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[hopereyes]

65 years old. I was diagnosed early stage (synthomless) in 2003. I am taking Urso 500. 3 pills a day wich I find a walmart drugstore ($114 for 90 pills) with a GoodRx card my Dr gave me.

My liver numbers are OK, but reading you guys, I realized I need to learn from your experience.

I am overweight and have osteoporosis.

[LindyRich]

Hello and welcome.

Can I just ask, are you still symptom free?

We all have a different journey with this condition, so it is helpful to share experiences.

It is a good idea to educate yourself. You can do this by joining the PBC Foundation. It is in the UK but anyone, whatever country they live in, is welcome to join. Like you said you can also learn from the experiences of others.

Pbcfoundation.org.uk

I also have Osteoporosis. I believe it is a common side effect of PBC. Are you being treated for it?

Best wishes

Lindy

[hopereyes in reply to LindyRich]

Thank you for your message.

Thanks God I don't have any synthom jet.

My liver pannel has been normal since three months of been diagnosed (13 years ago).

At that time Ursodiol was a new Canadian medicine in it's first year in USA.

My Dr explained me that my PBC was in a very early stage with no symptoms and no liver damage.

My mitochondria abtibodies were so high that they repited the studies. Then a biopsy and URSO and here I am.

Thanks for sharing PBC Founation link.

Best wishes to you too.

[LindyRich in reply to hopereyes]

Wow symptomless for 13 years. That gives me hope.

I have my 6 monthly ultrasound on 19th. Hope that's clear again.

Are you getting treatment for osteoporosis?

[Ballymahon2 in reply to hopereyes]

I am glad you are doing so well my gp has two patients with same condition as me they are treated with immune suppressents rather than urso dont know why

Are there other people on different treatments and doing well

[Hidden in reply to Ballymahon2]

i am symptonless pbc for 9yr have taken urso for 5yr

[Bonnieanne54 in reply to hopereyes]

i am surprised because i live in the states and have been on urso for 22 years. i too had no liver damage and the mitochondria antibodies are almost normal. dr said i would die of something else in my old age lol...i am 62 now and see a hepatologist who has me enrolled in some studies (they have no genetic data since its a newly diagnosed disease here.)

[Hidden in reply to Bonnieanne54]

my hep told me thr same would die with it not of it i am taking part in studies over here