Is it true what my doctor said?

[HULK80]

So my question is my doctor said 90 percent of patients that test positive for AMA most likely has PBC . But I also read where this disease is rare. So can someone tell me if what my doctor said is true.

[HealthyChik]

Hi,

I wouldn't get too hung up on the percentage he quoted..but maybe someone will chime in with a reference for that,but I would just assume it's very, very common for folks with PBC to have elevated AMAs since it is a part of the diagnostic criteria. But keep in mind that other parts of the diagnostic criteria also have to bet met. Several people on this board have positive AMAs but ended up not having PBC. I think that scenario is rare, but it does happen. It is also possible not to have elevated AMAs but still have PBC. I'm sorry for the ramble, but just trying to be helpful. I know it's stressful while you're still trying to figure everything out. I think it's a plus that your LFTs are not elevated. Maybe your biopsy will be negative for PBC too. Hoping for the best for you.😊

[ninjagirlwebb]

AMAs are highly specific for PBC ; therefore, what your doctor says is most likely fact. They have been reported in very low prevalence (1-15%) in other liver diseases, such as nonalcoholic steatohepatitis (NASH), hepatitis C, and autoimmune hepatitis (AIH), but it is not known whether this represents a false positive AMA or the presence of very early PBC in conjunction with another liver disease.

Patients with positive AMA and no other clinical, laboratory, or histological evidence of PBC should be followed to determine if other features of the disease develop.

The second most common (but not specific) laboratory abnormality is an elevated alkaline phosphatase (ALP). Transaminases (AST/ SGOT and ALT/SGPT) may also be elevated, but less than 400 U/L. Once the ALP begins to rise, the degree of ALP elevation exceeds that of the transaminase elevations. The ALP is typically between 1- to 6-fold elevated and is usually less than 1000 U/L. GGT (gamma-glutamyltransferase) rises in conjunction with the ALP. Lactate dehydrogenase (LDH) is lower than the ALT, which reflects the observation that hepotocyte death occurs in response to bile salt-induced apoptosis rather than liver necrosis.

Other commonly encountered laboratory abnormalities include abnormal globulins, lipid profiles, cell differential, and positive ANA (antinuclear antibodies). Total globulins may be elevated, although typically not to the high degree that is found in AIH. Even with a normal total globulin level, the levels of individual immunoglobulin subclasess may be abnormal. The IgM is specifically elevated in PBC, although IgG is often elevated as well. IgA levels are usually normal.

Lipid profiles can be markedly abnormal. Triglycerides are not affected by PBC, but total cholesterol is often elevated and may reach levels as high as 300 to 600 U/L. Early in the disease process, the elevation is due to mostly HDL, but as time progresses, the HDL will fall and LDL will rise. In late disease, lipoprotein X may be produced, which has a similar density as VLDL and may be misinterpreted as an elevated LDL on automated densitometry. Lipoprotein electrophoresis can correctly identify the presence or absence of lipoprotein X.

Another peculiar (i.e., not understood) yet characteristic laboratory abnormality is elevated serum eosinophils, which is present in the very early stages of the disease and disappears after several years.

Other autoantibodies besides AMA are frequently found in PBC. The most common is antinuclear antibodies (ANA), which are present in 60% to 80% of PBC patients. Almost all (80-100%) of patients with AMA-negative PBC will test positive for ANA. The pattern of ANA may be any variety, although the anticentromere pattern is fairly specific to the presence of limited scleroderma (CREST) syndrome, and the PBC-specific ANAs (anti-sp100, anti-gp-210) will appear as speckled multiple nuclear dots or nuclear membrane patterns on immunofluorescence.

AMA-negative PBC (also called autoimmune cholangitis or autoimmune cholangiopathy) and PBC overlap with autoimmune hepatitis (overlap syndrome) are relatively uncommon and are often overdiagnosed variants of PBC.

[tinypixie in reply to ninjagirlwebb]

Thanks to ninja girl for that extremely and interesting discussion of all the abnormalies.

[HULK80 in reply to tinypixie]

Well I know my alp and alt arent elevated just my bilirubin and ama but a couple of people on her have said they had bilirubin levels elevated and ama and tested negative I guess I'm just trying to be positive. Is living with pbc bad? Like any other problems

[ninjagirlwebb in reply to HULK80]

10% of people have positive AMA’s & don’t have pbc. Also you don’t fit the general profile of a pbc patient. Majority are female & middle age or older.

You might be one of them in the 10%. PBC differs from individual to individual so you can’t really generalize experiences. Most people with pbc also have other autoimmune issues; that is a fact. So I guess the more issues you have, the more challenging it is. Having said that, I think I already shared that if you have pbc that is caught early & have a good response to Urso, life expectancy is the same as the average population.

[HULK80 in reply to ninjagirlwebb]

O ok and yea my doctor said If it is pbc then we caught it really early I asked him how he knew and its bc I dont have any symptoms like jaundice. Itchy skin, or upper stomach pain

[kingsnorth in reply to ninjagirlwebb]

I have lupus and sjogrens which was diagnosed several years ago PBC was diagnosed in February last year. I have always had positive ANA as l had childhood rheumatoid arthritis. I have positive AMA which indicates my PBC. I’m 68 and female. My profile fits PBC diagnosis but it went undiagnosed even though my lfts had been raised for 3 years albeit only slightly. I’m taking URSO and fortunately my levels are now within normal range.

[HULK80 in reply to kingsnorth]

My lfts are fine my bilirubin has been up and AMA everything else is fine I go to the gym almost everyday. I feel great to be hoonest

[kingsnorth in reply to HULK80]

It’s good that you go to the gym. I go aqua twice a week and a class at the gym once a week when l can but if l feel fatigued l always have a couple of days rest in between. I’m in Spain at the moment and walk at least 3 miles most days. As l have other autoimmune diseases I’m never sure which one is playing up. I don’t get pain fortunately. Just carry on doing what your doing and watch your alcohol intake l personally don’t drink and never have x

[ninjagirlwebb in reply to tinypixie]

Very welcome!

[Hidden in reply to ninjagirlwebb]

This is a very good, and interesting, article - but (always a 'but' isn't there?), I am wondering if the information on the AMAs is correct. From my understanding, a positive AMA can point to a number of conditions - it is the M2 antigen present in the AMA (shown as AMA-M2) test that specifies PBC.

Scroll down to the 'Clinical Information' section of the below link.

pediatric.testcatalog.org/s...

[HULK80 in reply to Hidden]

Thank you I know I was just positive for AMA and my doctor said if it is pbc the we caught it very early because I'm not having any symptoms at all. I did read it's very rare in men and I also read it can be caused by genes and my mom has lupus which is an autoimmune disease

[Gioielli]

I believe they have the potential to develop PBC but will depend on whether or not it is 'triggered'.