Help with my conditions

[wendleberg]

I have had PBC for 8 years. I am on Urso but have recently had a Fibroscan which has said I have advanced fibrosis. I asked the nurse who rang me what this means. She didn't give me much of an answer other than lose weight and do exercise. I feel like I see the specialist every 6 month's but don't know anything about rthe disease I have. I don't know what to do other than put up and shut up. Does anyone have any advice

[Redgreenblue]

Hi,

I have only just joined and noticed yes this was 1 year ago when posted but ill still answer lol

Frustratingly and in my experience if they don't explain in detail to you there and then when giving you the diagnosis, ask them directly and explain that you don't fully understand the disease itself and ask them to explain it more in detail for you, if you have specific questions then ask them they might be able to discuss in more detail about the disease this way.

I was diagnosed with NASH Fibrosis 1 and have to go for yearly checks also part of the litmus registry for clinical research, but in order to be part of the registry I think you need a biopsy proven diagnosis.

I hope you are still not stuck in limbo without information.... Fibroscans are not the most accurate way of diagnosing the extent of fibrosis, biopsy is the best way, but its more invasive way of getting an accurate precise diagnosis.