do you always have PBC or is it something that you develop later on in life?

[mabbott]

some people are diagnosed early in some people later on in life so I was wondering if this is something but you always have but never are tested for until later in life or if it is something you develop later on in life? I'm just wondering if the prognosis for people who are diagnose younger is the same for those who are diagnosed later in life

[Hidden]

I think PBC is something that tends to start up all by itself. I say this as there has to be some sort of trigger which has yet to be defined. It's said that an infection and environment could play a part as well as other factors.

I know myself that I haven't had PBC my whole adult life. I did think that it might have developed a few years prior to the itch starting with me in early 2010. It was thinking back. I know I went through periods of being fatigued but I had never thought much of it. I was widowed before I was 30 and left to raise 2 young children alone so I had a life full of stress and worry at times. I then progressed from one notso good job into another but managed to get by. So whether all this had something to do with myself developing PBC I do not know.

The hospital consultant said on my first visit after starting urso that he reckoned I had had PBC 'a few years'.

It's not actually the norm, well here in the UK if you are not in the UK that is, to be tested for antibodies unless a doctor has adequate reasoning. My PBC was diagnosed due to myself developing itching and at the time I was fatigued.

As for the prognosis of PBC it is probably that bit harder to project. The Mayo Clinic do a PBC model which takes into account the LFTs to predict but you'd have to be medically trained to fully understand.

I think due to starting urso and the LFTs starting to decrease then it would be fair to say that that person had a better chance than climbing LFTs and no urso if they were responding to urso fine. (I'm not doing so bad.)

I think once the acceptance of PBC as this site is about has sunk in and you start getting on with life day-to-day and then time passes and you are still doing well, then you do start to not worry about it much. I don't. I wold prefer to spend the rest of my life living life as opposed to worrying about what might or might not be.

[mabbott]

but all of the sites are saying that most people will live until they are old and grey. And I'm wondering if that's because they were diagnosed later on in life. So what about us who are still very young? I'm trying to figure all of this out

[Hidden in reply to mabbott]

Well mabbott, I am sorry but I cannot really answer this question. Colette from the PBC Foundation states that she started to feel run down, etc back when she was in her 30s and she is still chugging along with PBC. There is a feature in the latest PBC Foundation 'Bear Facts' newsletter as a few asked questions like this.

If you aren't already a member, email or ring them and someone from there will email you the latest Bear Facts I am sure for you to read.

[liver-bird in reply to mabbott]

Hi Mabbott - I heard pbc described as a glacial disease meaning that it moves at the speed of a glacier ie very very slow. My mother had rheumatoid arthritis (another auto immune) and was crippled with pain so I am relieved to have pbc rather than arthritis. It`s not the greatest diagnosis but certainly not the worst thing to have. There`s a lot of mystery still surrounding pbc so even the experts can`t answer every question. I was diagnosed recently aged 66 but I don`t know how long I have had it - I think probably for quite a while. Try to accept it. Hope this helps.

[spoul]

Hi there has Colette not been in touch yet?

I don't think it's always possible to predict the prognosis for Pbc as everyone is different. I have met people younger than me who have it longer than me and they don't have cirrhosis or need transplant ....hope that reassures you a bit. X

[IOW-gal]

I was diagnosed in early 2011. My consultant gastroenterologist believed I had had PBC for several years before diagnosis. She couldn't give me answers as to why it had happened to me but did question as to whether any of my family had ever been diagnosed with liver disease, as this often is the case. Something to do with your genes. I understand that I do have some fibrosis of the liver. She also indicated that in her estimation it would not be something I would die of rather that I would die with it. I should add that I am 71 years old and going strong. I try not to worry too much about things but inevitably some days I really struggle. Fatigue is my biggest problem. That was the reason for my first visit to my GP who after blood tests referred me to the gastroenterologist in whom I have complete trust. Mabbott keep checking this forum but remember not everyone is affected in the same way. We are all unique and like any other disease are affected in different ways. Keep strong all PBC's and enjoy this wonderful weather we are having in the UK at the moment

[donna30]

Mabbott i was diagnosed at 30(so last september) just by going for a routine blood test. There will be hundreds of thousands of people who go through life not even knowing they have it and die from old age. I believe its a bonus finding out when were younger it does not mean your going to die earlier it simply means you can be on the Urso longer and regularly monitored and thats always a bonus. Finding out early also makes you try look after your body that bit better. I would not worry hun life is too short it is however such a shock at first i was a mess for 3 weeks but please bear in mind you are more likely to die with it than from it. I would have most prob not known till my late 50s/60s if i havent had been for a blood test i went as i found a small lump. If and when i get symptoms i will face them head on but until then i enjoy every day am none stop partying at the minute and have lots of travelling planned. You Enjoy your life hun with your children and please dont worry (easier said than done i know) but there is nothing worse for your body than stress. Always here to chat not been on this forum forever but these ladies are great. xx Please bear in mind people of all ages and stages are on here everyone is different if you read something scary remember thats for that certain individual so dont read certain things and worry. Enjoy your weekend the best you can xx

[Hidden]

It seems from what I've been told, some people live with this their whole lives. Some people are diagnosed. Some are not. The ones that are diagnosed sometimes never develop symptoms. I haven't yet except for itching quite some time ago that was misdiagnosed.

[Hidden]

A well renown liver specialist john chapman at Oxford told me that people are diagnosed and therefore treated much earlier now, in the past people presented at much later stages and therefore more liver damage was already done and transplants were the main treatment. Nowadays treating people in the early stages with urso and managing them more closely mean many more people live quite normal long lives. It is easy to read and believe all the scary stories on the websites but they need to be taken in context.

Have a good weekend

Lou

[Val02]

I was told the antibody developes in the body as a child or teenager but it can lay dormant for years and in some never go on to cause PBC.

The age PBC developes varies a lot, but if you are a "responder" to Urso your outlook is pretty good. Things are tougher for non-responders but new drugs are on the horizon for this group.

I was told the younger people develop it the more likely they are to have general autoimmune problems (me!) but otherwise everyone's journey/experience varies.

One of the problems with having PBC is the uncertainty of the future -

Take care and try not to worry.

[Junolee]

Hi there. I was diagnosed in May 2012, I was 45. I had a sudden death in my family the previous November and that seemed to have trigged something that manifested in jaundice. I had low iron, Malabsorption etc, had to get iron and blood transfusions. After much investigation (full round of tests 3 weeks in hospital, liver biopsy etc) they said I had PBC. At that stage I was thrilled to have a diagnosis and something to treat. My liver wasn't functioning well so to bring down the inflammation I had to take steroids which worked, as well as urso, various vitamins etc I now take an immune suppressant as well. I have been doing really well since. I would make 2 points 1) obviously had it some time because I was really deficient in iron, vit d, calcium, vit k, potassium though I had a really good diet, so something was preventing the absorption, I have since been diagnosed with osteoporosis and have attended a endocrinologist who says the PBC must be the initial cause. I had no outward symptoms until the jaundice. I still have little symptoms. I am always cold & hungry but other than that not much. Everything else is much better since the meds ie: sleep better more energy etc. 2) when I was 10 they thought I had appendicitis, it turned out I didn't but after tests I was referred to a liver specialist. My parents can't really remember why, something showed up higher than it should be? After further tests they were told it was nothing to worry about, just a slight abnormality which had no real consequences. My consultant now thinks this was probably Gilbert's Syndrome. The doctors think this is purely coincidence. I am not so sure