Advice

[Starfish72]

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

[ninjagirlwebb]

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?

[Hidden]

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.

[Starfish72 in reply to Hidden]

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

[butterflyEi]

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

[Kateb17]

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