Newly diagnosed PBC. A new free online guide for personalised conversation and questions for specialists

[Jo_Br]

This is I believe for newly diagnosed patients in time for their next appointment with a specialist, it's basic but handy if you were not told much at diagnosis.

I just ran through the guide, it's primarily for US patients but works for anybody. I feel it opened up more questions for me to ask too and as time is limited when you go to appointments it focuses the brain more. It's simple, fast and at the end, you get a personalised guide for questions to ask regarding your PBC. my-pbc-coach.com/

[butterflyEi]

Hi Jo_Br

Good to know that UK PBC people can also access this tool.

I am looking forward to the PBC Foundation health app.

Hope you are doing better.

best wishes

PS Just used it and have a print out, very easy to use. I notice it is promoted by Intercept Pharmaceuticals. They are pro active and I much appreciate their input.

[EileenUSA]

Thank YOU for pointing us to this resource.

[GrittyReads]

Looks good, but it is only for people who have definitely, already, been diagnosed with PBC.

Maybe the points - below - are covered elsewhere on this US site, but, just in case not: ...

I think it would be very helpful if there were something on what to look out for, exactly how PBC is diagnosed, and what to do if you are a borderline case.

Also what to do if you are one of those people who are being dealt with by GPs - or even consultants (it does happen - happened to me), who don't know enough about PBC and don't always follow correct diagnostic procedures.

It would also be good if there was something similar - but including the above suggestions - in the UK!

[Jo_Br in reply to GrittyReads]

Agreed in the main GrittyReads especially for rooting out GP, consultants with limited knowledge. Happened to me, well GP instantly researched and still is doing so. Two consultants left by the wayside for me, politely done, the first gave me a batch of meds that were frankly shocking. I did not take one as research found nobody who took it, reason I came here for my first post to ask who took it. The calcium routinely prescribed for PBC actually was causing huge problems. The second, once I asked him what do you know about PBC, said not much, as you can imagine I was off.

The above was used by me yesterday to do a check for knowledge as I did not see the hepatologist, I was relieved to find he was a Fellow in liver research ad so knowledgeable.

The only thing is many are asymptomatic and also not all of us research or are encouraged to, so correct diagnosis is hard, I am negative for PBC in the main tests done and taken 9 mths to get that alone.

[GrittyReads in reply to Jo_Br]

I just looked back through some of your posts, but am still not sure what you mean by being 'negative for PBC in the main tests done'. What have they done so far? Why are they saying PBC, if diagnostic tests not indicating it?? And have they tested for everything else - possible - that's liver and autoimmune related?

But thanks for the link, and hope you get a good Hepatologist who stays around!

Take care,

Gritty

[Jo_Br in reply to GrittyReads]

Hi GrittyReads I have PBC confirmed finally in June, but with more questions which were answered yesterday at the appt and today with Robert at the PBC foundation.

I am in the 5% that show negative for PBC so PBC AMA Negativepossibly as its not applicable to most PBC its not really entered people's radar and as you can possibly tell so much confusion for me, until I decided to research more and changed consultants over 10 months.

I have the Anti GP 210 positive along with M2-E3 BPO positive. Both these are markers that confirm PBC as well as the more aggressive/progressive form.

I am just about to make a post to mention this but struggling with fatigue from the hospital visit yesterday, both the length of it and possibly fatigue from the news. x

I will add more details as its not been discussed much, in fact 3 people have mentioned it and not had any answers and I have been trying to find out more to share what I know.

[GrittyReads in reply to Jo_Br]

Thanks for answering, especially as you are so tired. Thanks also for the info on yourself and also on the other markers of PBC, which are new to me. I will chase them up.

No need to reply, you take care and rest. I hope your situation improves and that you get all the answers you need, and that all improvement then continues further.

Rest, and once rested, try to remember to keep doing things that you love, that make you laugh and enjoy life. Avoid stress! Always the worst thing for all autoimmune issues.

Gritty

[Jo_Br in reply to GrittyReads]

Like very much and thank you so much for lovely words