New to diagnosis

[Furycat]

Hoping to find advice on living with primary biliary cholangitis. Diagnosis was this week and ursodeoxycholic acid prescribed, don't get to see gastroenterologist until May. Would like to know as much as I can beforehand and have suitable questions to ask. Thank you 😊

[AyrshireK]

The British Liver Trust has page specifically about PBC at:- britishlivertrust.org.uk/in...

You may also find it of use to contact the PBC Foundation. They have a web page at:-pbcfoundation.international/

plus their own Healthunlocked community/forum at :- healthunlocked.com/pbc-foun...

Sorry to hear of your diagnosis but you are doing the correct thing in arming yourself with information so that you can make the most of any clinic appointments - get a notebook for your appointments. Jot down any/all current medications and doseages, any symptoms or anything of concern to you plus all your questions. That way you don't leave clinic with things still niggling, you can keep on top of your appointment and be your own advocate.

My hubby had liver disease due to Auto immune Hepatitis (and as it turns out PSC as well as was discovered after his liver was examined post transplant).

All the best, Katie

[Furycat in reply to AyrshireK]

Thank you, I will use all your advice wisely XOXO

[Readlots in reply to Furycat]

Katie’s advice is always excellent. I’m second generation PBC ( plus a few extras!). Just to reassure you that you can have a full and relatively normal life with PBC. Personally, I don’t drink and try to avoid chemicals that might affect my liver as much as possible. For example, I look for toiletries without parabens. I eat healthily and walk every day. There are 2main symptoms for PBC: fatigue and “the itch”. I’m lucky and don’t get the itch, but I’ve learnt to pace myself to manage the fatigue. I worked full time with PBC for over a decade, then went part time. I’ve found “spoons theory” helpful with managing energy levels. You’ll find your own way of managing.

There’s a charity called The Wren Project that helps people come to terms with an autoimmune diagnosis. I haven’t used them myself but they sound good.

And of course the BLT are a fantastic source of info and support.

Don’t Google PBC you’ll see stuff that’s out if date and not accurate which will alarm you.

[Furycat in reply to Readlots]

Thank you 😊

[Greenmarket in reply to Readlots]

What is spoons therapy please?

[AyrshireK in reply to Greenmarket]

It's the spoon theory, got to imagine your energy levels as a drawer of spoons. You've got to plan when and how you utilize your spoons each day because once all your spoons are used and drawer emptied it takes time to replenish them. A 'theory' commonly used in autoimmune issues.

[USmember]

I personally have been on Urso for 20 years, and my liver enzymes have been normal until about two years ago - I remain symptom free other than liver fibrosis and dry eyes (but Ilive in the desert). My hepatologist started me on Iqirvo a few weeks ago and follow up labs are not due yet. So basically this is a long term condition. I would refer you to pbcfoundation.org for starter information. There is actually a lot of information out on the internet, thankfully.

I personally do not drink, do not eat any processed foods, and am on a plant based diet, little dairy, no bad fats, no preservatives, dyes, etc. Regular exercise, good sleep, all of the 'usual' healthful things. Each step of the way I gather more information from the internet. For instance last year I saw an MD naturopath who put me on several supplements, including turmeric. My liver enzymes skyrocketed - only to discover on my own later on that to NEVER take turmeric with any kind of biliary blockage. I went through every. single. ingredient. she put me on!

I suggest keeping a very tight journal: what you are eating, medications, supplements, etc, and how you are feeling, while tracking your labs. For instance by doing so I discovered that my liver enzymes would go up every time I took the 'prescribed' dose of calcium. This is not typical and I am guessing I am just a rare case somehow...or maybe the only case - but keeping track was the only way I would have discovered this.

So, learn basic physiology about your liver and bile ducts, be very granular with EVERYTHING you put in your body - Thanks to AI this is not hard at all.

Once you have the basic information, any remaining questions you have you should take to your physician. Start studying like you are in grad school and you will have a lot of relevant information to present to your physician. I have made a hobby out of it.

Good luck on your journey!