I'm 49, female and my gastroengerologist has quickly made the PBC diagnosis based on positive AMA (84.4 units , pos = >24.9), elevated AST (44, scale of 0-40), ALT (38, scale of 0-32), and high IGM 730 (scale of 40-230). My ALB and BIL are within acceptable range and three separate tests have also shown normal ALP levels (latest was 89, scale of 42-155). SED rate = 66. Recent bloodwork has also shown increased rheumatoid factor. The reason I'm asking is because my Rheumatologist disagrees, and says without the elevated ALP, we could be looking at a different disease. I'm new to this and have read several articles which point to PBC given elevated AMA and liver enzyme tests, and that IGM may be used to help confirm the suspicion of PBC. An ultrasound last month showed a normal pancreas, left kidney and liver. As per symptoms, I was highly fatigued but my energy level is much better now that I have been gluten free for two months and have dropped 15 lbs. My hands are severly swollen, palms are red and the skin has become tight and dry. (My dermatologist says it is hand dermatitis.) I have no itching, but do have dry eyes, am thirsty and have Raynauds. Although I'm not totally on board with it, have been scheduled for a CT guided liver biopsy in 10 days because the Gastro beleives this should be staged.
Which blood work and/or criteria was used t... - PBC Foundation
Hi. My LFTs were all high including the bilirubin but apparently the most accurate way to diagnose PBC is with the AMA test as 95 % of cases have this raised. I had a liver biopsy to stage the disease but he basically diagnosed me before this. If the albumin and bilirubin are low that is a good sign even if it is PBC. They usually treat it with Ursofalk which helps. If they are saying it is not PBC though make double sure because the earlier you begin to treat it, the better and the raised AMA is usually a very strong indicator.
I am new to this disease as well, diagnosed last month so maybe some of the longer members of the group have more info.
Thanks for sharing, Skippy. Have you gotten over the initial shock yet?
Yes and No. I can't wait to have the next blood test to see what my results are. My eyes seem to be a lighter shade of yellow and I hope the Ursofalk is working. I have been eating healthy food (following the basic principles of the Liver Cleansing Diet as close as possible) and no alcohol of course (don't want to stress the liver any further). The good thing is I am pretty busy with work (I am a teacher) and this keeps my mind off the PBC. I was really worried at first as I thought constantly about how my 12 year old son and husband would cope if something happened to me, but then I thought anything can happen to anyone at any time so just get on with it. I find this site is a great place to chat about the PBC and get things in perspective.
Sometimes I feel a wave of anxiety come across for a minute. I found lavender helps, just a bit of oil on my pillow at night or on my collar during the day. Try and stay positive. Sounds to me like this disease is a long journey!
Like Skippy I am from Australia. I am 47 and was diagnosed at 38 so nearly 10 years ago.
At the time of diagnosis , LFTs were elevated and AMA positive although Bilirubin and Albumin were both within normal range. Apart from fatigue I had no other symptoms but gastroenterologist was convinced I had PBC. However the so called "gold standard "for definitive diagnosis of PBC in Melbourne is liver biopsy. Thus PBC was confirmed and staged at 1-2 and I jogged along for years without really thinking about it.
18 months ago I got a shock as bloods were significantly worse and Albumin was heading south. Consultant was keen to do another biopsy as he wanted to rule out other liver diseases and as he said ,plan for the future.This second biopsy showed stage 3 fibrosis but no other liver diseses. I know plenty of people on this forum have conflicting ideas about the necessity of biopsy but my consultant was keen because he felt my continually deteriorating bloods were not being manifested in how I looked/felt. So as I seem to be in a minority group that has not really responded to Urso, I am now part of the OCA( new drug)trial. I would really be guided by your Dr, JennerLayne .The biopsy does reveal a great deal about the liver's architecture and I believe is a valuable tool. Apparently PBC affects the liver in a uniform way so a sample is pretty indicative of the overall state of the liver.
Hope this helps in some small way and you are becoming used to the idea.
Regards from DownUnder !
I appreciate your response Karaliz, and really hope that the OCA works well for you (and all others who are currently using it)!
Thank you JennerLayne. Although I agree with you in theory- your comment below regarding how one feels being the best indicator of health- in my case,I really felt much the same which was why my Consultant was so alarmed when he discovered how significantly my bloods had deteriorated. In such a case further investigation is always warranted. Otherwise you are completely in the dark as to why things are getting worse but the person concerned feels pretty much the same. Hope this makes sense.
Hi Karaliz. I am in Sydney and when I was diagnosed my LFTs were very high (ALP 948, GGT 804, AST 337 and ALT 654) as was the bilirubin (45) The only thing normal was the albumin 41. Eyes also yellow. My liver biopsy showed late stage 2 early stage 3, signs of fibrosis but no cirrhosis (which is good apparently). Did you respond to the Ursofalk in the beginning or did it just not work at all? I have been taking it for 3 weeks now and my yellow eyes seem to be getting lighter but they are still yellow. Having blood test again in a couple of weeks so that will give more info.
Sounds to me that in Australia liver biopsy is pretty much standard practice. I know it's a bit painful but I couldn't have not staged the PBC as I would have always been wondering. I also believe more information, the better. My prof said there is new technology where ultrasound can stage the PBC. When I first had the biopsy he was away and another doctor sent me for the biopsy. At the time they used the ultrasound technique as well and he said the numbers for fibrosis were up which basically goes with the result. Some doctors however question the accuracy of this method. The professor I am with now though says he thinks it is pretty accurate.
He was also talking about using methotrexate with the Ursofalk if it does network, even though there is much debate on this combo. Anyway, you can only try and beat this thing using any means possible. It is good though when you have doctors that are interested and caring. Good luck on the trial. Skippy
Great to hear from another Aussie ! I agree that it seems to be common practice here to perform liver biopsy as a diagnosis and staging tool and like you I feel there is power in knowledge. As you've described your LFts were extemely high and I wish you all the best as the Ursofalk starts to work. Yes, I believe the Urso did work for several years and apart from fatigue I mostly forgot I had PBC ! 18 months ago as I described my bloods were all worse, particularly Albumin - 29 although Bili fine ( it takes a different course for each individual doesn't it ?!! ) . Had a fibroscan, MRI, ultrasound and then another biopsy- stage 3 fibrosis. Upshot- apologies if I'm repeating myself- My consultant has put me in a minority group that hasn't really responded to Urso for years now although he acknowledges bloods would be even worse if I was not on it ! Managed to get me into Obeticholic Acid trial that has shown favourable results when trialled in small groups overseas. There are 3 arms, 5mg, 10mg and placebo. Dr and I suspect I am either in placebo arm or it's not working as ALP 597 ( ALP 524 just prior to commencing trial ). Anyway, a trial is for the greater good so as long as it proves beneficial for the majority , that's the main thing. Very interested in your Dr considering using Methotrexate, a drug I've seen used for other autoimmune diseases - please let us know how you fare with the Urso. Thoughts and good luck coming to you from rainy Melbourne !! Karaliz
Will definitely let you know what he decides on after the next visit 3/6/13. The methotrexate suppresses the immune system which I suppose makes sense as a way of keeping the AMA antibodies at bay. If the other acid works and you are on the placebo hopefully they will put you on that. There is so much great research going on out there and with the success of liver transplants and all these days, the prospect looks much better. It is great though that you think of the rest of us by going on the trial. We all need to work together and this site is such a fantastic place to share information. Weather in Sydney is sunny but cold!
I presented with itching and also at the time fatigue.
My LFTs were checked and said to be abnormal so more blood work was done at a slightly later date and my LFTs were slowly rising still. I was then sent for a scan and it showed pretty much a normal liver.
My bloods were apparently saying my liver was a bit inflamed. I saw a gastro several months later when my LFTs were said to be 'deranged' by that time (I had a natural slight dip before I saw the gastro).
I had the AMA and ANA blood work at the hospital. The AMAs were positive, the ANA's negative. So I got the diagnose of PBC.
Fatigue seems to have long since left me and Iget occasionally tired later in the day if I've had a bad night of itching as I still itch but it is confined to night time.
I had fatigue last summer / winter prior to starting my doctor visits but it is mostly gone. I am convinced it is due to eliminating all alcohol and moving toward a gluten-free diet.
I still get fatigue. Not sure if I agree about your theory regarding diet as I hardly touch alcohol for example my last alcoholic drink was my birthday in January, As for a gluten free diet I have yet to find any of that food type that does not inspid. Any suggestions?
I feel like i have really been keot in the dark. The only thing i can say is that my lft blood test showed raised levels i was sent for another, then a scan which showed a reasonably healthy liver, then a biopsy which then showed that i had early stages of pbc, given no info and sent on my merry way!! Just told that they believe it will be slow progressing! Little comfort
I feel for you and the others here who believe their doctors aren't providing thorough support. I thought my Gastro was quickly over-reacting with many tests, and confused by the Rheumatologist's comment of 'a different disease'. I suppose I should be relieved there are multiple doctors invested in my health and just move forward.
I found out via a blood test for Rheumatism. Seems Likely I have had it for some time prior to that result. Indeed I had been complaining about fatigue etc but as these symptoms were also common in diabetes and Thyroid(especially) was told to grin & bear it. Now I am told that it could possible be hereditary as two of my maternal cousins(sisters) have both died from it.
Hello once again.
Well here in England if one has a positive diagnose of PBC via AMA blood test along with symptons of it, then a biopsy isn't normally necessary.
I've never had a biopsy and wouldn't myself as at the end of the day I can't see why staging needs to be done. After all it won't change treatment of PBC and currently there is no cure.
I personally am not bothered about stages of PBC myself, I'd rather go along with how I feel and also how the bloods are getting along.
PS I was diagnosed with PBC end of 2010. Started itching earlier that yr along with fatigue.
I truly hope I will become more like you Peridot, ---- having the ability to allow your health to dictate how you feel rather than a stage #.
I have to agree with this. I have my good & bad days but am still working fulltime at my age 63. Yes I do have sick days but have an understanding boss. There is no cure and it could be years(not that I have that many years left) before I get worse, if ever. though the doctors here in England hardly ever come across this disease at least they don't push you into something you may not want. I see my consultant once a year and he never talks about levels raising etc
I went for a routine NHS check last September, this involved routine liver tests, I was more than confident everything would be normal. I was gobsmacked when my liver results were deranged. I had high alk phos, further tests showed ggt was abnormal, from that I had immunology tests which proved positive for AMA and ANA, the positive AMA along with the high alk phos were enough for my consultant to give a definitive diagnosis of PBC, a liver scan was normal. No biopsy was required as I was positive for AMA with high alk phos.
I feel wonderful! Diagnosed last year, bloods all high, iron, vit d, k & potassium all low. A year, some blood transfusions, Urso, steroids, calcium, immune suppressants, dexa scans, every test under the sun, brilliant care and attention & constant monitoring and things are looking up. Working full time again in new job involving a lot of travelling. Hopefully it keeps up!! One day at a time, enjoy every moment and try keep smiling
AMA is the internationally accepted diagnostic tool. A positive AMA carries a 95% accurate diagnosis of PBC, irrespective of symptoms or liver damage.