Hi,
Diagnosed 2.5 yrs ago with PBC stage 3.
Non responder to urso, have tried OCA but temporarily stopped due to intense itch.
Since starting OCA I have had regular visits to liver nurse specialist. She tells me I now don’t need appointments with consultant as she can monitor me.
Is this the norm. Given that I am still not in a good place 2.5 years on with alt in 200’s?
Please give me some advice on what to do.
Jane x
In the US, that is not the norm. Usually you have the hepatologist monitor you. It’s different here.
Also it is not just the blood work. The hepatologist has a protocol of what tests to order for you. For example, fibroscans, sonograms, dexa scans, vitamin sufficiency tests. I would assume that the liver nurse will do this as well in addition to monitoring the blood work?
I’am in the uk, and I see the consultant once a year, with six monthly blood tests, and an annual ultrasound. And new to me is the 3 yearly sheerwave elastography. I would suggest you speak to the advisors at the PBC Foundation they can guide you.
I know of people who choose to be monitored by there gp, due to the distance they need to travel to a hospital, but never heard the hospital say you only need to see a nurse specialist, but is that signs of the times we are in.
Thanks Candy. I feel it is a sign of the times. The NHS is on its knees and although everyone works hard, I can see a huge difference from 2 yrs ago.
X
I think I would ask the nurse specialist to refer you to the hepatologist. If you cannot tolerate OCA and are a non responder to URSO then you need further advice which the specialist nurse, in my opinion, is not qualified to give. I doubt that she would be in a postion to prescribe alternatives which may help and are not licensed for PBC use.
As Hidden has suggested a bit of advice from the PBC Foundation may be very useful
best wishes
Hi starfish72,
Like you I’m a non-responder to urso and intolerant of OCA at 10 mg due to itch. I’ve dropped it back to 5 mg again but after a positive response inititially it plateaued so not sure whether it will be continued (My levels dropped but remain in the 300’s). I too see a specialist nurse although I do see a consultant from time to time. For me, this is fine as any problems she can’t deal with, she goes straight to my consultant anyway and I find I have easier access to contact her directly. I’m not sure if this is any help but perhaps confirm with her that she is being advised by a consultant or simply ask to see one to discuss your options.
Hope you get the help you need.
Best wishes,
Kate
just diagnosed with high cholesterol. Healthy weight and blood pressure. Could pbc be a factor
