Amazing news

[Chazzy]

Just been for my consultant appointment and he said he doesn't think I have PBC and if I do it's so early that I wouldn't have any meds to take. Really can't believe it. Had some more blood tests and go back again in 4 months but truly cannot believe it.

[Carol60]

WOW! That is wonderful news, Chazzy! So happy for you. I'm in the early phase of what is called Stage 1 PBC, but my gastroenterologist insists I start Urso since all recent studies have shown that starting it at the beginning of the disease process keeps progression down, or in some stops the progression altogether. I'm curious what others who have had long-term PBC might think of not taking the Urso? Still happy that it may not be PBC at all. Are you AMA/M2 serum negative?

[butterflyEi]

good news Chazzy. hope this remains the case for you

best wishes

[GrittyReads]

Do you have all your blood test results? If not, get a copy of all the tests done since PBC was suspected, and check them. Compare them to the information given on the PBC Foundation website (they host this site on 'Health Unlocked' and there is a link to their website at the top of this page).

If you have AMAs (esp M2 sub-type) AND your liver function tests results are abnormal - all this explained on the PBC Foundation website - then that is usually enough for a diagnosis of PBC ... but especially if you have the main symptoms of PBC = fatigue, itching and maybe joint aches. The Urso medication is currently the only help for PBC, and most consultants do not delay prescribing it.

If blood results are normal, but you only have AMAs and no symptoms, it may be you are just one of those people (like myself) who just have the AMA autoimmune factor, but does not have PBC - though it can develop and you should have annual blood tests to keep an eye on things.

However, it is the blood tests that are the decider, so I would get copies of the tests (in the UK it is your 'right' - though there may be a charge if it's a while since some were done). If ALP, AST, GGT especially, are high (again check the PBC F website for the info) then you should either be on Urso, or receiving more investigation. Sadly, with some consultants (especially if they are gastros and not liver or PBC specialists) there can be confusion over diagnosis of PBC, as it is a rare condition, and a lot of people don't know as much as they should. Sadly, it means you need to become the expert on your own health and conditions.

Take care.

[Chazzy in reply to GrittyReads]

Thank you. Consultant was a liver specialist and had 150+ patients with PBC. Had some more blood tests done so awaiting the results. I thought the AMA which I do have was a decider but he says not!

[Carol60 in reply to Chazzy]

So surprised at how many PBC patients one doctor has in the U.K. Is PBC more common in the UK? Or perhaps it is more common in Anglo-Saxon and Celt DNA populations? I show about 48% British Isles/12% Irish on my autosomal DNA which may explain how I ended-up with PBC?

I live near Washington, DC and see a hepatologist at Georgetown University. His PA thought that perhaps they were seeing about 50 patients with confirmed PBC, and a few more with positive AMA/M2 titres but no sign of disease.

Somehow, it seems less "rare" to me seeing how many people there are just on the PBC websites.

[GrittyReads in reply to Chazzy]

That's good then, glad to know you are in safe hands. I thought it worth checking, though, as others on here have been told - even by consultants - that AMAs = PBC, so good to hear that he 'knows his onions'. I hope you get to the bottom of what's going on, asap.

Meanwhile, treat and coddle yourself - don't dwell and stress = the worst possible state for our health, especially with autoimmune-ish conditions.

Take care.

[Chazzy in reply to GrittyReads]

Thank you. Just feel quite confused about it all.

[Littletonya in reply to Chazzy]

I do hope the doctors is right you don't have PBC. That is really good news. I am still waiting to talk to my dr about my biopsy, the nurse read me a little of the results, said there was some bile duck damage and could be early stages of PBC but I won't know for sure until I talk to him on Thursday.

[Chazzy in reply to Littletonya]

How did your appointment go?

[Littletonya in reply to Chazzy]

It's next Thursday, I should have said the 21st.

[Kevin733 in reply to Chazzy]

" Only about 10% of patients who are AMA seropositive, but lack clinical features of PBC, subsequently develop PBC." ncbi.nlm.nih.gov/pmc/articl...

[Chazzy in reply to Kevin733]

What does that mean??

[GrittyReads in reply to Chazzy]

Basically, it means that: only 10% of people who do have AMAs (M2), but do not have the other clinical criteria for PBC: [mainly the raised and rising liver function (blood) tests] will go onto develop PBC.

So: 8% of people with AMAs - but who do not have other clinical signs of PBC - will not get PBC.

Basically 'just' having AMAs does not mean that you have, or will get PBC. I have had AMAs (M2) for about 24 years (maybe I've always had them) , and I still have 'perfect' lfts and no other signs or symptoms of PBC. Also, my entire medical history does not involve other conditions typical of PBC, and my family medical history does not suggest any indications typical of PBC - good consultants will be taking all such things into account.

Some consultants label anyone with AMAs as having PBC, when that is not necessarily the case. It needs far more checking to confirm PBC - ultimately a biopsy is the decider: but, raised liver function tests (especially: GGT,ALP, AST,ALT) over a period of time, and symptoms, as well as AMAs are necessary for a full diagnosis.

Click on the link that Kevin has given you to read the article.

Take care.

[mollymom]

Great news!!!! Stay well all the best