PBC with negative AMA, ANA and SMA? - PBC Foundation

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PBC with negative AMA, ANA and SMA?

Blossompossum profile image
12 Replies

Can it be possible to still have PBC with negative AMA ANA and SMA?

I have been tested for all of these still with elevated lfts and they are negative..

My GP is getting pretty clueless as to what is going on. My specialist has now ordered me to get a liver biopsy which I am a bit squeamish about

Any help would be appreciated =)

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Blossompossum
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12 Replies
Kaywal profile image
Kaywal

Hi Blossompossum. A Positive AMA test is the reliable indicator of PBC. I'm AMA negative and also had to have a liver biopsy which confirmed the diagnosis. The test was nothing to worry about and was certainly much better than not knowing what was wrong with me. I was waiting for two years to get the biopsy and the diagnosis as they'd only do it after all other avenues had been explored. I wish I'd have had it done first! All the best x

Blossompossum profile image
Blossompossum in reply to Kaywal

Thanks for getting back to me. Do you know if you had tests for the ana and sma? What were your initial symptoms?

Kaywal profile image
Kaywal in reply to Blossompossum

Hi. Yes positive ANA but have had autoimmune disorders for 25 years. I don't know about SMA, sorry. My initial symptoms were extensive pain, extreme fatigue, weakness and being unwell all the time. The Docs initially suggested I had a form of hepititis and I had to wait six months before they would even do any further tests. Then I had ultrasound, MRI and ERCP (all clear). I had to wait around 3 months for each subsequent test and finally had the biposy over two years after my initial visit to GP. x

Yes it can be possible to have PBC with a negative for AMA. (ANA is normally positive if one has AIH (auto-immune hepatitis). Know I had both AMA (positive result) and ANA (negative) but not sure about the other one you mention SMA so can't say if that was included in mine or not. (Don't think was as I got a print-out of letter from hospital consultant to my GP and it just stated the ANA and AMA only.)

Apparently if you are testing negative for the AMA in particular, then normally the next step is a biopsy if you are experiencing elevated/abnormal LFTs. That would have been suggested to me had it not thought I had PBC due to fatigue and itching and the AMA hadn't shown positive.

Blossompossum profile image
Blossompossum

Thanks peridot. You have been most helpful with your replies. I just want to rule out pbc once and for all but google is doing my head in.

I hope I can get a liver biopsy ASAP to get to re bottom of it.

Ellanvannin profile image
Ellanvannin

ANA usually points to sjogrens syndrome. Has this been mentioned to you.

Elevated ACE points to sarcoidosis. All these illnesses are so similar that it is no wonder that the Drs. have a job to work out a diagnosis.

Sjogrens usually gives you dry eyes and mouth along with all the other aches and pains and poor circulation.

Magnolia profile image
Magnolia

At the time of my diagnosis, 10yrs ago, I was AMA and ANA negative, but still the biopsy confirmed PBC stage 2.I've never saw a test for SMA for me. I have had the ESR elevated twice. The pain clinic dr. thought I had RA because of this elevation in the beginning, but I don't.

In the beginning my AST and ALT were elevated but are not at the present. My ALK phosphatase has been elevated for more than 20 yrs.

Magnolia

in reply to Magnolia

I'd not heard of a test for SMA but on looking it up, stands for Smooth Muscle Antibodies.

I've got a bit confused what it is for but it is to check for one of the auto-immune conditions.

Blossompossum profile image
Blossompossum in reply to

Sma I guess I similar to the ana test. For the 10% of people that have pbc but are ama negative then the ana and sma test are posotive for around 50% of people with pbc that test negative for ama.

Here is a journal written article I was looking at today, interesting. CONCLUSION: AMA-negative PBC patients are characterized by relatively lower levels of serum IgM and a higher prevalence of serum ANA/SMA and are not associated with substantial differences in the clinical biochemical and histological spectrum of the disease

fudge13 profile image
fudge13

Hi there I am AMA negative with raised alk phos,GGT and Igm .I had a liver biopsy which showed changes in my bile ducts a few years ago.My consultant diagnosed me with pbc about 4 years ago because of my history and other results even though I am AMA negative and I was started on urso medication 2 years ago..I went to see my Consultant last week and he's testing my AMA again because he said you can change from negative to positive in time.It might be worth asking to have it checked again in a year or so.The biopsy wasn't too bad,just felt a bit bruised for a few days after.

Goog luck

Blossompossum profile image
Blossompossum

Thankyou fudge.

My specialist said my bloods just don't 'smell' like pbc. I think this is due to the fact that my lgm is right in the middle or

Normal limits.

From what I have read everyone has elevated lgm with pbc even in its early stages.

Hope you are all keeping well

witchiegirl profile image
witchiegirl

ANA can be positive in several AI conditions, lupus for one, I think. None of them are that accurate. They just help as pointers/markers. Drs have to rule things in and rule things out, partly why it can take so bloody long to get a dx label and the right treatment. And then there are all the variants, like people who have features of more than one disease, but a missing marker. Me for example!! (I have ANA but no AMA, think I am SMA pos,, fairly unchanged over a decade or so, and features of PBC and AIH on biopsy). It's all quite complicated.

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