Obeticholic acid

[Marj6364]

Hi everyone I was diagnosed around 5 years ago. Unfortunately I am not fully responding to first line treatment Urso. The Dr's are suggesting that I should start on Obeticholic Acid. I'm a little apprehensive due to the side effects listed. Is there anyone here who could advise please? Tia 😊

[Lindz1]

Hi I've been taking this for last few years and not had any side effects so far, my consultant did say some of his other patients didn't tolerate it but I've been ok and test results did improve.

[SuziS]

I also couldn’t tolerate Urso and I was put on to Obeticholic Acid. However it made me really itchy especially at night. Good news is they then put me on to Bezafibrate (more popular to use in France). Bingo! No side effects and within 3 months stats are almost in normal range…. first time in 10 years of having PBC. Big win.

[Wocket]

I was put on Bezafibrate which put me in the normal range but sadly it damaged my kidneys. I’m seeing my Dr in a couple of days and I’m going to ask for obeticholic acid.

[Floridachick]

I was diagnosed 8 years ago, went on Ursodiol 500mg 2 x day. LFT’s continued to go up . 3 years ago I was put on Ocaliva 5mg in addition to Urso - my numbers have come down to almost normal and no major side effects.

[123456abc in reply to Floridachick]

Hi Floridachick, I have been on Urso 500 mg x2 for over 10 years and on Urso for 17 years. My levels are climbing again and they what to add Ocaliva. I am really concerned about what I read about the medication. Would you be open to sharing what your levels were are when you made the decision to add Ocaliva?

[Marj6364 in reply to 123456abc]

Hi there, I'd be happy to share but tbh I don't really know. Consultant just said that he's not happy as they have gone down but they are not going down enough. He said the benefits outway the risk so all I can do is try I guess. Will keep you updated. Take care🙂

[LindaVillanova]

I added OCA a few years ago and no side effects, numbers went down but started a slow climb again. Added bezafibrate a few months ago (every other day) and numbers lowered a bit, but definitely not normal at this point. Still monitoring and may take every day. I haven’t had side effects with any meds to date. It’s a challenge but I know there are more options out there. Best of luck to you!

[Maya535]

Hi Marj

I was diagnosed in 2019 with very high numbers. I had trouble tolerating Urso but persisted the Urso did not bring my numbers down enough so they put me on Ocaliva. I had an extremely bad reaction after 3 days.

My stages were progressing and prognosis wasn’t good .

Last year they tried Bezafibrate and it definitely lowered my numbers but the side effects were harsh. 6 months later they tried Fenofibrate which really brought my numbers down . I seem to have issues with every drug but the combination of Urso and Fenofibrate and s really working for me so much so that my prognosis has greatly improved.

Might be worth trying the fibrate Urso combination first . Good luck 🤗

[funkyfreester]

Hi,I have been on Obeticholic acid along with Urso for several years now and have not have not had any adverse side effects.

Good Luck!

[Marj6364]

Thanks for all your replies, I feel a lot easier about it now. My appointment came through today to see consultant early December so hopefully I will tolerate it and my numbers will go down🤞Take care everyone 😘

[Fifibee11]

Hi there. I've been on it for a number of years 10mg daily. I've not had any side effects from it. My results have improved.

[Rozzie52]

I am also partial responder to ursodeoxycholic and I have been Octilva for about two years now , it’s the best thing that happened to me , my liver enzymes are almost back to semi normal and I feel so much better and have so much more energy.

Like you I was a bit hesitant about Octilva but so far so good

Take care

[Marj6364 in reply to Rozzie52]

Thank you so much, so glad to hear its workingfor you. Fingers crossed it works as well for me.

[gwillistexas]

I’ve been on ocaliva 5 years with no side effects.

[gwillistexas]

Well, I will say that when I started ocaliva, I started slowly losing weight. I finally stabilized but I’ll never be back to my original weight.