Good news:)

[Moomin900]

Thought I would share my news went to my see my consultant today for the first time and he was amazing! I do have the ANA and AMA antibodies but I don't have PBC yet He said I will probably develop it in the future but for now all is good. I dont have PSC either I have a fatty liver and he wants to do more bloods and possibly a liver biopsy but he told me not to worry and if I do develop it he thinks it will be a mild case! I now need to lose weight and get fit to reverse my fatty liver but no meds for now. He says once he's done a few more tests I will probably just need a blood test and check up once a year.

[Wendom]

Hi moomin 900

Can I ask why he said you don't have pbc yet do you have symptoms and why where you tested in the first place for the Ama just wondering positive Ama means pbc now not in the future I have normal liver function tests positive ama and Ive just been started on urso my consultant said Ama is pbc even with normal liver tests he said the liver functions don't change until the liver is struggling because its a very tough organ even though I have a normal liver function I get that awful upper right pain I get some itching and have been very tired for years I have been ama positive for 6 years but only found this out 20 months ago my doctors didn't tell me about tha positive Ama because they thought normal liver functions meant no pbc my consultant said there wrong and that I have pbc it's just what they call preclinical pbc you really need to get on urso to slow it down I have saw 4different doctors all say I have pbc hope this helps Wendy x ps I to have a small amount of fatty liver on my last scan in December and my Alt was slightly raised on last 2 bloods done in aughust and dec consultant things liver functions just starting to change now

[Moomin900]

The doctor I saw is an expert in PBC which is why I requested him it was a routine blood test. No symptoms or anything and my scan is completely normal. He says no point in going on Ursodeoxycholic until it develops as I don't need the extra bile yet. He is well k own to the PBC foundation and has written many papers on PBC so I trust him completely. He said I will develop it but I show no signs of it And my bloods don't either except for the antibodies.

[Wendom]

Hi there again my scan both ct with contrast and ultrasound are both normal but I do have symtoms I'm a bit older than you though I'm 47 is it professer james. Neuberger ( dont know if I have spelt it right my consultant said that he's the top doc for pbc my consultant has worked at transplant centre and is supposed billary expert whatever that means lol glad to see you have no symptoms that's a good sign Although there's a lady by me had a transplant a year November gone had no symptoms but was found on routine bloods ten years ago she's doing we'll but it worrys me that I only got symptoms two years ago and the pain i get is really bad pain also dry eyes dry mouth I'm hoping urso stops my pain it feels like my liver has enlarged I'm sure I can actually feel it the pain keeps me awake I don't know if this is normal in pbc I'm glad you've got a great consultant that helps a lot the first two I saw told me I had 15 years to live and the second 10 to 12 years the last one I see Now told me to ask for him on my appointments and he said there is no way to predict when anyone needs a transplant until your billirubin and albumin change he's very pleasant and doesn't rush you either which is great I asked him if I was classed as symptomatic he said yes even though liver functions only just starting to change and they haven't changed much just alt should be 32 but was 39 in August and 49 in nov or dec so something changing now I think hope you have many many many years of good health can I ask you why you where given Ama test what made them do this test if you Didn't have symptoms just curious stay well Wendy x

[Moomin900]

I thought I had a blood clot and went to see a Locum doctor who it seems ordered the wrong blood test so all this came up by chance. It's Dr Martin Prince that I saw. When I told Collette who I was seeing she said how good he was and he talks a lot at PBC events etc. he did his PHD in PBC. I don't have tiredness or fatigue and I don't have an itch. I have some digestive symptoms but that's the fatty liver, my weight and my diet. I'm going off what he tells me to be honest as he is the expert. I just wanted to share a positive experience if I'm honest as I know how frightened I've been and any sort of positiveness spurs some people on. He told me I would be around to see my 6 month old get married so I'm happy with that prognosis.

[mumofthree in reply to Moomin900]

You've had a very positive first appointment and deserve to be over the moon with the prognosis, so keep being positive. Enjoy your life and your baby.

Good luck for your remaining tests and best wishes for the future

[Moomin900]

I also wouldn't worry about the lady with the transplant as she may not have had symptoms but she must have been coming close to liver failure for them to do it and you don't sound even close to that at the moment. I'm just going to stay as positive as I can especially whilst I have no symptoms as I know I will have it eventually. I suppose I would be classed as pre clinical too which means that the antibodies have not started to done damage yet which is surely a good thing I'm going to see him again in February on the NHS and will have the other tests then so will ask him in more detail why no Urso and let you know.

[Moomin900]

*to do damage

[SC49]

Moomin: that is brilliant news.

You must be relieved, both with getting such positive news AND with getting a top notch consultant!

Don't worry about getting symptoms - some of the stuff that I have read suggests that some people are not too troubled by symptoms. i think PBC is so individual that it just does its own thing in each individual. If they are monitoring you regularly from now, they will hopefully be able to minimise the damage and keep it under control.

I am so pleased for you x

[Wendom]

Hi moomin again I'm glad you're so positive when I was first told I lived like a zombie for the first year or so I never want to feel like that again I don't now thankfully I have a granddaughter who is 4 now and all I could think of is i wouldn't see her grow up my three sons had grown up and left home so I spent my days alone and would cry a lot when my partner came home from work I would put on a brave face but inside I was hurting its funny how you learn to cope Colette from the pbc foundation was great she told me that I would learn to live with it and not worry so much and while I still have my off days I pretty much try to enjoy my family and my little grandaughter I'm also waiting for a new grandchildren one was due on Sunday but is keeping us all waiting lol and my son who has my little grandaughter is expecting again in June so I have lots to look forward to I read up about dr prince he does seem like a great doctor to have I'm glad your putting out this positive message so many of us are so scared upon diagnosis . With regards to the urso I think I am classed as preclinical too but I think because I have so many symtoms and because my Alt was rising that's why they started me on it in December although I didn't want side affects over Christmas so I waited for the new year to start them only been on them a week have more heartburn than usual but pain in side seems a bit better don't know if its coincidence or not suppose I will just have to see ,fingers crossed let me know how you get on in February

Oh and the lady who has the transplant by where I live was diagnosed ten years before having it but I know she could have had it for decades and just didn't know so the fact that you and I have been found earlier is probably a good thing so we can be monitored and I have read that urso is more effective if given earlier on in the illness good luck and best wishes for the new year ahead Wendy x

[Moomin900]

I think as soon as anything changes he will put me on the Urso so will have to just wait and see and hope things stay the same for a very long time to come Good Luck Wendy I am sure you will be fine - lots of things to look forward to by the sounds of it x

[wendyh]

i was told that positive AMA in the blood was enough for a PBC diagnosis

[Moomin900]

From what he said (but will ask in more detail) it depends on your entire medical history. I have the antibodies but that's it, no symptoms and my bloods, liver ultrasound and general health is great. I suppose I would be what you call pre clinical in that the antibodies are not doing any damage at present. I do have more questions when I go back.to be honest I was just so elated that he told me I would see my children grow up!

[Axl888]

Great news and agree the best way to deal with it is to have a positive mental attitude. Enjoy your life and dont waste it by worrying about something that is not there. I am sure your consultant will monitor you and that's all you need to pick up any changes in the future. I was diagnosed by accident at age 45, was told I had probably had it for over 20 years by then, I still wouldn't know about it now if it hadn't been picked up by accident. Best Wishes

[Kevin733]

Why are we so sure that AMA alone means current (or future) PBC? It's well-documented that approximately 0.7% of the population (constant for men and women) are AMA positive. But the prevalence of PBC, using the very highest estimates, is approximately 1/10th of that for women, and 1/100th of that for men. Isn't it at least theoretically possible that some of you are in that majority?

In the US at least, the diagnostic standard for PBC is not AMA alone. It's 2 of 3 out of elevated ALP, AMA, and a positive or consistent biopsy finding. I know that AMA positivity is 98% specific for PBC, but this statistic doesn't exist in a vacuum. Because AMA isn't tested for in routine physicals, there is sampling bias among those shown to have AMA. I urge you to consider these numbers before drawing any conclusions.

[Kevin733]

As a follow-up, please refer to this peer-reviewed paper: "It is estimated that 0.5% of the general population is AMA-positive, which means that fewer than 10% of patients with AMA will develop PBC."

aasld.org/practiceguideline...

This paper also clearly states the "2 of 3" criteria mentioned above.

[Nboo]

Moomin900, Any current updates? I see this post is around 5 yeas old.