PCB AMA positive

[nellysarmiento]

lives in UK, in short words, please tell me what this really means??

[Hidden]

Hello nellysarmiento.

PBC AMA positive means that you have PBC.

I have PBC and tested with a positive titre (as it is measured in) AMA which are anti-mitochondria antibodies. (Mitochondria cells are knows as energy cells.) In PBC what apparently happens is the bile ducts are being destroyed by these antibodies that we have in our system.

When I first presented in early 2010 at my GPs (I also live in the UK) I had itching and felt fatigued (tho' at the time I was working a 48+hr week and had for several mths prior). My liver function tests (LFTs) came back abnormal so I had repeats of those and also various other bloods tests before being given an unltrasound on the liver area. I saw a hosital consultant Oct 2010 and he said he would do the AMA as well as the ANA (anti nucleur antibodies). 2mths later I was informed at my GPs the hospital consultant had wrote to him and had results, I had AMAs but tested negative for ANAs. I was given urso to which of course I am still on.

My bloods did start to improve over the first 5mths I was taking urso and then started on slight incline again in the wrong direction but the last ones I had in May this yr they showed my results to be as good and also 2 better than the initial ones after starting on urso.

I still itch, not as bad as I used to do but if I am going to do I will then at night-time which is a nuisance as it disrupts sleep. I no longer feel really fatigued but get the occasional day when I feel I am flagging somewhat but on the whole I am doing ok and now been 2 and half yrs since the itch orig appeared.

You didn't state if you were given urso as another poster on this site recently mentioned altho' they tested positive for AMA and had been informed they had PBC they currently had normal LFTs and hadn't been started on urso.

Please fill us all in more. Regards.

[nellysarmiento in reply to Hidden]

Thank you so much for this info...

I had only been told about this 2 weeks ago.... after so much clinical information I feel devastated with this news. I have not seen anybody as yet, NHS referral, might be familiar, therefore I have not got any medical input more that just I was positive for AMA. I have been itchy for quite a few years, my mother was like that and just put it that I was like her....fatigue, I supposed I have, again I put it this was just my age and menopause I am only 47.

What do you advice I should do, it is very scary this site is very good, but still I do not know what to do, I am only praying that this might go away, I also was working long hours, do you think this cause the problem??

lind regards

[wendyh in reply to nellysarmiento]

can i suggest that you contact the PBC Foundation in Edinburgh.

they will send you all the information that is known about PBC and are available to talk to on the phone as well if you feel the need. contact info via the following link.

pbcfoundation.org.uk/

[Hidden in reply to nellysarmiento]

Hello nellysarmiento.

You sound a bit similiar to me with regards to how you started having the common symptons of PBC, first fatigue (that you ignored, well I did) and then itching started. I was 46 when the itching started. (It is only in the last 6mths I've started with the menopause but I've not seen a doctor as don't need to to have it confirmed nor do I intend to take HRT if at all possible.)

Unfortunately like me and everyone else out there with PBC we are stuck with it for the rest of our lives as currently there is no cure. But it is noted that for the majority of us we will eventually die of something else and not the PBC so it is hopeful.

I think at the moment you are reeling with the information you currently have as I also found back in 2010 that I needed time to digest it all. I was fortunate that when I started with the itch and then the different blood tests, I did some snooping myself, internet and library ref books and stumbled across PBC at the time. I did hope I didn't have it, never mentioned it to a doctor until when I saw the hospital consultant for the first time Oct 2010 (took 6mths from me initially seeing the GP with itching, but we all know the NHS moves slow in certain cases!), he rambled about antibodies test and I said myself then would that be testing for PBC and he said one of them (as there is also PSC and other things).

I was not happy when I got the called Dec 2010 from the GP surgery by a receptionist saying I needed to see the GP as he needed to give me medication. I asked if she could tell me what medication as she couldn't say further what the GP was going to tell me and when she said ursodeoxycholic acid (that I spelt out for her!) I knew then that I was going to be told I had PBC. Of course then for me she was going to give me an appt a wk later and tho' it wouldn't have been overly-drastic in starting them a bit later, at the time and knowing this, I wanted to be informed rather than wait a wk and wonder. My husband was here at the time and he took over the phone insisting that I was seen before the end of the day's surgery to which I was 'fitted in'!

I have no idea how I came to have PBC, it seems that there is no definite answer at present. All we can do is learn to live with it.

I'm sure once you get a definite diagnose and you have been informed you have PBC and I expect due to having the itch you will be given urso, with a bit of time you will start to feel a lot more normal once again as majority of us do with urso. I have felt fantastic now for almost a yr and last 6mths I have been much much better but I did have a lifestyle change just before diagnosis.

Keep us posted.

[melisab]

Hello nellysarmiento, I would definitely start on urso asap. It really does help to slow the progression of PBC. I am positive for AMA but all my liver enzymes have been good. I just got my liver biopsy back and am at stage 0. I am continuing to stay on urso because it does help. PBC is not a death sentence. I know of several women who have had it for a very long time (20 yrs) and are fine!! Good luck!

[wongie]

Hi nellysarmiento, I feel for you at the moment, because it is a real shock when you first are told you have PBC. All I can say is to get as much information as you can off the doctor next time you see him/her, but be careful not to read to much stuff on the internet as you can get a bit overwhelmed with it all. As you can tell by the reply's you are getting, this is probably one of the best places to visit and get advise or just let people know how you are feeling. Take care.