Hi can anyone help me , I was diagnosed with Pbc in 2012 and have been on urso since then , but my alt and my ALK phos remains high . I was referred to Addenbrooks and was told they were going to try a 2nd line Treatment. When it went to the MDT board they looked at my scans and now think I have a PSC overlap .I’ve tried googling psc but it looks the same as Pbc ,can anyone help
Regards Trish
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Kieraferret
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My understanding is that PSC is an auto immune disease of the larger bile ducts whereas PBC is an auto immune disease of the small bile ducts. There is a group on Facebook for PSC (facebook.com/groups/psc.sup...pscsupport.org.uk/ Quite some time ago I me a woman called Martina who was activey involved in a support group which may be the group that I have given you the link for.
You might like to speak to the PBC Foundation's help line as well as they have an amazing amount of knowledge or access to specialists who may be able to help you
Have your physician look into Ocaliva, I've been on it since the FDA approved it. My ALK PH is now within normal limits. I also take Ursidol, Azathioprine, and Cholestyramine.
And definitely ask your physician about fenofibrate (bezofibrate in UK?). It's inexpensive and has been a miracle drug for me--29 years with PBC and ursodiol and all labs only went to normal after adding fenofibrate two years ago,
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