Yeah the hepatologist said ok to trial it in the beginning but I stopped it because I was having a lot of medication reactions (I also have MCAS) and now he is hesitant to have me start it again. I’m working on making a case for restarting for when I see him next but having those additional tests was part of it.

@A myPBCteam Member are you in urso? I heard one of the experts on the pbc foundation Q and A talk about some situations where people are ama + no symptoms enzymes ok but with history in family taking urso as it won’t harm and could help!

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A myPBCte...

Yes this is the exact reason I was asking. In my line of work risk stratification shows how aggressive to treat the disease or what different treatment strategies you need to employ to be as effective as possible. I know what my genetic makeup says (I have significant fibrosis genes and my mom, who does not have PBC, was just diagnosed with Cirrhosis). I don’t have symptoms right now but I am watching liver specific tests (not the liver enzymes) show that something is going on in my liver and I want to be as aggressive as I can to reduce progression (I am AMA+). I had asked about these additional tests to get ahead of my liver enzymes from rising… just trying to be as proactive as I can.

@A myPBCteam Member I was just looking into it a bit further right now - I think there is more out there corroborates for risk stratification - have a look! But you are right if you are paying why not let you have the test?

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A myPBCte...

@A myPBCteam Member did you see this?

https://pubmed.ncbi.nlm.nih.gov/36610465/

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A myPBCte...