PBC Foundation

Hello I am brand new to the group, and sure am glad to have found you!

Hi everyone,

I am brand new to this site and I have enjoyed ready everyone's comments. It sure helps to know there are other people on the same journey and I was diagnosed with PBC, NASH, auto-immune hepatitis, granulomas and sarcoidosis in my liver in 2002. The diagnosis was made through LFTs, positive AMA, and a liver biopsy. So I am sure my doctor is spot on.

I had a severe intolerant reaction to Urso so I went untreated for five years (perhaps longer as I had a pos. AMA when had a bout of debilitating joint pain 15 years ago. I am now 56 and have been started on Ocaliva.

My primary care doctor really has no clue about PBC, however I have a good gastro doc. who is learning more and more each day.

I have been reading in a lot of posts the importance of "nutritional therapy" and I was wondering if some one could guide me on what to eat or not to eat to benefit the liver. Of course I don't drink alcohol. I eat mostly vegetarian, with some eggs and a little cheese. I take a lot of various vitamins because I am a bariatric bypass patient that lost 100+ lbs to take any additional stress off the liver, I am looking for any suggestions on liver specific healthier nutrition. It is looking like I may be a non-responder to Ocaliva, so diet, rest, and excursive might be my best chance at living as healthy as I can as long as I can. Oh and I forgot to mention that steroids are not an option for me due to rapid loss of bone.

Thank you everyone for being here to support each other. Because PBC is classified as a rare disease, much of what we gather here goes back as data for our doctors so they can learn how to help us.

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Hi Q8Cooper

Welcome to the group, there is a good bunch of souls on here and I am sure someone much more knowledgeable will come along shortly but I would suggest that you have already taken your diet to a healthy level. I take it that you also eat fruit, pulses and beans but can I add a favourite of mine which is a soup - ribollita - the ingredients of which can be swapped about to ring the changes. I have recently cooked this which I thoroughly enjoyed:-

bbcgoodfood.com/recipes/189...

:-)

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I saw some wherever they are running trials on another drug for PBC. This one seems to work and people shouldn't have the itch they were getting from the Ocaliva. There might be a possibility for you with that at sometime in the future. There's a PBC Facebook page and I think that's where I heard about it. It sounds like you take excellent care of yourself. If you can't take the medicine I suppose that's the best you can do. Some people take baths in Epsom salts once a week in addition to their self care program. I started this last week . I don't know if it did any good but seems to be harmless so I think I'll continue that one for a while.

Also, make sure you have some fun every single day!

Best wishes

Pam

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