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[kingsnorth]

Hi im Christine 67 and was dianosed with pbc 2 weeks ago by way of biopsy l also have lupus and sjogrens l started urso 2 weeks ago and got to see my consultant again in June. I must say this diagnosis has totally floored me and im worried for my future.

[Hidden]

Did your dr stage you? If you respond to Urso it’s supposed to move slowly

[kingsnorth in reply to Hidden]

Consultant has mentioned a stage yet

[Hidden in reply to kingsnorth]

Was the amount of damage mentioned if any

How high was your alk when diagnosed

[butterflyEi]

Hi kingsnorth

Welcome to our merry band. I am 67 this year and have had PBC diagnosed since 2004. It is good that you are on URSO as this will give you a better outcome. Once we are on URSO it is believed that we have the same potential future as the general population. When I was first diagnosed I was also floored but one of the best things I read is that you are more likely to die with PBC than because of it. If you have not yet joined the PBC Foundation it is free to do so through the link above where you will find a wealth of information. They also have an app (I have mine on my Samsung through play store but there is also one for iphone users) which has a compendium also full of very helpful information.

I see from your other post that you are worried about not being a responder to URSO, fortunately as of just a little while ago there is an alternative in the guise of Ocaliva which is obeticholicacid (hope I have that spelled right). You will not know this until your next blood tests but do not worry as PBC for most of us is a slow progressing disorder.

There are also a great bunch of people on here who can tell you their story as they experience different problems that come with PBC. It seems that as you are already diagnosed with sjogrens and lupus you already have other autoimmune diseases which is not uncommon with PBC.

If you do any research then use trusted sites (anything with chirrhosis is now old information as there was a name change about 18 months ago) such as the PBC Foundation, I cannot see which country you are in but Canada and the USA also have good sources of information so if you need other websites get back to me and I can send you links.

best wishes

[kingsnorth in reply to butterflyEi]

Thanks butterfly im in the UK Kent. My gastro didnt seem too concerned and said "we will look after you" she did say it was mild but also said slight scaring which worries me. My lfts were mildly raised when first tested ultrasound scan showed fatty liver consultant initially thought it was inflamation of my liver but decided at last minute l should have biopsy which showed no hepatitis but pbc.

[butterflyEi in reply to kingsnorth]

Well that is good news in a way, at least no inflammation or hepatitis. As to the scarring at least it is slight, the liver can function on a very small portion of healthy tissue so it would seem that you have plenty to spare.

It is not uncommon as we get older or if we have a poor diet to have fatty liver but we can do something about that. Have a look at this page - scroll down for PBC & PSC but nearer the top of the page is information on NAFLD non-alcoholic fatty liver disease.

britishlivertrust.org.uk/li...

I have not come across anyone yet in the UK who has been given a stage unlike the USA where many seem to know their stages.

If you can exercise as well it will help keep the liver in better condition. I try to get a walk in each day and if not I get on the static bike and wat ch the TV whilst pedalling.

[kingsnorth in reply to butterflyEi]

I have a healthy diet and dont drink alcohol and never have. Im 5.2 and weigh 8st 4lb so well withim the recommended BMI at 67 l would expect some fat on my liver. I do aqua classes a few times a week lm just unlucky. I asked consultant abt cirrosis and she said no but slight scaring which l thought was cirrosis!

[butterflyEi in reply to kingsnorth]

I would love to do aqua classes but none nearby. seems that you are doing all that you can for yourself. I also thought scaring was cirrhosis but perhaps she was concerned about frightening you (question with a shrug of shoulders :-))

[Bobbiesitzman]

I myself have been recently diagnosed with PBC and also have lupus. I was was diagnosed in the hospital and I will see my liver doctor on the 27th of February hoping for answers. I've learned more from support groups, Facebook and from health unlocked then I'm sure I will at my appointment on the 27th. They did start me on Urso. They did not find any scarring. I was also diagnosed with auto immune hepatitis. It sounds like we have a lot of the same things going on. The only thing I can tell you, is if you have questions ask these ladies these ladies are wonderful. There is lots to learn don't be scared and ask lots of questions. Easier said than done.

[kingsnorth in reply to Bobbiesitzman]

We sounnd like we have a few things in common. Im not in steroids and concerned that l should be as it is to do with immune system. My gastro hasnt suggested any immune suppressants are you on any.

[Bobbiesitzman]

Long story short. I just started taking 60 mg prednisone again 3 weeks ago. I was admitted into the hospital that is when they diagnosed me with the PBC Originally they had me methylprednisolone 1000mg every 6 hours through a IV because my liver levels were so high. 4 years ago I was feed up with my Doctors and I decided I wanted to try the holistic aprouch. I found a natural path after watching the documentary Fat sick and nearly dead. Started tapering off of prednisone, Imuran and all the other medications I was taking at that time. I thought I was doing fine up until I fell and broke 3 ribs and ended up in the hospital 3 weeks ago. I'm hoping not to be on the prednisone much longer.

[kingsnorth in reply to Bobbiesitzman]

Sorry to hear your holistic approach didnt work it is so tempting to try an alternative to conventional meds. Do you have other autoimmune diseases?

[Bobbiesitzman]

It worked great on my lupus. I didn't know I had a liver disease. I have researched holistic approaches for PBC there are not a lot. I have learned that Urso is made from bear bile. They do have an ox bile that is holistic supplement. I have had this crazy itch for 3 years. I treated it holistically. I've only been on the Urso for a couple weeks and haven't noticed a difference in the itch. Do you itch? It's 2 in the morning and all I can do is scratch!!

[kingsnorth in reply to Bobbiesitzman]

Yes I do itch in fact I have been itchy for a few years now on an off a few time I went to the gp and got steroid cream and didn't think anything of it having lupus I was always getting lots of irritating rashes especially when I went swimming or in the sun, now looking back it all fits into place. I didn't have raised lfts then so nobody took any notice, my itching comes and goes and like lots of people with it its worse at night. I managed with my lupus and sjogrens for years and it hasn't really bothered me too much but this pbc diagnosis has scared me and I worry about it on a daily if not hourly basis

[Bobbiesitzman in reply to kingsnorth]

We do get the triple whammy, I am very chosen when buying my clothes or linens. Anything that's gonna be close to my skin. I don't use any chemicals in my laundry or in my bath, or showers and only all natural products on my skin.

[Lucky4 in reply to Bobbiesitzman]

Actually, Urso isn't made from bear bile. If it was, I wouldn't take it due to the cruelty issues. Urso is a synthetic.

Cheers

[gwillistexas in reply to Lucky4]

Maybe you should listen to Dr Robert Gish on ALF Roundtable Discussion. Urso was discovered through bear bile.

[gwillistexas in reply to Lucky4]

So what do you think Urso is made from? Where did it start?

[Lucky4 in reply to gwillistexas]

ncbi.nlm.nih.gov/pmc/articl...

Fortunately there is now synthetic bile as bile extraction from live bears is excrutiating for them and laws are changing which is good news.

[gwillistexas in reply to Lucky4]

That’s great news. I don’t take it but if I did it wouldn’t bother me as long as it worked. When it comes to liver disease we can’t be too pricky about where it is derived from.

[gwillistexas in reply to Lucky4]

***picky...sorry

[JoanCR in reply to Lucky4]

Thank you! I've been trying to find out exactly where Urso is derived since one site said synthetic but most others said naturally derived. I started on it about four months ago and I also couldn't take it if it came from bears. I'm glad there are others out there like me.

[Lucky4 in reply to JoanCR]

I agree. I also won't take hormones from pregnant mares, etc. as there are synthetic alternatives. I think we need to take care of the world's animals. I'd never take "remedies" that are ineffective and are causing rapid extinction. I think that being an informed consumer is important. Thanks for your reply, Joan CR! Nice to meet you.

[JoanCR in reply to Lucky4]

Nice to meet you too! I totally agree. So much of what we consume has unseen but terrible consequences for others or the environment.

[gwillistexas in reply to JoanCR]

I don’t take it because I had a reaction, not because of bears. I take Ocaliva

[Bobbiesitzman]

Thank you. I miss understood.

[Bobbiesitzman]

Chemicals, chemicals, chemicals our poor little livers more and more chemicals no wonder why they're sick!!

[Bobbiesitzman]

google-American Liver Foundation Pacific Coast Roundtable Discussion, scroll down to the you tube link. Dr Gish. It is a synthetic.