PBC Diagnosis, or COVID related

[Laurie62]

Hello, I'm Laurie, I'm new here. Not officially diagnosed yet. No Symptoms, High ALP for the last year, up and down a little, but mostly high, I lost over 150 lbs. in the last 18 months or so, 59 years old. Loving my new lifestyle, then BAM...Broke my leg really bad, both bones, broke two ribs, then got COVID from my care giver. Its been hard, mentally and physically. =[ Now PBC maybe...

The high ALP is not from the broken bones, We checked that. Liver Dr, wants to do a biopsy. Why? In all of your experience, could it be anything else? or from COVID? Have any of you had COVID, then diagnosed? Ultra sound of my inside was good, all other blood work good. Reading all the info available, which I have been doing for a couple months now, points to BPC. I don't want to do a liver biopsy if I don't need to. Your thoughts, ideas, similarities or any info that might help me. Thankyou so much. I'm having a hard time with this =[ I read what you all write, so caring and friendly, it gave me the courage to finally post this.

ALP 250 to 260ish.

GGT 137

AMA Positive

AMA Titer 1/40 abnormal

Anti Smooth Muscle screen Positive

Anti Smooth Muscle 1/320

Sincerely,

Laurie

[Hidden]

Hi! I think here in the UK it’s enough to have positive AMA result and high ALP to be diagnosed with PBC. They rarely do biopsy here unless there’s a reason to think it could be something else.

I was diagnosed nearly 3 years ago, whilst pregnant. ALP was 375 at its highest, AMA-M2 positive so that was enough to diagnose. I had a fibroscan 5 months after diagnosis which showed more fibrosis than my Dr was wanting to see. I’ve never managed to get my ALP below 200 (which is the current treatment aim) so I’m on 2 medicines now.

Whatever treatment you have I hope that you get a definitive answer, it’s really difficult when you don’t know what’s wrong x

[Laurie62 in reply to Hidden]

Thankyou Rosemadder9 for your reply. Dr. is pretty sure its PBC, but still recommends the biopsy. So who knows...Ill go with it. Dang COVID is an issue too. Not sure whether or not to get vaccinated...I've learned so much on this site! People are amazing here =]

[Hidden in reply to Laurie62]

I wasn’t sure of getting the vaccine either, not because I’m a non-believer but because I’m always really reluctant to have anything like that/new medicines, I don’t even take painkillers unless I’m incredibly desperate. I definitely will have it when it’s my turn though, I just don’t want to risk being seriously ill with covid x

[butterflyEi in reply to Hidden]

Prof Jones was on the Thursday presentations a couple of weeks ago and he recommended the vaccination, as a front line worker he has already had the vaccination. If you don't already tune in The PBC Foundation hold a Q&A session with a specialist every Thursday at 2 p.m. UK time. You can connect via Facebook or via a link that you can find on their web site.

[Laurie62 in reply to butterflyEi]

butterflyei, thankyou !!! I will find a way to watch. I'm US, Seattle area. Pretty sure Ill do the vaccine too.

[Skypony]

Hi Laurie, welcome!Oh poor you, you have had a rough time. I’m not surprised you’ve found all that very difficult, it would have floored a lesser mortal. Clearly you’re very resilient and you’ve found us, so well done! I hope you get much support here, and some information to help you on your way.

Your profile is not unlike mine when diagnosed; the anti small muscle antibody that I had eventually disappeared (it’s not very specific) while +AMA, raised GGT and ALP which are typical of PBC remained. Is your hepatologist looking just to confirm PBC (as previous poster said, not usually considered necessary) or to exclude autoimmune hepatitis? Or any other reason, like staging? Worth asking perhaps. As PBC seems likely, perhaps treatment could be started soon. Ursodeoxycholic acid is what we’re usually given first. Don’t be afraid to advocate for yourself.

The science says that covid vaccination will protect most of us to a good degree with few risks. I guess your natural immunity will last a while, but there’s a lot we still don’t know. I shall have the vaccine when offered.

About the wider picture, sounds like the worst is behind you. I would encourage you now to feel that your questions (or most of them!) will be answered in time and you will move towards feeling happy and confident again. Whatever the diagnosis, uncertainty is generally the worst part and most of us have been there and come out of the woods into the sunshine again.

Best wishes.

[Laurie62 in reply to Skypony]

Skypony!! Thankyou for your help. I'm pretty sure the biopsy is to answer all the above things you mentioned. I am so happy I found this site! It makes feel less scared, and not alone =] Thursday the 26 of January is when it is scheduled.

[Grams2020]

Hi! I’m in Canada. I am presumed to have had COVID March 2020. My Dr. believes I had it without being tested. Didn’t feel well for months. He checked my liver enzymes and ANA and AMA. Both positive with slightly elevated enzymes. Like you, I’m prediagnosis stage, referred to a Gastroenterologist who started me on n Urso December 2020. He tested for the anti-smooth muscle which was weakly positive. He told me to have blood work done for the next three months and then if levels don’t decline after being on Urso that he might have to do a liver biopsy to diagnose AIH/PBC overlap. My fibroscan and ultrasound were normal.Just had my first blood tests results and my enzymes are all normal.

I have wondered if COVID triggered this. I’m 65 years old.

[Laurie62 in reply to Grams2020]

Thanks so much Grams2020 for the information!! Sounds like we are pretty much dealing with the same thing. Same time frame. I think I'll do the biopsy just to be sure. Not wild about doing it, that's for sure, but...this Thursday ( January 26th is the day.) I wish you luck with your diagnosis too. I would love to keep in touch. I am soon to be 59 years old. =]

[Grams2020 in reply to Laurie62]

Sending you positive thoughts, Laurie. And yes... let’s keep in touch!

[Jennyhadenough]

I’m sorry, that you are dealing with autoimmune disease. Hopefully you have good people in your life. Did your Dr talk about autoimmune hepatitis over lap

[Laurie62 in reply to Jennyhadenough]

Hi Jennyhadenough. My Dr. did not talk about it. I have researched it though. Will a biopsy reveal if AH is present also? I'm still trying to figure out my blood work that came back today...new stuff.

High Ferritin, ABs Eos 6.6 and ALT and AST back up again...ALP raised too...

Cant find if the ferritin and ABs eos is a PBC thing or not?

Hope you are well today =] Do you have both?

[ninjagirlwebb in reply to Laurie62]

A biopsy can help the doctor diagnose better when blood work does not give a clear answer.