Do I have PBC: I'm 69 y.o and was... - PBC Foundation

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Do I have PBC

12 Replies

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?

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12 Replies
Ballymahon2 profile image
Ballymahon2

Yes

LMor profile image
LMor

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

in reply toLMor

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

LMor profile image
LMor in reply to

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

in reply toLMor

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!

in reply toLMor

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

LMor profile image
LMor in reply to

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

Ballymahon2 profile image
Ballymahon2 in reply to

An increse in amas would indicate pbc

Ktltel profile image
Ktltel

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💟

Cladelol profile image
Cladelol

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

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 🙂

Cladelol profile image
Cladelol in reply to

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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