Just diagnosed with PBC

[jewelsspeak]

Morning all, two weeks ago my consultant told me I have PBC. I had visited my GP in Dec with something not right with my tummy. Im a long standing sufferer of IBS and for weeks had not felt right. Was also suffering major palpitations. Following routine bloods some of my enzymes were risen . Repeats show further escalations and an ultrasound which was ok at which point I was refered to hospital. I also have been suffering with exhaustion. The consultant asked usuals questions how much do you drink, what tablets take etc etc. he carried out raft of blood tests (about 17 in all). I went back 2 weeks ago for results. He told me I have Gilbert's which runs only family but more so that tests conclude I have pbc. Shocked was an understatement. He said I need to have biopsy to stage illness. I asked what if biopsy said it wasn't pbc, he said he would be extremely surprised if it wasnt! Ihe was adament it is. I was so surprised with results I didn't ask half the questions I should have. My head is all over the place. This site and members comments and experiences have been so helpful. I am a female, 39 years old and have no idea what to now expect. my concern is that consultant has said I will be on medication daily rest of life and 3 mthly hospital checks ups which is fine , but worried as I have read the illness cant be stopped just progression slowed and in some cases for only between 10-15 years. I know everyone is different and what the worse case scenario is. Just interested to here how others cope and what things you might have changed to help with the condition. Also I had h Pylori five years ago and wondered if there was a trigger here. Research I've read on here suggest there might, anyone else had HP? Thanks

[Axl888]

Hi there, I had h pylori which was discovered around about the same time I was diagnosed with PBC. I was diagnosed in 2009 but probably had PBC for a lot longer. It took me a while to get my head around it, but I am lucky that I am quite a positive person and fairly sympton free too, apart from getting tired at times. Since being diagnosed, I have met and become friends with lots of people with PBC. We are all different and present different too. I have met three people who have had liver transplants and are all doing well. If I got to that stage, it would help me knowing these three people have been through it and come out the other side feeling a whole lot better. There are a lot of scary stories on the internet. I keep away from them. I listen to my consultant who tells me that as far as he is concerned, I will be collecting my old age pension (I am 49 years old), I listen to the PBC Foundtion and I listen to people I know who have PBC because they are experts that I know and trust. When I had my biopsy, I was in very early stage, even though the consultant said I had probably had it for a good few years. A biopsy can only show the stage from where the biopsy is taken though and might not be the same for all of the liver. PBC is not curable, but apparently very rare people die from it. Research is ongoing to try and find a cause. Some common elements have been identified but are not true of everyone ... eg smoking and hair dye. H Pylori might be a trigger as many people have it bt don't know that they do. Hope you start to feel better soon, once you have come to terms with it and have accepted it. The PBC Foundation promotes a positive mental attitude (PMA) and it certainly works for me. Best wishes X

[jewelsspeak]

Thanks ax1888 that's really helpful. The forums I am finding really helpful and it's good to hear from others that understand how you feel. I had HP for ages before getting treatment- this was delayed unfortunately as the hospital "forgot" to tell me I was positive. History of gastric problems so pbc just adds to it! Hey though life goes on, onwards and upwards an going to be positive !

[pluckyfilly]

I was diagnosed with PBC some several years ago, its not caused me a problem until I had food poisoning this last month when the specialist said "as I have a liver problem it would affect me twice as much as any other person" but until this time I have not had any problems I am aware of. About a year ago I was given a capsule to help my liver Ursodeoxycholic acid 250 mg and I have blood test since that say my liver is good, I am 75 coming 76 end of this month and female, I see the consultant twice a year - I have no idea from where or how this PBC came about in my case as I dont drink or smoke but did take anti inflammatories for arthiritis for many years. Mine showed in a blood test done by the consultant and he told me the prognosis was good, I hope in some small way this may help you, ..................regards Plucky

[Oidra]

Yes, we are all very different but the one thing we have in common is the shock of being told we have PBC. I was told at 60 but I feel I had it years before as I was not accepted as a blood donor in my 30`s but was too busy to find out why. I take 3 Urso a day , see my consultant every 6 months when he tells me which checks (and at which end) he wants done. I read the news in the Bear Facts to keep up to date and am very lucky that apart from that I have a very active life. I am now 72 and I will just mention as you are worried about life expectancy, I am possitive my Mother had PBC and she died of a stroke at 92.

[jewelsspeak]

Thank you pluckyfilly and oidra, both replies are really helpful and somewhat comforting. I am a person who likes to know every detail and I suppose that is my problem at the moment I am still waiting for biopsy and then results so won't know much more till then. It comforting to hear your experiences. Thank you for taking the time to reply, best wishes.

[Junolee]

Hi Jewelsspeak, I was like you and of course it is great to be informed and understand about our disease but now I take one day at a time and live every moment to the full. I am doing well now (diagnosed 10 months ago). I do and take everything my doctor/consultant tells me, have received brilliant care and support and feel very optimistic. None of us know our life expectancy, in our case we are luckier than some and learn how fragile and precious life is and can appreciate it more. After you get over the shock that is xx. Be well. L

[judyt]

And I am 69 with Scleroderma, Sjogrens, Rheumatic Heart Disease as well as PBC. I take loads of meds. every day but without them I know that I would be a mess, and possibly not even here any more. We are so fortunate to live in this time and get so much expert medical help. They don't know everything yet but the knowledge is vastly better than when I was a young woman and starting out with these ailments. I have lived with these things since 1966, brought up two children and now have 3 grandchildren. I have lived longer than my father did, catching up with my Mum and my little sister died 14 years ago. All in all I have been the least healthy of the whole family but good care has looked after me well. Take heart and follow what the experts tell you to do and you should do well too.

[melisab]

I was diagnosed with PBC 2 years ago and have not had any problems. I also had a biopsy but mine showed stage 0. The liver specialist told me not to read about it on the internet because there is not accurate information about PBC. I take URSO 500mg 2x a day as a precaution to slow down the progression of it. They told me that I didn't even have to take the medication but I felt better doing so. I know of 2 women in their late 70's that have had PBC for 18+ years and have no problems. I do whatever I can to keep my liver healthy. I take milk thistle, do liver cleanses and don't drink alcohol except on rare occasions. You will be fine!! When I read about the life expectancy of 10-15 years freaked out!! I have 2 little boys and want to live a long time for them! The specialist told me not to worry! Just have faith and enjoy life!!

[haventaclue]

I was told I had PCB last september by GP as a result of blood tests..

I got to see specialist 4 months later .

Despite repeated blood test coming back positive he could not give me definate diagnosis as he said I had normal LFTs . after scans cameras etc I will get to see this specialist again at the end of May this will be eight months.

Eight months to get a diagnosis .

All I want to know is do I have it or dont I ?..I am getting on with my life but its a long time to have something like this hanging over you Its difficult to stay positive

[Mememememe in reply to haventaclue]

I can identify with this, as I've still not been told its definately pbc.I guess it an be difficult to diagnose. My consultant told me to try the urso but if I didn't get on with it to stop,but since the bloods have improved he recommends I stay on it. I also felt it hanging over me, what was wrong etc. When I heard what it might be I wasn't devestated like some people have said, but unsure what I felt, in one way good to know, I hate mysteries, on the other having an incurable disease is not so great either. I've been having blood tests for over two years, so try not to worry too much, hopefully the specialist will give you clearer info than your GP. My GP didn't have much idea about the disease, so I'm glad I'm now seeing a consultant, and I'm also part of a research trial at the hospital, which means they checkme out regularly every 3 months.

[Magnolia]

Welcome Jewelspeak, My PBC, I am almost positive has been going on in my body for 20 yrs. No symptoms, except some periods of fatigue, until more than a year ago, the itching started. At this time I hardly notice it. I believe that the Ursodiol slows down the progression. You'll find this group to be of great help!

Magnolia

[jewelsspeak]

Thank you all for your comments, they are really helpful. This site is fantastic. I'm a keen runner which has had its ups and downs recently with me being so tired, my consultant says its important to continue exercising.I'm running the Manchester 10k again in May for a friend who passed away last year (for Christies in Manchester) but after the last two weeks i am going to split any fundraising and donate some to this foundation. Fabulous resource.

[Hidden]

Hi Jewelsspeak, I was diagnosed in November last year, the initial shock floored me but once you get over that as others have said life goes on as normal once again. I am lucky that I don't suffer from the itch that some of the other members of the forum have, I try to live each day as me, as opposed to living each day as a person with PBC. I have faith in my consultant and try to listen to the reassuring comments he has made.

[Rebekahw74]

I had pylori about 10 years ago. Very interesting. I also was diagnosed recently and blindsided by the diagnosis. I am waiting on biopsy results to find out what stage I am in.