Ocaliva

[AC025]

I was diagnosed with stage 1 PBC in 2016. Initially responded to Urso but it did stop being effective. I had another liver biopsy this past November and currently at stage 2 PBC. I am now on Ocaliva. I did not want to take this drug prefer a safer drug that has been around longer. Anyone else on Ocaliva that can share their experience? Positive results? Side effects you encountered?

[JaneEyre55]

I am taking BOTH of the medications you mentioned. I am 65 years old, diagnosed about 10 years ago and currently at stage 4. I have had no side effects from either medication. My liver enzymes are within normal range and my alk. ph. is inching down to normal levels thanks to the Ocaliva. I am also taking Cholestyramine and Azathioprine.

[AC025 in reply to JaneEyre55]

Thank you for the reply super appreciate it

[brjl in reply to JaneEyre55]

I have been diagnosed since 2012 and on Urso since than. In 2017 my liver enzymes went way up. I was eventually put on a Fenofibrate. My numbers have been closer to normal since with no side effects. I also continue to take the Urso.

[Camp_Host in reply to JaneEyre55]

I just started my first dose today of Ocaliva. Doc started me on lowest dose 5mg, one pill per week. A bit nervous but really needed to try it as my bilirubin has shot up and I have yellowing eyes and skin and spleen has doubled in size, along with developing esophageal varies without bleeding—thank goodness (7 binded in total)—all of this happening within the last 6 months! My spleen has always been enlarged but the doubling in size has made it worse. Prior to this I was taking 1200mg urso, living an ok life (still itchy and tired) but my skin and eyes were good. It seems everything is falling apart. Plan of attack is labs each week to see how I respond to it. I am hoping it’s not too late to get some of my labs better (and get rid of the jaundice which bothers me more than anything). Anyway my question is how much were you originally taking and how long did it take to get your numbers down? I am also continuing to take the urso as directed by my doctor. Any advice or sharing your own experiences is greatly appreciated!

[OdinsMom]

I’ve been taking Ocaliva about 2 years now without any side effects and it’s keeping my numbers down. I cannot take urso and drs don’t favor ocaliva but to their surprise I never got the itch

[AC025 in reply to OdinsMom]

Thank you!

[-JDN-]

I was also diagnosed in 2016. I take Urso and Fenofibrate. Tried the Ocaliva. Itching was severe while on it and my AST, ALT, Billirubin and Alk Phos got worse while I was on it. I hope you have a better experience than I did. Good luck!

[AC025 in reply to -JDN-]

Thank you!

[Purply]

I’ve been on Ocaliva over a year and I am doing okay with it and haven’t had any side effects. I am also taking Ursodiol. I was dx with PBC 3 yrs ago. I wish you good luck.

[AC025 in reply to Purply]

Thank you and I wish you the same!

[tiscse]

I was diagnosed in 2012 (stage 2) and started ursodil (1500 mg) then. In 2017 or 18 I started Ocaliva (5mg now 10mg). I take both Ocaliva and Ursodil. I have no side effects from them. They added Ocaliva because my levels were not down enough. They are down more but still not where they want them.

[OdinsMom]

I’ve been on it almost 2 yrs. No side effects at all. Numbers are holding steady