PBC due to Covid-19? : Hi, I have recently... - PBC Foundation

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PBC due to Covid-19?

15 Replies

Hi,

I have recently gotten an AMA M2 positive blood test result, as part of panel testing for liver values. I initially got a result of raised ALAT value (103 if I remember correctly), which has since gone down to 49 (highest normal value being 50).

Snce my initial raised ALAT value coincided with me getting coronavirus, I have assumed that covid-19 has been the cause of also my (indicated) PBC.

So my question: Has anyone else here gotten PBC post-covid? Is the long-term prognosis the same as when getting it "otherwise"?

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15 Replies
ninjagirlwebb profile image
ninjagirlwebb

You can be ama -2 positive and not have pbc. Have you actually been diagnosed with it? There are people on here ama-2 positive and they don’t have pbc.

Did u also have elevated alk phos?

in reply to ninjagirlwebb

Thanks for your reply,

I have not yet had liver biopsy to confirm it, but from my understanding being AMA M2 positive pretty much means mainly PBC or PBC in a few years from now.

Michi1 profile image
Michi1

There’s a specific pattern of elevated ALT, AST and ALP, plus at least one other marker (Antimitochondrial Antibodies is one, which I’ve always seen reflected as AMA — not sure about the 2 in yours). You should see a hepatologist with experience in PBC. It’s extremely rare. Perhaps liver damage caused by COVID (which is a documented COVID-related injury) caused your elevated levels. If that’s the case it may be good news for you. I read somewhere they don’t think that damage is permanent.

Michi1 profile image
Michi1 in reply to Michi1

PS, there are also studies linking issues with the mitochondria (and hence the fatigue?) with COVID.

GrittyReads profile image
GrittyReads

A positive diagnosis of PBC requires 2 positive indicators tests. Having AMA M2 is one of those tests, but the presence of AMAs - alone - is not enough. [NB: The 'Blood Donor' process reveals that about 8% of the population 'naturally' just have AMAs ... and never go on to develop PBC.] It's been known I test +ve for AMA-M2 since my early 30s. I'm now 65 and still no signs of PBC - although I do have to have annual liver functions tests to make sure that nothing has changed.

It's possible that Covid may have caused this change, but ... if this has stabilised, I would stick to regular PBC blood tests, rather than rushing for treatment for PBC until it is certain you have it. Please talk to the people at the PBC Foundation, they are the expert advisors and are backed by an advisory team of the world's leading PBC experts.

in reply to GrittyReads

Thank you for your input and advice.

I truly hope that that is the case, that I will never fully develop the disease, but nature is so unforgiving.

I'm very happy for you. I also hope that this will not be the end of me. I will look into the foundation, feel like I need any advice I can get.

GrittyReads profile image
GrittyReads in reply to

Even if you do turn out to have PBC, or if you develop it years hence, the chances of of PBC 'being the end of you' are fairly slim. Most people die 'with PBC' in a happy old age - not 'of PBC'.

in reply to GrittyReads

You're right and I appreciate your input. There is no sense in worrying over what I have no control over either way.

I'll try to not be so negative, I am just quite emotional at the moment.

boneytoys profile image
boneytoys in reply to

Also sorry I should have said- it is hard coming to terms with p c and how it will relate and apply to you . Most of us have managed and others have suffered but generally we are living our beautiful lives abd are thankful for it. Relax and take care each day at a time.

in reply to boneytoys

Thanks for your encouraging words.

I agree, a positive attitude goes a long way. Life goes on.

boneytoys profile image
boneytoys in reply to

It wont be the end of youIt will c be e the beginning of a different you. We all here have PBC and we all in our own ways, have endured o ver decades. Life is for living

Diane62 profile image
Diane62

I think it very unlikely that Covid caused your PBC

in reply to Diane62

As I've gotten a lot of advice here not to assume too much prior to a diagnosis, I'll avoid speculating too much before anything is confirmed by a doctor.

With that said, I agree with you. PBC being caused by Covid in this case is more like covid having been a trigger for the disease, rather than the actual cause.

I will update the post regardless of what the final result/diagnosis is - once I know it.

Lauralee851 profile image
Lauralee851

Hi there, I just wanted you to know that I have known I’m AMA positive for years, maybe 7 now and at 35 I see my specialist regularly but still don’t have a PBC diagnosis. He says I have ‘a chronic liver condition’ but that’s as far as my diagnosis goes at the mo. When I was pregnant I got obstetric cholestasis and had to take Urso for a while then but stopped post natal. I’m very fit and healthy. There’s lots of people like me too so keep your head up :) also, a lot of people randomly find out they have positive AMA when having bloods done for something else so that isn’t uncommon either. You would probably have tested positive pre Covid I think. Take care!

in reply to Lauralee851

I'm glad you're doing good, and thanks for the encouraging words. It will be interesting to see what it turns out to be, although that process is likely to take months.

You're probably right about me testing positive prior to covid. Better to know the "bad news" beforehand rather than to live without knowing. Blessing in disguise-ish. Who knows how this will turn out.

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