Questions for consultant

[Alley27]

Hi everyone. I finally have a consultant appointment at Pinderfields and wondered what questions to ask seeing as it's almost 2 years since I have seen anyone other than my GP. I am AIH PBC overlap and recent bloods revealed that my AMA are raised despite taking urso. Just need some ideas thanks xx

[EileenUSA]

Hi,

Are you a member of the PBC foundation?

pbcfoundation.org.uk

If not, you should join the PBC foundation ( they are the sponsors of this support forum).

Go to the PBC foundation- link above. ( it's a separate membership from this peer support group)

You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.

once you join the Foundation- log in and you will have online access to the quality, vetted medical info on PBC.

Under the existing members menu you will find a document called "compendium" Once you open this document scroll down to FAQ's and you'll find info about on AMA and other abbreviations from blood work results.

ALSO for questions to ask the doctor-- check the sumner of 2017 "Bear Facts" Newsletter - it's on the foundation website ( for logged in members)

The newsletter has a pullout section with great info and specific questions to ask the dr,

Hope this helps.

[butterflyEi]

Hi Alley27

Do you have any printouts of your blood results? This wisdom seems to be that these are best kept over several years to see trends. You may be able to get the most recent from your surgery.

You know in yourself how you are feeling - are you on medication for the AIH? Have you had a dexa scan to measure your bone density? I went for over 5 years without GP or specialist control but when I needed to get some help the new hepatologist that I waited 9 months to see ordered and endoscopy and an ultrasound and a bit later the dexa scan which I think shows that I have osteopenia but am waiting on my next appointment (who knows when) to get the results. (The DEXA scan also has another name but I cannot remember what he called it!)

I am also in the UK and know how frustrating waiting times are. Eileen has given you a good heads up on where to go for information and I am sure that more people will come along soon to give more help. Not having overlap I cannot help with any personal experience.

let us know how you get on

best wishes

[PBCRobert Partner]

Hi, Ally27.

First off, what would you like to know?

PBC and AIH (even within the overlap) are treated separately.

PBC should be addressed with Urso, in a weight-appropriate dose. In an ideal world, Urso will improve your liver biochemistry (often called Urso-response), particularly Alk Phos. Occasionally, people who respond to Urso find their AMA reduces (and even sometimes normalises) but this doesn't seem to have any impact on PBC or its symptoms. So, not lowering AMA isn't necessarily something to worry about.

AIH has different biochemistry tests associated with it (including ALT and AST) and is treated with a fluid combination of steroids and immunosuppression.

So, some of the important questions may be:

What are the trends for my liver biochemistry? a) PBC b) AIH

Can I have a scan (e.g. fibroscan) to measure fibrosis?

If I am not responding to any particular aspect of my meds, would it be worth a liver biopsy to look at my particular cell damage within the liver?

PBC/AIH overlap is quite a specialised subset. It may be helpful to call the Foundation (even before you join) to look at where you are and to see what information you need to best help you on your journey.

Yours,

Robert.

[Alley27 in reply to PBCRobert]

Hi PBCRobert thank you for the help with questions for consultant. I went for my appointment on 17th and he was really nice and also very thorough. I asked him a range of questions and as far as I know he answered very well. I have been given ursofalk liquid suspension because the tablets disagree with me. He also has put me on a gluten free eating regime he said it has been known to help especially with overlap. I have to go back and see him on 14th June and I will ask about having a scan to try and stage where I am at with the pbc. I knew something not quite right and as suspected my liver is not well at the moment. I know becsuse I cant wzlk too far without exhaustion. He suggested semi retirement because my job is very demanding. I understand where he's coming from because after work I have no energy to do anything else including housework or exercise. I will have to think about that one. As for the diet...My bloating seems to have settled down a little bit, but again that could be the change in type of urso. Thanks again x