Hello, I have just got back from
Hospital, my wife (42) has just been told she has pcb - she went in as she was jaundice, she has very high bilirubin levels at the moment, she has not started any treatment yet as we have to wait a couple of days for liver biopsy results. Does this mean because she is jaundice that it is at an advanced stage? Or does the treatments mean she will improve, at the moment she has very little energy.
Well, jaundice isn't a good sign, but wait and see what the biopsy shows. Also what her other liver enzymes say too. The liver is a resilient organ. Please keep us posted. Lots of great people on this forum who are a wonderful support.
Stella
Hi Mark01823
Really sorry to hear that your wife is unwell, it must be a worry for you at this time. However it sounds like the medical professionals are doing their best to establish what is going on for her.
My diagnosis of pbc was found by accident after I had had an operation to remove an infected gallbladder. The initial diagnosis of inflamed gallbladder was established because of severe pain in my right side and high bilirubin levels. It was explained to me that the high levels indicated a blockage in the bile ducts. After having the operation my liver function tests and bilirubin did not reduce as the Consultant had expected and after further tests I was diagnosed with pbc last July. At the time I was very tired and probably a little unaware of how ill I actually felt.
I have been on Ursofalk since diagnosis and although it took me a little while to tolerate it, I do feel less tired and possibly more aware of not overdoing things. After seeing the Consultant in November I was advised that my liver function tests had improved slightly (still not normal, but better) and my bilirubin levels had reduced to nearly within the normal range.
So I guess what I am trying to say is that the high level of bilirubin may have another cause which no doubt the Hospital will be investigating. It may be as in my case that the high level did not confirm an advanced stage.
This site was other than the pbc foundation was the best source of information and support when I was diagnosed. So you have found the right place and no doubt there will be other people who will post who can share their knowledge and experience with you.
As for the changes I have made since diagnosis, I try to eat healthier, get regular exercise, I have had to make some decisions about changing my home/work life balance, and now make real efforts to reduce the amount of unecessary stress in my life.
I hope you get the answers you need quickly, and that your wife gets the right treatment. Please do get in contact with the pbc foundation as they are a wealth of knowledge on this condition.
Best wishes to you and your wife.
🙂
Hi Jemlola,
Can I ask what your ALP, AST, ALT and Albumin were and are?
Thanks
Alison
Hello, I've not asked for these yet, will know more on Tuesday when we hope to get the liver biopsy details
Hi Alison600
I do not have the original figures from when the Gp initially diagnosed an inflamed gall bladder - but I was advised that the bilirubin level at this time was high. My ALP about a couple of months after gall bladder removal surgery was 250, my ALT was 21 and bilirubin had reduced to 5. I was prescribed ursodeoxycholic acid in July 2016 and when I returned to see the Consultant my ALP had reduced to 191. The Consultant advised me to continue with the urso at the same dosage. I do not have the figures for Albumin or AST - I am due to return back to see the Consultant in a couple of months time.
My auto anti-body screening showed that anti-mitochondrial antibodies were positive with a titer of 1:640. About four years prior to this diagnosis I had had a number of medical investigations regarding generally feeling unwell, loss of appetite, and fatigue. These had come back inconclusive and I think that my diagnosis was kind of by accident as a result of routine blood tests after an operation. The Consultant actually said that the pbc might have contributed to the inflamed gall bladder.
Ok thanks. My ALP is quite high, was 738, but has dropped to 360 after 3 months on URSO. Just wondering if any ones else had an ALP that high and had it actually return to normal. Thank you for your response and am glad to hear your results are falling in line.
Alison
Hi Alison
Your results appear to have dropped significantly. I think it is hard to completely interpret the blood results, as maybe like me you may have made changes in your life due to the diagnosis. In my case I have started to look after myself more in terms of my diet, increasing exercise, going to yoga and no longer drinking alcohol ( not that I drank much before). I am sure that some of these changes alongside the medication may have contributed to a reduction in inflammation. On the advice of other people on this site I tend to now just go off how I am feeling. I suffer daily with nausea, and fatigue can really set me off course. I also like today feel like my joints are very creaky and I generally feel achy. I just try my best to look after myself, and to stay positive. I guess it is all we can do.
Stay well
Stick with it, my whole life fell apart on first diagnosis and I wasn't easy to live with, my husband has been my rock and listened, through at times floods of tears, I too was jaundiced and once on the treatment things got better - I still show signs of a slightly tanned skin through the winter but that just makes me look well. I am now coming up to seven years and with the medication and strict diet control, you need to be good as your liver has to cope with everything, things are looking good I work full time and although energy levels slump I think I am in a good place at the moment. Just try to remember that there is a life away from PBC you just have to push on with positive thoughts.
Hi Mark01823
Sorry to read your post, it is a distressing time for you both.
Ktltel and jemlola have given good advice. Wait until you have your full diagnosis and prognosis from the hospital. Once the liver biopsy confirms PBC your wife will probably be given Ursodeoxycholic acid (mine is URSOFALK). There are other blood results that will be taken into account such as ALP (akaline phosphate) and AMA (antimitochondrial antibodies) in connection to PBC. If you are researching on the internet stick to approved sites, some can be a bit scary with old information. The PBC Foundation members section (free to join through the icon above) has a compendium which gives good information as well as back copies of their Bear Facts magazine which has some useful articles from professionals specializing in PBC.
Each of us with PBC seem to be different in some way however once treatment has started most of us tend to improve. Some are non-responders to URSO but this year a new tablet is available in England called Ocaliva, it has been available in the USA for over a year.
You will probably need to make some adjustments to your life, at 42 I suspect you have been leading a full and energetic life. You will find your own levels and some days will be better than others however I have the impression that you are a very supportive husband and I am sure you will not let your wife do more than she should, certainly in the early stages.
Please do keep in touch with us all on this forum and let us know how your wife is getting on.
best wishes
diagnosed 2006 but probably had PBC from mid 90s - still going strong!
Thanks for your reply
Checkout the actual 'PBC Foundation' website (they host this site on 'Health Unlocked' and the link to their official website is at top of the page). You can read all the info on the site, and talk to their trained advisors - see the email and phone details on site - they are lovely, well-trained and so helpful. You can also find out if there are any PBC support groups in your area. If you join (it's free) you get a handy file of all the relevant info, as well as access to more stuff online and their quarterly mag 'Bear Facts'.
Don't read much online until you have checked out their site, as much is out-of-date and overly scary. It's also worth checking the British Liver foundation as they have lots of help and a DVD on PBC.
With the development of Urso, (and the UK has just had the go-ahead for release of a new drug for folk who don't react well to urso) the problems of PBC have diminished, and hopefully now it's been noticed in your wife, with treatment any symptoms she may have had - without realising (tiredness, joint and muscle aches, itching etc) - may subside or disappear, and the Urso also slows down deterioration of the liver. You will get lots of tips on diet, exercise etc, and the best thing, initially and onwards, is not to worry. Have fun, de-stress, get your wife to do things she loves that make her happy - PBC is an autoimmune condition, and all such conditions thrive on stress: so the answer is to live life to the full, enjoy oneself and tell these conditions where to go!!
Thanks for your reply
Hi Mark, sorry to hear about u'r wife. I think the key is to take it one step at a time and try not to worry too much as stress doesn't help. Later on once things settle, u can (if u want to 
) start doing a bit of research on autoimmune disease and how healthy diet can help. I have bought an excellent book, "The immune system recovery plan" by Susan Blum, I highly recomend it
Hi,
In 2010, my mom then 60, started feeling nauseous, with no appetite and her doctor ordered a complete blood test. The result was liver enzymes over 2000, bilirubin high and she was jaundiced... immediately she was admitted at USC hospital, where she was tested for everything possible, with biopsy that came back inconclusive, because of the severity of liver inflammation. All her tests were negative to hepatitis A, B, C, PBC, PSC.. the culprit turned out to be Lipitor (cholesterol medication), and she was put on an urgent liver transplant list. Finally, her diagnosis was Acute Auto Immune Hepatitis triggered by Lipitor. Thankfully, after long stay at the hospital and being treated with high doses of Prednisone and Imuran, she recovered and her liver now is quite healthy but she stays away from any medications, including over the counter ones.
I wanted to share her story because an acute jaundice could be caused by a reaction to a new medication or gallblader blockage, or a combination of PBC and Acute AIH.
Liver is amazing! It can regenerate itself, once the trigger is eliminated or found.
Wishing your wife speedy recovery and sending you hope and positive energy your way.
Do you know if acute gallbladder blockage can CAUSE PBC? In 2009 I have severe gallbladder blockage from gallstones. I had emergency surgery to remove my gallbladder. They told me they found stones that were 12 mm and larger. That normally the stones are about 4 mm l, and shortly after (2010) my symptoms started for PBC
Cstar, I don't know if the blockage could trigger your immune system to develop PBC or not. I don't know if there is any the correlation.
I can't help, but do talk to the 'PBC Foundation' advisors - link at the top of this page, or put your own question on this site for a wider response. You need to attract specific people to respond, and most on here are just responding to Mark's post.
Good luck, hope you get the info you need
Im ok🙂
Sharing, caring wife 😂
Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?
How do you know what stage you are at with PBC
Positive AMA
