Newly diagnosed with PBC - How often should I be monitored?

[AusDog]

Just been diagnosed with PBC. Not got a follow up or blood tests or scan until May 2021. Is this usual or should I be seen on a more frequent basis? Guidelines on medication say should have blood tests every month and then 3 monthly. Should I insist on seeing somebody before next year? I am totally new to this so no idea what I should be doing. Condition has only been diagnosed via blood tests so far with hardly any other symptoms. Help please. Thanks.

[Kakey]

May 2021 seems long to me too. I got diagnosed in April and had a telephone consultation in August, another one tba in Feb 2021. I had lfts done 3 months after starting Urso (arranged by GP), due again in November.

I hope this helps you a bit x

[AusDog in reply to Kakey]

Thank you. What is lfts?

[Laura009 in reply to AusDog]

LFT liver function tests. Blood tests to assess and monitor liver damage.

[Hidden in reply to Kakey]

Hi Ausdog

Join the PBC foundation, it is free , they also have a forum on healthunlocked. The information they have on their website is a life line for anyone with PBC,especially on first diagnosis. You can call them and they will advise you , their knowledge is second to none.

April is long time away ,have you been advised to have bloods taken and monitored by gp ? That way if your lfts don’t come down with medication or spike the gp can contact your consultant for advice. Your gp could also request an earlier appointment. I know my consultant is very good and has seen me whenever there has been changes and worked well with my gp with changes to medication.

Take care x

[AusDog in reply to Hidden]

Thank you for your advice. Very helpful.

[Laura009]

Hi Ausdog. Can l ask where in the country you are? A lengthy wait may well be due to covid restrictions in certain hospitals. Were you given any advice with regard to following a healthy eating plan, which foods to eat and which to avoid and to avoid drinking alcohol, so as not to further damage your liver?

Checkout PBC on the livertrust website and the NHS site where you will find good advice on how to take care of your liver while you are waiting for your appointments.

All the best

Laura

[AusDog in reply to Laura009]

I am in the UK, and yes, I think the delays are due to Covid. However, thank you for your comments which I have found very helpful.

[hells456]

PBC has many degrees of severity. If your PBC has been picked up very early on with a mild rise in your blood tests your doctor may not feel you need to be seen often. Do you know if your disease is mild?

Mine was quite advanced when found and I had a battery of tests and had bloods and saw my consultant every 6 weeks for 8 months until my ALP (the main thing they measure by in the blood tests) got down to about 200. Now I can be seen 6 monthly.

[AusDog in reply to hells456]

Thanks for your advice. I think the best option is to try and get in touch with the GP to get some blood tests re-done in about 3 months time and take it from there.

[Shadowwoj]

I would definitely keep on the to test you more frequently . Good Luck with everything