Recently Diagnosed

Hi

So I was diagnosed on Sept 13/16 PBC, in cirrhosis stage. I am a bit confused as I have been having my blood tested yearly as my dad had PSC and ended up having a liver transplant , and my sister was duagnised with PSC about 8 years ago.

She is doing good on urso and no sign of cirrhosis. My levels were always find til July 2015, tgen higher again in Jan 2016 and again July 2016,, I saw the Liver specialist in Sept and was told I have PSC , cirrhosis. My liver is quite scarred, I do not understand how it can be so bad when blood work just started showig high levels.

I am on urso, 1500mg, 3 month blood work, 6 month ultrasounds, and having a colonscopy in Dec,

Any thoughts?

3 Replies

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  • So sorry this has happened to you, but you have come to the right place to get lots of help and support.

    Read around lots of the posts on here, to get an overview of PBC in all its variety (!!), but also check out the 'PBC Foundation' (they host this site on 'Health Unlocked'): there is a link to their site at the top of the page. You will find loads of info on there, and if you join (it's free) you get their handy 'PBC Compendium' which will tell you most of what you need to know. You also have the option of talking to their trained advisors - email links and phone numbers, on the site.

    It helps to learn a lot about PBC as it is fairly rare, but also quite different in most people, and even liver specialists don't always get to treat it that often. Are any of your other liver function tests (lfts) abnormal, and what did they do to be certain of the liver scarring? That is, did they do a biopsy, or fibroscan or is it based on an ultrasound? I would ask others, on here, about that ... as I'm not sure what's best for checking the degree of scarring.

    I would also start asking your GP's receptionist for copies of all your lfts, whenever you have bloods done (if you are in the UK, it's your 'right' under the NHS, but there might be a small charge for copying even recent ones), but it's helpful to chart your own progress. Gradually the levels should fall now you are on Urso. Also, if you can get copies of past tests (without it being exorbitantly expensive, as they'll also charge for 'search time' etc. ), you can see how much has been ignored and for how long. You might want to ask why the ALP was ignored for so long, as it is. Can you see another GP if you are not happy with the one who didn't do anything?

    Finally did they test you for other liver conditions, and check for other autoimmune conditions (another reason for getting your records)? There are different sub-types of AMA, which are more linked to other conditions, and ALP can be raised in other situations too. When I was found to have AMAs, (I don't have PBC yet, all lfts perfect, just AMAs) my GP was told to test me for everything liver and autoimmune related - which he did: he was ace, a sweetie.

    Above all, try not to worry. Stress is the worst thing for anything autoimmune, so as well as starting to take control of your condition, make sure you are enjoying life!! I know that's easier said than done, but try to have fun, do things you love, treat and nurture your self, and get everyone else to join in too - best way to deal with these pesky illnesses.

    Take care.

  • I'm sorry to hear about the diagnosis :(

    I'm on 1500mg of URSO as well. I hoe you respond well to it.

  • Hi - sorry you're going through this...what stage PBC are you in? I'm sorry you're in cirrhosis already :(

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