Hello. I've been the proud owner of a AMAs for at least 10 years, but I have normal liver function test so the GI people don't want to see me.
I'm female, 49 and have been suffering from painful and slightly swollen joints recently, especially my knuckles (the PIP joints specifically) on both hands. GP has taken bloods which have come back with a positive result on one a sub-typed ANA test - Anti Ro52 (also known as SSa 52). My CRP bloods were normal and I have a feeling that a hand x-ray will also come back as normal. I do have dry eyes and have done for many years but not a dry mouth.
This antibody seems to be common in Lupus, Scleroderma, Sjogren's and Myositis but is also found in the healthy population. I do have dry eyes and have done for many years but not a dry mouth. Has anyone else one here been found to have this result, and if so which disease did it relate to?
Many thanks.
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gallnaemare
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I see you posted a while ago and no one has been able to help. I am not sure if the following will help however if no one else comes along the PBC Foundation (free to join) web site has a wealth of information and you can always contact them directly where they will try to help you as much as possible. Sometimes the weekend is a bit quieter on here and I hope someone with some experience similar to yours can chip in.
I have copied some text from the PBC Foundation's web site:
"The Antimitochondrial Antibody (AMA)
These antibodies, usually detected by indirect immunofluorescence, are now known to be directed against a group of enzymes – the pyruvate dehydrogenase complex – normally found on the inner mitochondrial membrane of almost all animal cells. These antibodies are very disease specific, but are neither tissue, nor species, specific. They are present in around ninety percent of patients with PBC. It has been shown that individuals with a consistent strongly positive antimitochondrial antibody in the serum at a titre of <1:40, but who have normal liver function tests, have a high probability of having abnormal liver histology suggestive of early PBC. Over eighty percent of these individuals will develop biochemical and clinical features of the disease."
also
"Clinical features
Up to 60% of patients are entirely asymptomatic at the time of diagnosis. In these patients, the disease may be detected following an incidental finding of abnormal liver biochemistry (LFT). Symptoms of PBC that may occur at any stage of the liver disease include fatigue, pruritus, pain in the right upper quadrant, indigestion and bone pain. Sicca symptoms and Raynaud’s phenomenon are common and may reflect an additional autoimmune disorder. Xanthelasma are frequently observed.
Patients with advanced disease may suffer the usual manifestations of portal hypertension or hepatocellular failure, such as variceal haemorrhage, ascites, jaundice or hepatic encephalopathy. PBC-related cirrhosis may be complicated by hepatocellular carcinoma. In patients with marked ductopenia, severe cholestasis may lead to malabsorption; deficiencies of fat-soluble vitamins; steatorrhoea, and weight loss.
Patients with PBC may also have features of associated conditions. Conditions associated with PBC include osteoporosis and other autoimmune disorders. Up to 50% of PBC patients have at least one additional autoimmune condition, most commonly Sjögren’s syndrome (~25%), Raynaud’s phenomenon (~25%), autoimmune thyroid disease (~25%), rheumatoid arthritis (~20%) or systemic sclerosis (~10%)."
Thank you for your expansive reply. I did a lot research 10 years ago when I was first found to have AMAs and I'm worried about them, they have persisted and they have been sub-typed to the M2 variety so I reckon I am in line for PBC in future.
Unfortunately at the moment, I do have symptoms which I find uncomfortable, including stiffness, fatigue, dry eyes and joint pain. I'm also aware that some of the 'healthy population' will have AMAs and Anti-Ro 52, but surely not many have both and remain 'healthy'? I think I'm going to be told that nothing is wrong again, yet I feel that the two are connected. The GI doctors said that I only need liver function tests every 1-3 years and I doubt I'll be referred to a Rheumatologist without a raised CRP or objective inflammatory evidence on my x-ray. I'll be sent away again and told to take Paracetamol.
hi again, I have stiffness and some joint pain. I find keeping to a clean diet helpful by clean I mean very little wheat, little salt, as little sugar as possible altough at this time of year with all the yummy treats that are offered it is not so easy, I keep clear of all fizzy drinks and have a diet rich in vegetables and rarely any meat. Although PBC is not a diet related disease I find and I have read on many of the forums that eating healthy foods helps the liver process which in turn helps us. I know over Christmas my diet will slip and I am pretty sure my body will react accordingly
And if nothing works for you I think you will have to ask your doctor to be referred for specialist advice from the Rheumatologist.
I have 6-7 different autoantibodies, and I am diagnosed with scleroderma, sjogrens, PBC and hypothyroidism. I also have antibodies for lupus and myosotis. The rheumatologist is not concerned about the last two unless symptoms present themselves. My anti ro is for the sjogrens secondary to scleroderma. You will know if you have sjogrens. My tongue is fissured and cracked, and I have had extensive dental work done as my teeth were crumbling due to the dryness. I wouldn't be too concerned about yours, it may well turn negative again, and if not would just be a watch and wait.
I too have AMAs, which were first noted in 1992, after routine tests - when I was feeling a bit run down following my mother's death (we were very close, and I nursed her). I was just told not to worry, but to have blood tests every year. I still have normal lfts, and am not diagnosed with PBC, as I have no other signs or symptoms and am generally very healthy for my age.
A leading PBC specialist, who I saw a few years ago (when a new-to-me Medic had tried to insist I did have PBC, just because of the AMAs!), says that blood donor statistics show about 8% of the population 'just' have AMAs, but most never develop PBC.
I'm in my 60s, and in the last year, I have noticed some dry eye issues, with possibly some dry mouth. I talked to my optician, who said most people my age begin to get dry eyes (and mouth): he definitely didn't think it was Sjogrens. The drops he suggested work well, and I've cut down my contact lens wear a bit. I've had one full set of blood tests since I noticed the dryness, and all was good. I will mention it, if I need to see my lovely GP … but she's always booked a fortnight in advance, unless one needs an emergency slot appt. However, from what I've read, I don't think I've got anything worrying.
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Who has Pbc and under active thyroid?
biopsy said early stage, elastography says stage four which is cirrhosis?
Could someone explain what some of the terms mean regarding the blood tests etc?
How should I follow up raised AMA levels?
another autoimmune disease?
