeing is feedback and quotes from the people we help. There's some powerful testimonies being made on this thread that I feel could really help. With this in mind, are you okay with me using your quotes within applications for funding? Any quotations used will remain anonymous.

I look forward to your responses.

Natasha

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Do. (anonymously) if mines any use-thanks Natasha for the work. i do hope to meet ye all some time!

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Thank you Robert. I have one question. My Dr. Said my numbers where up. When I have pain on the right side. I called him to see if he could see me. He never called. Is this normal?

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Is pain normal? Is a dr not returning a call normal?

Message me directly and let’s see if we can chat because this needs more than a simple answer...

Robert.

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Robert i tried to send you. My phone is not the best. But I also know they told me I have no sodium which is kidneys. But still no specialist for that either. Bless you.

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Thank you!

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Robert

Amazing!!! Thank you so very much for this very positive information. I can’t tell you how comforting your words are. I so appreciate your posts.

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Thank you. That is really helpful and reassuring

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Thank you Robert for this article. When I was first diagnosed,it was indeed a worrying time.i take Ursodeoxycholic and alsoQuestron light which helps with the itching.itching was my biggest problem. I decided that mind over matter could be the answer I started doing jigsaw puzzles.

.

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Thanks so much Robert!!!!!

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I was diagnosed in 1990 because of my itching on Urdu since day one and holding my own

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Seems you’ve done very well. Always good to hear when someone has journeyed many years & still okay🤗

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Thank you Robert. Well said.

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Thank you, I feel happier already

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Thank you Robert ....as a newly diagnosed 60 year old woman i googled PBC and became very depressed, thinking i didn't have mush longer to live !! We were even going to cancel vacation etc !! When i went back to my Dr for follow up my doctor did tell me that i had nothing to worry about....mine was caught in the very early stage ( 1) ....he had already out me on the ursodiol and it seems to be working !! MY question is though, i had read that if a person already has the "itching " and pain in right side , and fatigue that the prognosis was not as good, and considered to be in stage 2-3 .....i have all 3 of them....i itch like crazy on my back and my side hurts just about every day, and i get " spells " where i'm so tired i can barely keep my eyes open even after a full nights sleep !!! On my blood work the ANA was negative, my liver functions were normal...only my AMA was double what it is supposed to be. What are your thoughts on this ??

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G’morning. In reference to what you read about stage 2-3 fibrosis with itching, fatigue, etc., this disease affects each of us differently. I am supposedly early 3 fibrosis and I have never experienced any of these symptoms. I have the URQ ache sometimes but other than that I’m full throttle every day😁. My best to you🦋

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I did neglect to say my alk phosphates has been elevated off and on ( mostly on ) since 2012......could that mean i could of had this disease since 2012 ?

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Blessed123...I honestly wouldn’t know what to say on that. I looked back to labs from 2014 forward. I found in 2015 my ALP was slightly elevated. Dr said nothing & I didn’t know to question it. 2016 perfectly normal. 2017 it hit. So I wonder myself. Not sure we can really know when pbc started. We don’t know how long we may have had it before our levels showed elevation. Mystery🤗

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Hi Robert, I read your reply a few days ago ..its stuck with me, I have mentioned it to others with different life long conditions they are coping with. A lot of simple practicality in your words. It has helped enormously in my thinking about having this condition. Second year in for me, and gradually I have stopped feeling panicked. It really does come to pass that the fear subsides so I would say give it time-as you say- on the whole, we do have time. I stopped constantly googling...and started just getting on with other stuff-giving that my energy. Taking the meds, living healthily, accepting when I needed to stop doing just that. So far so good or not so good -but keeping going! That's all I need right now -and inspirational people like yourself here on Health Unlocked which has been my core help many times. I do battle depression, like many but focussing on the good stuff, and goodness in others, and also ways I can reciprocate -pure gold! I am also AMA negative so there's a little suspicion it might be PSC. Nothing confirmed. Something many of us experience too is waiting for an answer to the mystery of it all. I also suspect the industrial environment in East London I grew up in, may have aided development of my condition, so I am curious if anyone else in E.16 has PBC?

All the best,

Anne29

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Thank you so much PBCRobert, Reading your information was a real relief for many on this thread including me. More people die with this disease than from it, was a relief for me to hear. I know that I have had this disease for many many years before diagnosis. Probably in my 20's when I began struggling with horrible attacks in the middle of my chest going straight through into my back and debilitated me for several minutes before releasing. Not had one since diagnosis and going on Urso and this last visit my Gastro/liver doctor said, you are doing great we can move to once a year appointments instead of every 6 months. I am now 67 live a full life, no longer afraid and I am loving it.

One thing I do want to say about getting your final plans together, it is never too early to do that and not because of PBC. Everyone should do this no matter what. Nothing is harder on the family than not knowing someones wishes in the end and having it written. (legal document) Thanks for listening.

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Robert my wife's journey with PBC 36 years ago she turned yellow with Jaundice and was extremely sick, she was diagnosed with Non A Non B then later this was changed to Hep C so we were careful with our hygiene, Then a new doctor advised us it was PBC and put her on new medication Ursofalk 500 mg morning and 500 mg night she weighs 50kg that was 16 years ago. The same doctor is still locking after her.

She now has chronic liver disease Hepatic encephalopathy, Water retention ascites, Jerking movement some times requires me to feed her, esophageal varices bleeding "four operations to stop the bleeding" causing a drop in hemoglobin down to 76 last week in hospital one unit of iron and four units of blood, and then we have the other problem serum ammonia in the blood generated in the bowel causing her to be almost in coma just sleeping all day no food or medication then the next day she may be well enough to eat.

To clear the toxins I give her 20ml Lactulose laxative once a day and a special antibiotic rifaximin.

She also has low sodium levels.

So full care at home with help, her best friend had PBC at the same time she died a few years ago from kidney failure.

Judith Toohey Sydney Australia

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Thank you Robert.

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I have PBC over 20 yrs , i’m 71 , i’m just going to get my first Endoscopy band ligation , but it’ll be done in the hosp on Mon Oct 1 , my Dr saw 2 with some red dots on it so its at a dangerous stage , i cant wait to get this done , i’m nervous till its done

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Arlie...sending prayers & hugs 🙏🏻☺️

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Robert do you know anyone taking Milk Thistlle or familiar with this

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Yes.

I haven’t seen any scientific data that it helps though I have heard anecdotal evidence.

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I was wondering , i had a endoscopy ligatation banding , than God just 1 , after 20 something yrs

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Arlie...you doing okay?

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Thank you for sharing this. Newly diagnosed 2 days ago. Thought my life was over. Might actually sleep tonight 😀

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I hope you slept well.

If you have joined the PBC Foundation you will gain even more knowledge and insights.

Yours,

Robert.

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Yes,thank you ,I did sleep well. I have so many symptoms happening at once, I'm not sure what's going on 🙈

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Thanks for this post! Wish I had seen it a month earlier..lol. Being newly diagnosed, of course I googled "Prognosis of patients with PBC", and was a bit surprised at the shortened lifespan that was predicted. After countless hours of reading and talking with my doctor's, I too have come to the realization that I can definitely lead a long healthy life. I'm sure your post will help many newbies. Such good positive information! Thank you again🙂

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Again, this is where joining the Foundation (for free) can really help you and others AND miss out the middle man of google (mis)information!!

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Thank you this is the most sensible information I have read.

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Thank you ....

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Thank you for the info. Robert, just found out i have PBC in april, and scared to death with people telling me i'm going to die soon. Was on ursodiol for a few months but had side effects, doc took me off it for a month, now he wants me to deside if i want to try ocaliva. i dont know. scared and want this PBC to just go away. i need info and help to ease my mind.

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Uggg,

Please join the PBC Foundation.

pbcfoundation.org.uk

From there you will find lots of reassuring information. You can contact us or me directly (we can use skype, whatsapp and facetime for non-UK patients) to answer your questions.

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Thank you Robert! It is needed and clear Information.

Though, of course we have individual differences,we need to rely on prognosis and action that comes from scientific studies and observation.

As I understand it, since Urso Has been used Prognosis For those who react well Has drastically changed. I’m grateful to be one of them.

I was first diagnosed in 99 and probably had it for a while.I Reacted emotionally as expected given the prognosis at that time. However,responded well to Urso. . My fatigue eased .i did Develop irritable bowel,Probably from the Urso but it responded well to probiotics.

Nobody would guess that I have this disease by looking at the way I function. I’m 77, as of next week.I’m still working part time and have been leading an active life.I am much more bothered by tendon tears and osteoarthritis than my liver.I realize that I am lucky.

I was very relieved to learn recently from my doctor and what you tell us About a normal life expectancy In such cases. It Sure lifted a weight off my shoulder.

When I was first diagnosed I was devastated. I turned to the PBC Foundation and joined the Canadian PBC foundation.It has been invaluable to have not just the information but reliable scientifically backed information. Thank you and thank the foundation!

This illness was not caused by anything we did .We may or may not be able to slow its progression. However I truly believe that we should Do What is within our control and do our share. we do have some control over how we live our life with the disease and our attitude.

Best to all of you and thank you again Robert and the foundations!

JUdith

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