Diagnosis: I was diagnosed with very early... - PBC Foundation

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Ellyne profile image
19 Replies

I was diagnosed with very early stage PBC from a hepatologist. I had slightly elevated LFt's AMA M2 was 1:640. All other tests were normal. Fibroscan was 5.2. I have been on Urso for 2 months and I take my LFT again in mid May. Will I know if I am a responder from those tests?

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Ellyne profile image
Ellyne
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gwillistexas profile image
gwillistexas

My 1st fibroscan was September 2017. My dr said will repeat 1 year to check progression & see if med is working at keeping inflammation & fibrosis at bay.

Ellyne profile image
Ellyne in reply to gwillistexas

I also had a liver biopsy this past October 2017 which showed many ducts surrounded by granulomatous inflammation that could be considered diagnostic duct destructive lesions of PBC. Had these slides evaluated again by the Hepatologist and the 2nd pathologist and they both feel it is very early stage of PBC. I feel like I keep repeating myself so that all of this actually sinks into my being. Sorry for being so repetitive. And above all thank you all for being so helpful and supportive.

gwillistexas profile image
gwillistexas in reply to Ellyne

It’s ok. You will find your own way of accepting & dealing. Took me a long while.

kimphoebe profile image
kimphoebe

Hi there

Think you need to be on uso for a while longer maybe a year before it shows if you are a responder or not. A fibroscan score of 5.2 is really good news shows no damage at all. Being dx for 6 years now and never responded to uso so my last fibroscan score was 16.3. Now I am currently on a clinical trial and is showing excellent results bloods being normal at mo for first time. It early days for you yet so don't stress to much as there are new meds on trial all the time. Hope this helps

Ellyne profile image
Ellyne

Thank you. It does help.

ninjagirlwebb profile image
ninjagirlwebb

The urso should bring your LFT’s back to normal if it works for you. Mine were also slightly elevated when diagnosed. Think hepatogist did blood work a month later & it was normal.

KevinHall10_ profile image
KevinHall10_ in reply to ninjagirlwebb

I have a question about lab testing, if i remember right it was said even if ur labs are in normal range rhat doesnt mean your still not progressing. Did i totally misunderstand this?

ninjagirlwebb profile image
ninjagirlwebb in reply to KevinHall10_

Someone on this site on another thread said that it was what their doctor told them. I haven't come across any research on this. But I think if your numbers including alk phos are stable then your doctor won’t be as concerned. They have nothing else to go on other than these blood markers.

gwillistexas profile image
gwillistexas in reply to KevinHall10_

KevinHall10...I have read this as well which is a little confusing. I am asking Dr when I go in June. Seems to me when labs are good, that’s an indication the inflammation is under control. Again, from what Dr Gish, liver specialist on Roundtable discussion said, ALP is concerning ducts. AST & ALT concern liver itself.

ninjagirlwebb profile image
ninjagirlwebb

Also did they test the ggt levels? If they were out of reference range, urso would lower it.

Ellyne profile image
Ellyne in reply to ninjagirlwebb

The ggt levels were not out of reference range. Getting LFT's done Mid May.

ninjagirlwebb profile image
ninjagirlwebb in reply to Ellyne

I am sure you will be fine as your pbc was diagnosed in early stages. The prognosis is very positive in this situation. Dont dwell on this while waiting on May tests. Go shopping or do something fun to keep mind occupied. 🤗

Ellyne profile image
Ellyne in reply to ninjagirlwebb

Good advice!

Haking profile image
Haking

Hope you are feeling better, yes you will find out if URSO is working for you from the blood test but meanwhile try to help your liver. I have been diagnosed about 6 years ago, but my test result has been ok so far.drink at least 8 glasses of water a day green juices and I have a glass warm water with juice of a lemon first thing in the morning.

I have been reading the books on how to reverse autoimmune disease, and although I take any of the tablets they offer, I only follow the actual food.

Hope your results are good.

Ellyne profile image
Ellyne in reply to Haking

I need to push the water. I don’t drink as much as I should. I do drink the warm water throughout the day. Why the lemon?

Haking profile image
Haking in reply to Ellyne

I believe it rid of fat staying in your liver

Haking profile image
Haking in reply to Ellyne

Don't panic, stress would make everything worse. Think of it as you were lucky it was diagnosed and now you deal with it.

Benefits of Lemon Water: Detox Your Body and Skin - Dr. Axe

draxe.com/benefits-of-lemon...

21 Jun 2015 - Lemon water also helps relieve indigestion or ease an upset stomach. The acids found in lemon juice also encourage your body to process the good stuff in foods more slowly. ... Lemon water benefits the enzyme functions in your body, stimulating the liver and flushing out toxins.

Haking profile image
Haking

sorry it should say although I don't take any of the tablets

Ellyne profile image
Ellyne

I knew you meant that.

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