PBC Foundation
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I was diagnosed with PBC in Dec, because of elevated ALP & AMA. Had a biopsy last week. It came back as, "inconclusive."

I was diagnosed with PBC in Dec.2012, because of elevated ALP & AMA. Had biopsy last week. It came back as, "inconclusive." Has now been sent to a major medical center for further study by a team of expert radiologists. Does this mean that i have it, but the area the biopsy was taken from is not affected or can it mean it's in early stage, so its difficult to confirm? Confused....have had elevated ALP for 8 yrs. & did not have the AMA tested until 2 months ago.

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In 1997 after my first biopsy the GI Dr. that did it didn't know what disease it was. His impression was it could be the early stages of one of 3 diseases and PBC was one of them. It took another biopsy done in 2003 and sent to the Mayo Clinic to be confirmed as PBC stage 2 and had been PBC stage 1 in 2003.

Mine was AMA negative then, and I don't know if it is still ama negative or not. This is only in a small percent of the people that have it. That Dr. just told me that it, in itself would not probably make me sick, and didn't even have me to follow back up with him, he just sent the results to my PC. Did you write some where they got more than one sample from you? This is probably good news, that if it is PBC it is very early stage.Where did they send it to Wendy?

Magnolia

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They have sent the biopsy to Duke Medical Center, in Durham, NC. It will take 1-2 weeks before I know results, by a phone call. They scheduled me with a Dr. appt. Mar.26! I am very upset about this as well. If it is PBC confirmed, I will need to start the Urso, plus, I have many questions to ask him. Not sure what I should do about this.The radiologist told me before the test that they would be taking 2-3 samples.

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I thought you wrote somewhere they were getting more than one sample. I'm sorry you have to wait 2 weeks to learn something. The March appointment is a long wait. Just start writing down your questions, and when you present them to the Dr. start with the most important one you want to know.

It went the same for me, even after the biopsy, I went for my scheduled appointment and they sent me back home saying they needed some more information from the Mayo clinic before the dr. wanted to see me. At that point, I didn't even know it has been sent to the Mayo clinic, which set off a great deal of anxiety for me. I thought, Oh my gosh this is going to be bad! I don't know how long I waited from that point, I can't remember.

Then I went on my own to get the diagnois from this GI dr. From the way he presented it to me, I thought...I may start to get sick and have problems before I know it. But I DID NOT! I started the urso....600mg in the beginning, and now I take 1000 a day and would take 1500 if my stomach would allow it. I really believe it slows the progression down.

Even now my itching sometimes could only be the urso not the disease, for others say it causes itching for them, but I will of course continue to take it. I wish I could take the worry away for you. I wish I could erase the ...needless... worry I had about the disease, and then to have went all of these years and not have symptoms until the itch about a year or so. I will continue to pray for you.

Magnolia

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I greatly appreciate your prayers, Magnolia. The radiologist did tell me, before the biopsy, there would be 3-4 samples taken. I think, if anyone can analyze & diagose this biopsy, it will be the team at Duke Medical. Thank you for your encouragement. :)

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It sounds like you are in the States by your mention of Mayo Clinic.

Here in England as you've probably read prior on this site, if one has symptons (ie fatigue and itching are the 2 commonest) and elevated LFTs and GGT (and probably others as the full blood count is done also - I have one that is slightly abnormal) and the antibodies (AMA) test is performed on the blood and it is positive (mine was) then there would be no need for the biopsy to confirm PBC.

Apparently it is usually offered if there is some doubt.

But I still think that it is the area where the biopsy is taken that is of significance. Not sure if PBC would show throughout the liver but don't seem to think so.

On the other hand if you've not been given urso so far then that surely means that your LFTs aren't what is considered abnormally high to perhaps be started on it?

I had an 8mths wait from presenting at the doctors with itching in 2010. I then was expected to have another weeks' wait when the results were sent to my GP early Dec 2010 and his receptionist rang to inform me the GP wanted me to go in so he could prescribe a med and she then gave me an appt a wk later. When I asked what meds, could she say and when she did I knew it was going to be PBC diagnose and didn't want to wait another wk now kowing. My husband took over and insisted we have a sooner appt which we did then get. But it has to be remembered that PBC is apparently a slow progressive condition and with urso there is still no guarantees. If after taking mine just over 2yrs now I'd not finally seen a sign that the itching has lessened in intensity at night-time then I doubt I would still be taking it as I still do have reservations about it.

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Thanks for responding to my question, Peridot. I just hate the wait game. When I start to get upset, I think about the fact, that I was worry free, until I found out about this elevated AMA & ALP. So, until the diagnosis, I will try to continue with life, as I did before....happy-go-lucky. But in the back of my mind it's there. I will take the Urso, even if it only helps a little, as that is better than nothing. I took interferon Beta 1-A, for 12 yrs, to slow progression of my MS, by only 33%. Years of clinical trials have proven it is just enough to keep most MS patients out of wheelchairs, etc. so I took it & have done well so far. I feel I would be worse by now, if I had not.

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Hi Wendy-Marie thats very frustrating for you but as long as your feeling ok try not to worry stress does not help any condition and if memory serves me right you also have M.S. so enough on your plate. Just remember even if you do have PBC it is a SLOW progressive disease so a few more weeks without treatment will be unlikely to do you any harm but I completely understand how you feel just not knowing what you may or may not be facing. Most of us on here have had the experience of having to wait on diagnosis. I myself suffered horrendous itch, fatigue and joint pains for a year before getting diagnosed. I ended up going private just to get an answer in order to get proper treatment for the symptoms, mainly the itch which was driving me insane! Thankfully I am doing grand at the minute. You will be fine once you get your diagnosis, hang in there and just concentrate on eating healthy and keeping fit in order to stay as well as you can. Bfn take care.

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Thanks for your reply, Littlemo. I keep telling myself, "It is, what it is," meaning, there is not much else I can do, other can take the Urso. I guess, that is why I am anxious to find out & hurry to get on meds, since I have had elevated ALP since 2005, at least...maybe longer. I only have copies of bloodwork, since '05. I just feel, that this has gone on too long already, without medication.

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Hi again just to add to that and maybe lessen yourworry my consultant hepatologist is always telling me that the lfts most important to watch to assess disease progression in PBC are the bilirubin and the albumen so if these are normal in your blood results try not to worry. Re ALP mine is currently over 600 and I feel grand and hepatologist not unduly concerned and I am not on Urso anymore. Bfn take care:-)

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Thanks, it does help lessen my worries. My Alk Phos are 200, AMA=44 (.Normal range for AMA he said is supposed to be 0-20.) Everything else is normal.

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Thanks for that info re the AMA range my consultant never discusses that with me. He only speaks about the bilirubin and the albumen and just asks how I feel in general. Take care good luck at your next apt.

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