Hi everyone

[Purdy2017]

hi everyone how often should you see your consultant for pbc as its been over 2 years ?

[Buddy2017]

Last time I actually saw my Consultant was before lockdown. My appointment for 2023 is a telephone one again . This suits me as I always think actually going to the hospital is a waste of time . I was seeing the Consultant once a year before Covid .

[Purdy2017 in reply to Buddy2017]

ok thankyou yes im going to look in to it i should at least be getting a telephone consultation x

[Chris21]

when first diagnosed it was six months, when blood tests started to show within range it went to yearly and then 2 yearly. As buddy 2017 says it’s a phone call asking if all is well. I guess if my health were to change, I would get to see him sooner as I’m already on his books.

[Chrisprio]

I began with 3 monthly then 6 monthly appointments. When it was established that I was a responder to Ursodoxycholic Acid it went to yearly. It’s remained yearly but moved to telephone consultations throughout the lockdowns for Covid. It’s now going to alternate between in person and telephone consultations still yearly, from now on. The important thing is having bloods monitored. I would be concerned at this not happening yearly for myself.

[Purdy2017 in reply to Chrisprio]

ok thankyou for your reply everyone on here who has responded has said the same so im going to look in to it x

[Candy12]

My appointments were always yearly, with six monthly bloods and one annual ultrasound.

Then came covid and I now get yearly telephone appointments with six monthly bloods and one annual ultrasound.

My consultant said right at the start of covid , it would not revert back to, face to face appointments even without covid. It’s the way the healthcare system is going.

I would call your hospital admin team they can sort it out for you, or better still email them, (then it’s in writing) they can at least explain why you’ve not been seen or telephoned. You should get your bloods and scans regularly.

[Purdy2017 in reply to Candy12]

ok thankyou i think i will do that put my mind at reast x

[butterflyEi]

Annually but now that I am stable of medication and since Covid it has been a telephone call, which I am happy about. So long as my blood markers are checked each year and I have no problems then this arrangement suits me well.

[Purdy2017 in reply to butterflyEi]

right ok thankyou just thought that at least i would have some sort of coraspondence x

[roseter]

I'm back on 6 monthly as my ALP levels are high so they're keeping an eye on it. Usually its been annually on phone recently. So if they're happy they don't need to see you. Be happy

[Purdy2017 in reply to roseter]

ok thankyou

[58goose]

I was going annually but after my appointment in February 2019 I didn't hear anything in 2020 and 2021 which I put down to Covid. When I didn't hear anything early this year I phoned the hospital, only to be told my consultant had left in Feb 2020! Realising they had 'missed' me they got me a quick appointment with another consultant. Through him I found out I should have an endoscopy every 2 years - I hadn't had one for 5 years! So Purdy2017, please telephone to check out why you haven't been seen!!

[Debbiem40]

I see my consultant every 12 months now that I've started to respond to Urso. Before that it went up from 12 months to 6 months. I've been going to the liver clinic for nearly 20 years!

[21parker]

I am in the USA. I get blood work every 3 months, visit with the doctor every 6 months. I was diagnosed dec 2020

[PolAT123]

Hi

I only have 6 monthly bloods and then receive a letter from a nurse led clinic with the results and if anything has changed .

I do feel I should be able to speak with someone to discuss how I’m feeling .

[Rimeru]

It depends on the severity of your pbc. For my mother, we discovered it at stage 4 unfortunately so she has to see her doctor every 3 months

[Hils67]

hi Purdy,

pre covid I was having annual consultant appointments. Nothing during covid pandemic. I’ve just had an appointment through for a telephone appt in June 2023! So I rang secretary and asked what about this year’s appointment. I was told that they’re catching up on backlog. This is in Pembrokeshire, West Wales.

I’m really concerned as my LFTs are rising (I regularly ask my GP a to do a blood test…I have to complain saying my symptoms are worsening in order for them to agree to a blood test). Although, my GP often says my LFTs are ‘improving’ as they only look at previous test…not overall trend. I keep a graph of my results and there’s definitely an upward trend. I was diagnosed in Dec 2015 and found URSO didn’t do very much on its own but whenever I take a herbal medicine (formulated and prescribed by a qualified herbalist) I’m able to bring my numbers down a little, but still not in normal range, and I’m finding it difficult paying £60/month for the herbal supplement.

Good luck with pressing for an appointment 🙏🏻

Hilary

[ninjagirlwebb]

In the US, for peace of mind my hepatologist prefers that I see him and get my labs done every 3 months. Initially when I was diagnosed, urso was able to bring my alk phos number to normal. However in the last few years, they are slightly higher than normal. My doctor is monitoring the trends.

[Hils67]

hi Purdy,

I’m in Wales and pre covid I saw my consultant once a year, but next appointment will be 2 years. When I get worried I contact my gp and ask for a blood test. If the results are high then my gp speaks with the consultant for advice on prescription etc. so even though I don’t see him I have contact via my gp.

If you’re worried ask your gp for a blood test. If they resist just tell them your symptoms are playing up and you’re worried. And always ask for your numbers of your results. Too many times I’ve been told “blood test is ok it’s improving” but they only look at the last result not the general trend. I keep a spreadsheet of my test results so I can see any patterns and see if they correlate with any stress, lifestyle changes, dietary changes etc. it helps me feel in control a little bit.

[Aussielouise]

i see consultant every three months in Australia