PBC

[DoreenD]

Hi for new members, I am Doreen and was diagnosed with PBC over 30 years ago. So don't think it it cant be controlled IT CAN and you can live a fairly normal life as long as you pace yourselves as the fatigue can get you down.

Doreen

[Sydgal]

Hi Doreen,

Thank you for your post, your an inspiration to us new PBCers, reading your post surly gives me some hope.

[PBCCarol]

Welcome Doreen! I have also been living with PBC for a while - 22 years and have been at stage 4 all that time. Your long journey and experience with this disease will help support those asking questions. I look forward to your participation

[Sydgal in reply to PBCCarol]

Hi Carol,

So you have been on stage 4 Fibrosis for 22years?? Where you diagnosed at stage 4? That is great that you are still doing so well.

Thankyou for sharing 🙂🙂🙂

[PBCCarol in reply to Sydgal]

Yes when I was diagnosed my biopsy showed I had reach the cirrhosis stage of PBC. I was really sick , itching and jaundiced. I started URSO then my numbers and general health improved. My labs have never returned to normal , they remain a little higher than normal but stable. I have developed varices that are controlled with a beta blocker but otherwise moving along!

[Sydgal in reply to PBCCarol]

Thank you Carol

It is good to hear that you are doing much better now, you are an inspiration to us new PBCers.

[Bama_girl in reply to PBCCarol]

Thank you for your uplifting response. Gives us faith and hope that we can do the same! I was diagnosed in 5/2001 early stage, and am doing GrEaT as well. Alka Phos has never come within normal range, but other than that, I am symptom-free, Have energy and feel good! So blessed and thankful!🙌🏻

[Sona_akb]

Thank you for your post dear Doreen. You’re my inspiration. I wish I could come and make same post 30years later.

[Sydgal]

Besides taking URSO, are you taking anything else to assist with the liver? 🙂👍

[DoreenD in reply to Sydgal]

I don't know if you are taking Vit D and Calcium as that is what my doctor put me on as PBCers don't absorb Vit D very well. I also take CoEnzime Q10 doctors recommendation as it helps with fatigue.