New to this

[HULK80]

Hello my name is chad so I had high levels of AMA and my doctor referred me to a specialist for a biopsy. I am scared with this whole thing can yall tell me y'alls experience with this disease.

[HealthyChik]

Hi Chad,

Welcome to this group. I was diagnosed about 8 months ago. I think anyone who has been recently diagnosed probably Googles the disease and frankly, gets scared to death. Don't be alarmed by what you may read. This group and the PBC Foundation are the BEST places to get current, reliable info. There are folks on here who have lived with PBC for many,many years and they are doing just fine. After the initial adjustment period, you'll settle in to a normal life.

My PBC was discovered during routine blood work by my primary doc who referred me to a GI doc, who did further blood tests and made the diagnosis. After that, I asked for a referral to a hepatologist just because they specialize in liver disease and I felt I'd get the best care. I was not keen on a biopsy, so my doctor was agreeable to put it off for a while since I am in the early stages. I've had a fibroscan and a MRE which measures liver stiffness and provides a good idea as to whether you have any fibrosis. I'm not discouraging you from having a biopsy as there are plenty of viable reasons to have one, and they do provide some information that less invasive tests can't. I was started on 900 mg of Urso per day and have responded well so far. My labs are "almost" normal. You'll find out by reading on here that everyone has a different experience with PBC. Some have symptoms, some don't, etc. I hope this is helpful and I'm sure others will chime in.

[HULK80 in reply to HealthyChik]

Thank you for the info and support, I'm waiting on my doctor to call me hopefully in next few days to schedule the appointment. How do you know if you caught it early?

[HealthyChik in reply to HULK80]

In my case, I'm going by my doctor's opinion. I had access to earlier liver enzyme tests, so we know they haven't been elevated for that long. Also, my MRE showed minimal fibrosis (stage F0-F1). However, I am still newly diagnosed, so my next follow up appointment is in a few weeks. I am currently seen every 3 months to basically recheck blood work to be sure I'm responding to Urso. I can only hope that the Urso will slow the progression of the fibrosis by keeping my alkaline phosphatase down.

[HULK80 in reply to HealthyChik]

O ok the reason I think he checked my AMA is bc my bilirubin has been elevated

[HealthyChik in reply to HULK80]

Were your liver enzymes elevated as well(alkaline phosphatase (ALP), ALT,and/or AST)? The reason I ask is because there is a very specific criteria for diagnosing PBC. Positive AMA-M2 antibodies is only a part of the criteria. You can get the details required for a PBC diagnosis from the link that EileenUSA sent you.

[HULK80 in reply to HealthyChik]

He said liver enzymes were normal

[HealthyChik in reply to HealthyChik]

And sorry for assuming you had a definite diagnosis. It sounds like they are still trying to figure things out and I'm sure that is nerve racking

[HULK80 in reply to HealthyChik]

It's ok my doctor asked me if I wanted to get a biopsy bc of the elevated bilirubin and AmAs but that's the only reason everything else was normal he said liver enzymes were to. I didn't see the alp, or any of them that you mentioned maybe it was another one that test liver enzymes

[HealthyChik in reply to HULK80]

I'd definitely have a list of questions lined up. Do you have access to a patient portal to see blood tests results? That may help you with what questions to ask. I am definitely in no place to form an opinion, but there are folks in this forum who are positive for AMAs but do not have PBC. There are other possible liver conditions. Good luck sorting things out with your docs and feel free to ask anything on here. People are so helpful😊

[HULK80 in reply to HealthyChik]

Thank you and yes I do have a patient portal with all my lab results on it

[NFTom in reply to HealthyChik]

The biopsy was very easy for me. It took about 5 minutes then you will have to lay still 2 hours or so afterwards in the hospital to ensure no bleeding.

[EileenUSA]

Hello,

Here's a great primer on diagnosis and treatment and it offers a well laid out set of questions to discuss with your dr. Check it out.

pbcfoundation.org.uk/upload...

HealthyChik already gave you some great advice too.

Glad you found us, the support and knowledge here is awesome.

[Vespa27]

Hi chad and welcome to the group. I was diagnosed 7 years ago. At first I was in a mess because it came from nowhere and I had no idea how to manage it. I have PBC AIH overlap. I can only say, listen to your doctor, and take the medication it really does help. But most of all, listen to your body. If it said you need to sleep then sleep because the fatigue is awful. Every one of us are different when it comes to symptoms, and you will find the best way for you to cope with yours. Every one on here are very helpful, even if you need to just vent. Join the PBC foundation as well because they are very helpful. As for the biopsy, dont stress too much about it easy to say I know, but it is really not too bad, just uncomfortable and its over pretty fast once they are in there. The boring thing for me was afterwards laying flat for four hours, so take your favourite book or game with you. The disease itself whilst rare, is manageable with life change, medication and good doctors, but I found that I had to educate myself, because my gp though very good with me, didn't know enough about my condition, so we have grown together along the way...life change is necessary though, I am learning this as we speak because I have been declared permanently unfit for work either full or part time. This is a change I am not looking forward to because I have worked very hard and love my job, but needs must as I am feeling it now. Good luck with the biopsy and take care .

[HULK80 in reply to Vespa27]

Thank you and I'm doing a lil better and trying not to worry I dont have any symptoms and go to the gym everyday

[EileenUSA]

Good that you reached out here as we have all been through our own path in diagnosis and doctor visits etc. Regarding the biopsy- Remember doctors might be "offering' a biopsy BUT you can and should ask the doctor:

1) What is it we are trying to find out?

2) Why is that information helpful?

3) Is there a better way to find that information?

having this conversation can make you feel more confident in decision making on whether or not to have a biopsy. I'm glad you went to the gym! Live your normal life. Take things a step at a time-

[HULK80 in reply to EileenUSA]

Well I just got my blood results back like yesterday and he asked me if I was willing to see a gi doctor and have a biopsy I was freaking out and wanted to know what was wrong so I said yes so my gi appointment is scheduled for next Wednesday so I might talk to him and ask those questions thank you

[EileenUSA in reply to HULK80]

Like I said above- take things a step at a time. GI dr should review all the lab results with you and what they propose for further tests.. and WHY? also IF they propose doing a biopsy-- I repeat what I said- before having any 'invasive test" a good dr will be able to give GOOD answers to questions: You decide based on collaboration with the doctor. Before I had a biopsy I had this information. I ALSO asked the hepatologist how many of the procedures she had done. ( she had NO problem with me asking this, she had done almost 1500 btw)

So-- again its reasonable to ask regarding blood work and biopsy:

1) What is it we are trying to find out?

2) Why is that information helpful?

3) Is there a better way to find that information?

I would assume that you are just having a first consultation with the doctor and then a plan would be discussed. You have a right to be comfortable with this doctor and with the proposed course of action. You will be okay- you WILL get through this diagnostic period. We've all been there.. Don't panic. Keep yourself distracted with some good things this week until the appointment. You have every reason to be optimistic and it's good that they are going to look in to this.

[Noomum]

Hi Chad, I had a liver biopsy a couple of months ago. I was panicked and frightened but it was actually painless compare to what I had feared it would be like. Whole procedure was over quickly. I felt some pressure at the start of the procedure but that was it. You need to lay very still and then rest for 4 hours after (also avoid gym or heavy activity for up to a week after) - I have honestly had more painful dental procedures. Good luck.