primary biliary cirrhosis

[Magicsoul]

hi, anyone else had positive AMA antibodies with no symptoms?? I’m told I will develop primary biliary cirrhosis. I’m concerned that this will be life limiting.

[MINTVCX]

As far as I know positive AMA antibodies is only a start point of diagnosis.

"If your test results are positive for PBC, your provider will want to look at images of your liver and biliary system next. This helps to rule out other possible causes of your symptoms, and can also help show how advanced the disease is. They’ll usually begin with a simple test like an abdominal ultrasound. But sometimes, they may need to take clearer images with some type of MRI (magnetic resonance imaging)."

"I will develop primary biliary cirrhosis" Even if this true (the speed of progress of PBC is different for each case rather slow), there is hope with liver transplant. Take care and listen to your doctors (do not be afraid to ask them if any doubts). Good luck.

[Magicsoul in reply to MINTVCX]

Thanks for the reply, my post wasn’t very clear, my positive AMA was discovered by accident in 2015. Had loads of scans etc looking at my biliary system. Discovered that I had biliary dyskinesia few symptoms so was just put on a watch list. 3 years ago I had a few gallbladder attacks and subsequently had my gallbladder removed with great results. No issues with that since. When discharged from heptologist in 2016 he ordered LFT test every 3/4 months, GP will only do every 6 months and yearly B12. B12 was 130 consultant put me on 3 month injections which was great for my symptoms. After 6 years Gp won’t let me have injections anymore as level was 288….,I explained that was because I get the injection. Answer was still no now it’s back to 163. LFT have always been stable but my last was elevated totally different from the last 7 years. I’ve developed itching and I’m worried some disease may have started but GP doesn’t take me serious. I’ve never been offered Urso. How do I get the Gp to refer me to someone with more knowledge of PBC?

[Bantam2 in reply to Magicsoul]

Hi

Go back to GP and say the itching is becoming unbearable and affecting your day to day life. Itching can be a classic sign that your liver is struggling and is sometimes the only symptom you may experience. If you have been previously diagnosed with pbc then Urso can slow the process. Many people live with pbc unaware they have it.

I had a liver transplant in Jan combination of alcohol related and PBC. I still take Urso now as still itch but my consultant has said that should slow any pbc progression so that it doesn’t effect my new liver so much that I may require a second transplant in my life time. I’m 53.

You may never need a transplant but the itching can become unbearable- it’s like having tiny ants crawling under your skin.

Don’t be fobbed off

[Magicsoul in reply to Bantam2]

Thanks for the encouragement appointment with GP is next week and I wish you a speedy recovery ❤️‍🩹

[Bantam2 in reply to Magicsoul]

Hi

How did appointment go.

Ta

[Magicsoul in reply to Bantam2]

Hi,

GP is doing a referral to gastroenterology due to my itching…thankfully. Hopefully I can get reassurance from a consultant as the GP knows nothing about PBC and start Urso if it’s needed.

[Bantam2 in reply to Magicsoul]

Well that sounds positive. The Urso really worked for me with the itching and although it affected my stomach initially all is good now so well worth the initial side effects. Take care

[LorraineLouise]

I was diagnosed in 2016, with PBC. I was 59 years old. I’m now 66. I have been on Ursodiol since then. It slows down the progression of the disease. I lead a normal life. Still work and travel. Recently, I was also diagnosed with rheumatoid arthritis. Not unusual to have more than one auto immune issue. I do get tired easily. But I think that’s more due to my age, rather than anything else. Worrying is not going change anything. Live your life. Surround yourself come up with a Great medical team. And as I was told, I will die with PBC, not from it.

Enjoy and I hope this helps you !

Lorraine Louise

[Magicsoul in reply to LorraineLouise]

Thank you I feel reassured, but did you get put on Urso due to positive AMA antibodies or was there evidence of some cirrhosis. Should I have been put on Urso when they found the AMA antibodies?

[LorraineLouise in reply to Magicsoul]

Yes, I was having colon resection surgery due to diverticulitis. When they saw my liver. Which was already in cirrhosis. Then a biopsy was done, among other labs, results showed PBC. I was never a drinker of alcohol. And I really had no symptoms. So I was early in my cirrhosis one it was found.