Diagnosis and scheduling biopsy

[NotorDJP]

Hello all! As some of you know I have been waiting on a diagnosis. My specialist today said that I have PBC, but he wants to know how active it is and stage it, so I"m having a biopsy. He also is going to send me to a rheumotologist to see if I have any overlapping disease. I have lots to schedule and do. Just wanted to let everyone know.

[Hidden]

Hello NotorDJP.

Are you in America? I am in the UK and when I was informed I had PBC there was no mention of biopsy. It seems the norm here in the UK if you have symptons (ie fatigue and itching are the main 2), abnormal LFTs and GGT then the AMA (antibodies blood test) can confirm PBC. Mine did. A biopsy is usually done if the AMA is questionable and also for other reasons.

I don't go in for staging and don't want to know. If one has PBC the biopsy can only confirm it really and doesn't offer much else really from a patient's point of view as it won't change anything.

Now you have a diagnose you can start getting your life together but at the same time like everyone we all wish we didn't have this PBC as to me it can be so bizarre. I find itching doesn't add up as in the frequency of it, been pretty much ok last 2 days and can't think what I've actually consumed was that different or what I might have done, was I more active or less active for eg.

Out of interest what is your rheumotologist perhaps going to find or rule out.

[NotorDJP]

Hello peridot, yes I am in the US. Here they won't do a definitive diagnosis and start treatment until you have a biopsy. The main reason, I think, is that I have such a high ANA along with AMA that they want to be positive where I am in the disease to start treatment. I actually want to know what stage I'm in and would like to know for sure this is what I have. I am not looking forward to the biopsy or the cost, but I guess I want to know. They want me to go to the rheumy because I have some other blood tests they can't explain. For instance my asma test is negative and it is usually positive in people with PBC, as is the IGM, which is non reactive in my case. They are suspecting possible overlap for me, maybe Lupus or something else. I hope it isn't lupus, because having lupus and PBC would just be a kick in the head in my estimation. As far as getting on with my life, I currently only have fatigue as a symptom. I don't have the itching (I have some itching but I think its just normal dry skin winter itch). I have some other symptoms that may be related to overlap or PBC. I get the cold hands and feet and just trouble with cold overall, I have a face rash (similar to lupus rash, but always just thought it was roseacea, not sure now) and some hair loss. That's about it. I knew I had PBC, pretty much for some time, but hearing it from the doctor and wondering are two different things. I am doing pretty well right now with my emotions and attitude, but I'm not overly happy this morning either. I am now concerned about what stage I will be in and if I will do ok with the medicines. I have a tendency to react to meds and I may have to go on meds for an overlap disease and for PBC. I really appreciate this board as it seems to be the only place I can really talk these things out. I will say i was happy so for though with my specialist.

[Hidden in reply to NotorDJP]

Hello NotorGP.

Hope you get your results and that yo know exactly where you stand with regards to stating you also have a positive ANA as well as AMA. (I was negative with the ANAs, positive for AMA. Have had other antibodies blood checks but don't know what they were but they were apparently negative too.)

The itch in PBC is of no guide whatsover aas some people itch, some never do and some develop it over time. I started with the itch and it went from there.

Unlike yourself I have a tendency to feel the heat, always have. I find that if I get too hot I feel prickles of the itch looming.

You sound like you aren't that far with PBC as you've not noted anything drastic about your symptons. It's also got to be noted that these so-called stages of PBC can last a long time too and some never progress beyond a certain point.

I do hope you re-post at a later date with your results. Good Luck and I hope you receive a better result than you might be thinking about even though it would be better not to have PBC at all.

[operatic]

All the best to you. Hope you don't have any other overlapping disease and also that PBC is only at stage 1 early stage. Stay well as long as possible!

[NotorDJP]

Also, can you be in later stages and still be pretty asymptomatic? I have found a guy on one of the US boards that was diagnosed at stage 4 and says he is mostly asymptomatic. I don't know his enzyme levels or anything since I am new to that board, but I found that astounding.

[Karaliz in reply to NotorDJP]

Hi Notor. I was diagnosed with PBC over 10 years ago when I was 38. Biopsy at the time revealed Stage 1-2. More recent biopsy showed Stage 3 fibrosis with significant damage. My LFTS are highly deranged, Albumin and platelets dropping, am on the OCA trial as no longer respond to Urso. To answer your question although I have significant fatigue and some aches and pains, my symptoms are few. I still work as a nurse and look after my big family: 4 children ,with help from my wonderful husband. Good luck with the biopsy, it is considered a valuable tool and the gold standard here in Australia for diagnosis and planning for the future. I wish you all the best as you begin your journey Notor.

Karaliz.

[NotorDJP in reply to Karaliz]

Thanks for your reply. I guess I am concerned that I will be diagnosed at stage 4, since symptoms don't seem to reflect stage in this disease. I think I have had elevated enzyme levels for over 3 years. Of course my other tests are normal. Platelets are normal, albumin and bilirubin are normal, so probably not at that stage yet. Have they said that they want to put you a transplant list? I dont' know when that happens . I know some people never get to that point and even folks in stage 4 can go for a long time without needing a transplant. Thanks for your good wishes.

[Hidden in reply to NotorDJP]

Noticed you didn't state you were on urso and I suspect you aren't yet so if this is the case then you should see greatly improved LFTs if you are prescribed this.

[NotorDJP in reply to Hidden]

They wont give me meds till I have the biopsy