New and anxious

[Irisw]

Do you think most PBC ers will need a transplant at some point?

[Angel_b]

Hi Irisw

No I don’t think so. I believe it’s only a small percentage that need one. They say that we are more likely to die with pbc than from it.

Have you joined the pbc foundation? Like you I was very stressed when I was first diagnosed and had went straight into google. Unfortunately a lot of the information there is out of date and not very accurate. I joined the pbc foundation, it’s free and there is a compendium which explains everything about pbc.

Try not to stress too much (easier said than done I know). And any questions just post on here. There’s usually someone around with the answer.

Best wishes.

[Irisw in reply to Angel_b]

Thanks so much! Glad I found you all

[ksimc in reply to Angel_b]

from what I have been told once ure liver function is normal after you start taking medication for your PBC your life expectancy is as for normal population and the meds prevent further damage to liver so liver transplant is not necessary. Its a matter of accepting it then living with it. once you have it, PBC is there for always.

[ninjagirlwebb]

No; in the past patients were diagnosed at much later stages where the liver was already damaged. Hence, transplants.

Nowadays, routine labs pick up on blood abnormalities more frequently & if you have a competent doctor, they are apt to investigate & diagnose pbc at its early stages. Per my hepatologist, pbc patients who are treated early have the same life expectancy as the average normal population.

This is why I feel that everyone should get an annual physical, get copies of the labs & discuss anything that is out of range with your doctor. Helps to be vigilant when it comes to our health.

[Ballymahon2]

Hope not

[DoreenD]

No I was diagnosed 30 years ago and still doing ok with my own liver. I never worried about it after about 10 years as never knew any one else with PBC.

[Jacqui0112]

Hi

I've only recently been diagnosed too. Started taking Urso (1 tablet for a month, then 2 for a month etc), After 6 weeks, my itching completely stopped and my bloods are normal! Please don't worry, keep taking the tablets and then forget you have it. Go and have fun x

[donna01 in reply to Jacqui0112]

Jacqui0112, I am curious, what dosage is your Urso? They put me on 3 a day right away at 300 mgs. I realize they go by body weight. I weigh 145 lbs. The itch doesn't stop for me and usually is worse at night. Also, are you on tablets or capsules?

[Jacqui0112 in reply to donna01]

My consultant said that I should start with 1 x 259mg capsule for a month, then go to 2 capsules and then month 3 go to 3 capsules. This apparently minimises side effects and allows your stomach to get used to the drug. He also gave me Questran light sachets for the itch. It binds the bile preventing it from circulating in the blood stream. It takes a while for it to work, but I really recommend giving them a try. Good luck x

[Biddyb]

You now need to treat your liver with care and eat healthier drink less alcohol and exercise a little. I hope you have a good GP who understands the condition and use this site as many members have some good tips. Good luck and enjoy life