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Is Anyone Taking Ocaliva Along With Ursodiol? My Current Gastroenterologist Wants Me To Add This As My ALP Is Rising Slightly.

A myPBCteam Member asked a question 💭
Sarasota, FL

I was diagnosed in 2003 and have been stable at stage 1-2 since then. My ALT and AST are slightly elevated but stable. My ALP is what Dr. is worried about even though it is 167. I take 900 mg per day of Ursodiol. I am worried about adding another medication with unknown side affects and efficacy. I have no real symptoms right now other than some fatigue and occasional mild itching. My last test showed little to no liver scarring/damage
Thank you all in advance for any information you can… read more

April 6 (edited)
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A myPBCteam Member

I’m not a doctor but I think I would get another opinion. I was at the same point you are now and started on Ursodiol right away. From what I read about others it seems this is the main protocol. And I tend to believe it is what has kept most of us long term people from disease progression or at least slowing disease progression. Good luck Tamra!

April 8
A myPBCteam Member

Hi Diane! Did you go on the Ocaliva and is it helping?

October 13
A myPBCteam Member

Hey! My doc wants me on Ocaliva and I would like to know your experience with that. I heard it could be more detrimental in the long run. Is that true?

October 13
A myPBCteam Member

I have been on Urso since my diagnosis in 2008 as well as Ocaliva. I participated in the final clinical trials for Ocaliva and it has helped to keep me symptom free (along with the Urso) until just recently. After all these years my ALP is now very high but all other test indicators are in normal range (including my fibroscan).....my doc has set an MRI but could be vitamin D deficiency. Will know more in a week or so. Bottom line......Ocaliva and Urso have been awesome for me for years.

April 29
A myPBCteam Member

I was only diagnosed in December of 23, but would certainly get another opinion about meds. I was put on orso that day I was diagnosed.

April 16

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