More confuse than ever!

[odchacon]

I tested positive for AMA M2. My Alkaline phosphatase is mild elevated. I have fatigues. I have terrible right upper quadrant and lower back pain. However my liver biopsy came back negative. Do I have PBC?

[Zelda5]

Hi Odchacon,

There are a lot of us in that same boat. I'm AMA-M2 positive with fluctuating enzymes and my biopsy earlier this year was negative for PBC, but it showed a mild fatty liver and the ultrasound showed moderate enlargement of the right lobe. I got ahold of my biopsy report and it stated that although there was no evidence of PBC they couldn't rule out early stage PBC because it can be focal and patchy, which goes along with what I've read. Sometimes, biopsys are not that reliable and it sounds like in the UK they aren't done as often as they are in the US, because they feel they're aren't worth the risk. For now they're monitoring my liver enzymes, so I guess if they go up anymore then I may be looking at another biopsy. Seems like I remember you stating that your liver was mildly enlarged, so did they mention if your liver was fatty? Hopefully, they'll still want to continue to monitor your enzymes in case they should rise in the future. There is a member here (GrittyReads) that has had +AMA with normal enzymes for at least twenty some years with no PBC, so it's hard to say. In one article I found it stated that an Israeli Dr. (I believe) stated in some cases it could take up to 40 yrs. Out of curiosity, do you have any other autoimmune diseases?

[odchacon in reply to Zelda5]

Hello,

I do have a mildly enlarged liver since 2013. My liver doctor told me I'm negative for PBC. I still have to see her and the GI doctor too. I don't know if I have any other autoimmune diseases because doctors can not find it.

All my blood works are little low or little high. AMA M2 very positive as well as my pain.

I asked doctors to test me for weird diseases because my daughter tested positive for Morphia, Scleroderma.

[Rockie in reply to Zelda5]

After the biopsy I was sent for an ERCP and then they said it was PBC. Yes the biopsy is apparently not l00% accurate, especially if liver is a bit enlarged, like mine. I have'nt gone for tests for long time, as I know there is no cure for PBC, they just try and keep you comfortable. unless you consider liver transplant

[GrittyReads in reply to Rockie]

Are you on Urso? If you test +ve for AMAs it is usual to have your liver function tests done every year, as PBC can develop and/or worsen at any time. If it develops then Urso can help hugely - it has made a big difference to the lives of so many sufferers, and hardly anyone now dies of PBC compared to the statistics years ago.

I've had AMAs for over 23 years, but have stayed clear of PBC, and my liver tests are always perfect, plus I have no symptoms and am otherwise healthy. Some people just have the antibodies, it does not automatically mean you have, or will get, PBC. However, I really would advise you to have bloods checked regularly, as treatment can now do a lot if PBC is there.

[Rockie in reply to GrittyReads]

PBC and outo immune were confirmed through tests. I do take Ursotan, the only medication in South Africa that can be used for the thinning of the bile in the bile ducts. I do go for blood tests, used to go every month, but I know I have to take the medication and there is no cure, except liver transplant. I have it since 2009, or maybe for longer, but that is when all the tests, biopsy. ERCP, you name it, were done

[GrittyReads in reply to Rockie]

Apologies. I misunderstood. I thought you were the original question poster - teach me to check names more carefully !!

Take care.

[Rockie in reply to GrittyReads]

No problem. I am very limited what I can do with my notebook

[odchacon in reply to GrittyReads]

Does Urso helps relieve the pain?

[GrittyReads in reply to odchacon]

I don't take Urso, as I don't have PBC, so I'm afraid I can't really advise about Urso and pain.

I only have AMAs (have had for 23 years), but I still have perfect liver function tests, no symptoms of PBC and all else good and healthy, so I'm not classed as PBC. I hope others can advise you about Urso and pain.

My understanding is that pain in the liver is not usually typical of PBC, but I could be wrong. I think it's more associated with fatty liver, gallstones or other conditions.

However, for anyone with PBC, Urso slows down the damage to the liver, which is why people often get liver function tests back to normal (or nearly normal) and are able to go and live long, full and healthy lives, compared to how it was for PBC sufferers before Urso was invented.

Strictly, AMAs alone are not enough for a diagnosis of PBC. They will monitor your lfts over time, in case PBC develops. It could be you are at a very early stage - hence the clear biopsy - but with AMAs present. Lots of people have AMAs but never develop PBC.

However, you could do with finding out what is causing the pain, as it could be other things. Hope you get it sorted. I would phone or email the PBC Foundation, who host this site on 'Health Unlocked' - there is a link to their site at the top of the page. You could then phone/email one of their trained advisors. Their site has loads of info on PBC, and it's up-t-date, unlike most overly scary outdated stuff that is generally online. There is also the British Live Trust site here on 'HU', they can advise on liver issues generally.

Take care.

[amt50 in reply to GrittyReads]

wow stumbled on your post, so you have positive AMA but not PBC? I thought positive AMA meant PBC that is what I was told by GI Dr, so does it mean that I might not have PBC then....

The letter actually says....

.......Only recently was this referred to the hospital for a full liver screen which identifies positive antimtochondrial antibodies with a titre of 1:640 which clinches (Dr's words in the letter) her diagnosis ie PBC

Looking forward to your reply?

[odchacon in reply to amt50]

Hello,

According to the doctors I'm a positive negative. I don't have PBC because all others test are not enough to support the diagnostic. Definitely something is up with my immune system. The doctor suggested to see a Rheumatology for another opinion. Meanwhile, I'm still with the pain.

Any other suggestion I would really appreciated

[odchacon in reply to Rockie]

How is the ERCP test done?

[Rockie in reply to odchacon]

It is done at X Rays but they give you a sedation, anaesthesia

[odchacon in reply to Zelda5]

do you think it would be a good idea to go to a pain management doctor?

[Rockie]

Hi can only say after my 1st consultation with a Gastro Spesialist he suggested I go and see a gynea. Well after the biopsy and ERCP the PBC was confirmed.

[Zelda5 in reply to Rockie]

Hi Rockie,

Was your biopsy originally neg and you were diagnosed based on the ERCP.? Sorry, just trying to understand. Thanks!

[Rockie in reply to Zelda5]

The biopsy outcome suggested the ERCP because it could either be Primary sclerosing cholangitis,Primary bilary cirrhosis or Large duct obstruction.Findings after ERCP were PBC that was 15th Dec 2009. I first got the thyroid (outo immune) then my immune system attacked the liver. Goodness knows what else it has attacked since 2009. I googled this so many times. There is no cure Sleep well!.

[odchacon in reply to Rockie]

The liver doctors told me they got 4 small pieces in the biopsy. It sounds to me like it wasn't enough to confirm

[dianekjs]

I've had a low positive AMA for several years. No PBC symptoms, negative biopsy, enzymes good. Keeping fingers crossed, but I guess it could develop over time.

[odchacon in reply to dianekjs]

do you have any pains?

[Rockie in reply to odchacon]

Yes I used to get pain in my right side from time to time, but fou nd nowadays it is more regular, so the liver is taking strain,I think, wish i could get clarity on all this, but hate going to drs, especially with PBC, because they dont specialize in that field

[dianekjs in reply to odchacon]

Mild joint pain, some neuropathy, but no liver pain to speak of. I do have other autoimmune health issues, but am told they are not related to the positive AMA.

[odchacon in reply to dianekjs]

My AMA is at 60. Is that low?

[odchacon]

Do you guys think it would be a good idea to go to a pain management doctor?

[Rockie]

No harm in trying, but if one has pain, your body warns you. So it would be better to find the cause for the pain

[PBCFoundation PBC Foundation]

Hello odchacon,

I am about to send you a message.

Best Wishes

PBC Foundation