I'm a 50 year old male recently diagnosed with stage 3 PBC, my mother has/had it (stage 3 PBC) since 1987 and is still alive today.

[hopepbc]

My mother was one of the first people on ursodiol at Mayo clinic in AZ in the late 80ies and her blood levels have been normal since that first year on ursodiol and she is considered in remission from PBC. My bilrubin (probably the MOST important number when it comes to PBC) was 5.9 on 9/11/2012, very high, I convinced my Gastroenterology to start me on ursodiol on 10/30/2012 before I went to Mayo clinic 2 weeks ago on 11/14/2012 (because of my mother's great reactions to the drug) and my bilrubin had fallen to 3.0 in 2 weeks on ursodiol. I believe I have read nearly everything on PBC in the last 2 months and hope I can help anyone with questions and be helped here.

[mumofthree]

Welcome hopepbc,

Its really great news that both you and your mother have had such positive results from taking Urso. You've definitely come to the right place here.

I was told at the end of Nov 2010 by a gastro registrar following blood tests carried out by a rheumatologist that the bloods showed I had PBC...he then told me I could have 3 years to live....I was absolutely terrified and thought I would not see my children grow up... PBC was finally diagnosed at the end of Jan 2011 after having a liver biopsy. I found it very difficult to accept the diagnosis as I thought I just had arthritis which turned into what I believed was now a death sentence. I went into a spiral of depression and basically hid myself away...If I didn't think or read about it, it would just go away...

I plucked up the courage to contact the PBC foundation here in GB in May/June 2012 and eventually found this site....since then I have not looked back. It has been an absolute godsend to me...everyone is so friendly and willing to help. I do not feel so alone and now feel more positive and know I have a life to live.

I am sure any information you have learned will be more than welcome and as you say maybe someone on here will be able to help with anything you may need advice on.

Best wishes to both yourself and you mother

[hopepbc]

Thank you for the warm welcome Mum, BTW, I'm in great shape, I play tennis regularly and am doing my best to stay positive, but what concerns me the most is my initial high bilrubin levels, (which tends to show a advanced stage PBC and I assume that's where the doctors gave you the 3 years to live) can you tell me what your levels were before Urso and after?

[mumofthree in reply to hopepbc]

Sorry but I do not know 'the levels'. The consultant mentioned some figures etc when I was first diagnosed...but not really understanding what I was being told and being terrified, they did not register in my mind. The other two times I was just happy to hear him say they were improving, and they were almost normal. It has only been since finding this site that I have heard so much about the figures and that some people have actually requested copies of their readings. I have not returned to my consultant since learning this but will be asking for copies in future.

[Hidden]

Hello hopepbc.

Notice you are American and have looked on the Mayo website a few times since diagnose of PBC. (It is where I read about the HB count and the fact that in some people, women in particular it can be normal for them to have a blood result slightly lower than the normal range (I have had for some time).)

I have at present and always have since prior to diagnose had a normal range reading of bilirubin so cannot comment there.

I started on urso Dec 2010 and for the first 7mths mine did start to decline which didn't look bad at all (I don't think my readings have been high high since prior to diagnose Dec 2010 anyway). Then over the next 9mths they started to rise again but not overly. In 3mths (Feb to March this yr) they decreased and were the same and one was better than after the first good result on urso (Feb 2011). Having now been on urso almost 2yrs and having 22mths of blood readings at intervals I can say that I think certain times in the year mine are going to start to rise but then start to decrease again. Not sure if it is some seasonal thing as they seem to have been on the rise during the colder months of which we get a lot here along with rain aplenty in England these days. But I am apparently normal regards blood readings for one with PBC at present.

I have read that one can become remissive with PBC., that is where the condition simply halts and possibly never starts up again. Wonderful to read about your mother being with normal blood results for all that time. That is a very positive contribution to raise our spirits. Thanks for sharing.

[Hidden]

Welcome Hopepbc. Thank you so much for sharing your story. It is so important to hear about people who have lived with PBC for such a long time. It is positive stories like this that brighten our day. Wishing you the same success that your Mother has had. Again, thank you. I have an appointment to see my gastro on Friday. I am looking forward to hearing that I am responding positively to the Urso and Milk Thistle treatment. Have a wonderful day.

[hopepbc]

Thank you, I live in Southern California, I've always been in good shape and may have not caught my PBC early enough, the high bilrumbin is a ban sign which has me concerned. Does anyone have any anecdotal evidence of milk thistle working? My doctors warned me about going on crazy diets which people tend to do because sometimes they will take in things that the liver is not use to which ends up harming their liver. ALL I KNOW is my MUM (as my Brit friends say) has had stage 3 PBC since 1987, went on urso and it put it in remission and she's still alive today even with liver cirrhosis.

[Magnolia]

Hopepbc, I've been on ursodiol for almost 10 yrs, now. At the time of my diagnosis in 2003 my ALP level was over 500, and now it's in the 300's and has been at that level since taking it. I think I probably had this disease since 1987 or 1993 for their were liver elevations even then. It took years, as you can see for a dr. to finally get me a diagnosis, which came from the Mayo Clinic. I worry about this disease being passed on down to my children. This is a great site to come to for answers, these people haved helped me.

Magnolia

[hopepbc]

Mag, I luckily have results from 2 weeks on urso, my

ALKALINE PHOSPHATASE (ALP) 518,

AST 128

ALT 133

Bilirumbin 5.9

two weeks on urso

ALKALINE PHOSPHATASE (ALP) 308,

AST 136

ALT 153

Bilirumbin 3.0

I'm very happy with these numbers and I'm worried about my bilirumbin, I need to get this to 1 or below asap and high bilirumbin tends to be a bad sign, however I'm very hopefully with the quick and positive results from urso. I'm also aware that urso doesn't really have a full effect until 3-6 months use, hence I'm hoping for the best.

[hopepbc]

BTW, I also had ferritin levels of 1259 (a secondary of liver problems which show very high iron levels in the blood) drop to 714 in two weeks. BTW, blood levels seem to be the MOST important indication of what's going on within the liver, there should be a blog where we all compare and contrast blood levels, with different drugs, different stages, different dosages and different time spans.. I find this VERY important information as I notice many of the most experienced posters here do, as they check usage, dosages and different drugs, supplements and yearly seasons with their bloods levels.

[hopepbc]

This is what a Mayo Clinic blood test looks like, glad we are all friends here...

Blood Cell Count (11/14/2012 2:42 PM MST)

Name Result Normal Range

Hgb 13.5 g/dL 13.5 - 17.5

Hct 40.3 % 38.8 - 50.0

RBC 4.12 x10(12)/L 4.21 - 5.61

MCV 97.8 fL 80.8 - 96.6

RDW CV 13.6 % 11.8 - 15.6

WBC 6.3 x10(9)/L 4.2 - 10.2

Platelet Count 214.0 x10(9)/L 151 - 355

Coagulation (11/14/2012 2:42 PM MST)

Protime 11.9 Seconds 11.8 - 14.6

INR 0.9

General Chemistry (11/14/2012 2:42 PM MST)

Bili Total 3.0 mg/dL 0.1 - 1.1

Bili Direct 2.2 mg/dL 0.0 - 0.3

General Chemistry (11/14/2012 2:42 PM MST)

Albumin Serum 4.1 g/dL 3.5 - 5.0

Enzymes (11/14/2012 2:42 PM MST)

Alk Phos 309.0 u/l 45 - 115

Enzymes (11/14/2012 2:42 PM MST)

ALT 153.0 u/l 7 - 55

Enzymes (11/14/2012 2:42 PM MST)

AST 136.0 u/l 8 - 48

Special Hematology (11/14/2012 2:42 PM MST)

Ferritin 714.0 mcg/L 24 - 337

[hopepbc]

About a week ago I was very excited about my eyes clearing and my fall in bilirumbin, so I did what any American/Brit would do, I ate enough to gain 10 pounds in about 5 days. The next day I thought my eyes got a little yellow again and I called my specialist at Mayo, asking him if I could have overworked my liver by gorging and it could have shot my levels back up. He told me "it doesn't matter what you eat or how much, it really has nothing to do with it". I'm not sure WTF to think about that, however I'm not buying it, he might have just said it because he noticed I am in good shape and was worried about my weight loss, or maybe he wanted to get off the phone, or maybe it's true, however I know you are what you eat so I don't know what to think about his response. BTW I ate turkey (thanksgiving dinner for days) home-made spaghetti (American staples) and everything else in the account, at least in this house.

I see my Gastroenterologist tomorrow, I'm having my local Gastroenterologist here in Newport Beach be my quarterback and then going back to Mayo every 6 months unless I don't improve then every 3 months. I will diet try and exercise like I was, playing tennis every other day or so, I will try and get my head back in the game, I must admit this really fucked my head up as I'm sure it did us all, I think the initial shock is the toughest, I will get many blood tests AND BE MY OWN ADVOCATE.

I really think knowledge, this place, working with my Gastroenterologist and Mayo can do, it however I think it's important we share test results, I asked all my doctors over and over, if we can control our blood tests we are not controlling "levels" but our liver's function and managing the our liver disease. The doctors told me if the levels are good the liver is working. Some people have controlled their levels quiet well and I noticed they have not needed transplants and are still alive, my mom/mum is a great example of this, she has been doing this for at least 25 years, yet has no idea what she's been doing. I believe some of the very best information we can share is talking about what we are doing and the blood results we are getting from our actions.