PBC Foundation

Do I have PBC

I'm 69 y.o and was incidentally diagnosed with PBC 15 years ago following routine blood tests which showed 1:80 ama. I was prescribed urso 1500 mg daily. I refused to undergo a liver biopsy. I am still symptom-free and my LFTs still remain within normal range. Two years ago, I was confirmed as having Sjogrens. Symptoms are as yet restricted to xerostomia and xerophthalmia, so I'm not under medication. Antibody tests showed elevated ana, aca and ama 1:1280.

My question is should I continue with urso?

12 Replies
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Yes

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Did you get diagnosed just by a blood test with positive AMA?

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Yes. LFTs were normal and I had no symptoms at all, which remains the case after 15 years apart from an increase in AMA's

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I have positive AMA and smooth muscle antibodies and an enlarged liver and no one is diagnosing anything!! I have a fibro scan in April but from what I’ve read, that just detects scaring!! I’m so confused why I have to wait soooo long. I wish you well :-) x

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Thank you...good luck to you too. I'm not overly concerned because I've seen absolutely no change in 15 years, so don't despair!

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If you don’t have elevated LFT’s & Alk Phos, I suspect your fibroscan will be just fine.

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Thank you. I hope it is :-). My ultra sound showed an enlarged liver and slightly course texture so I am concerned as my antibodies point to Pbc and autoimmune hepatitis. I already have Hashimoto’s and I’m on levothyroxine

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An increse in amas would indicate pbc

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I would. It must be working. But, talk with your doctor just the same. 💟

I had positive AMA-M2 and elavated liver enzymes. After a year on Urso I am about the same, a little lower in my ALP but other LFTs in normal range. (Still positive AMA-M2)

Stella💟

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Do you have Raynaud? I’m just curious about your Ana, ama and aca. I have all three and I was diagnosed with PBC and Raynaud . Since taking Urso my LFT are fine 🤞🏻. I go on taking Urso

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No, I don't have Raynaud. I've developed really cold feet, but they have a healthy colour.. so far! 😉

My Lfts were always within normal range despite high AMA's, which is why I'm not even sure I have PBC, or why I'm on urso. But I definitely have Sjogrens.

I hope you remain stable 🙂

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If you only have AMA positive and no Phosphates or Gamma elevated, then you probably do not have PBC. But you could possibly develop it as per having +AMA (specific PCB marker) but anyway if you feel okay try no to think on illness and enjoy life.

I’m symptom-free and hope to be like this for long. My only problem is dry mouth when sleeping but try to solve it with a tablets stuck on my gums and help me to sleep some hours without Dryness.

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