Benzfibrate: The message I just received from... - PBC Foundation

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Benzfibrate

gwillistexas profile image
15 Replies

The message I just received from my hep is this…benzfibrate is being studied with ocaliva. He will let me know when the trial is available. 😊

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gwillistexas
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15 Replies
4pjx__ profile image
4pjx__

Now that's great news! I hope you're able to do that one!

gwillistexas profile image
gwillistexas in reply to 4pjx__

Yes it is. I’ve already been researching it, lol!

Candy12 profile image
Candy12

That’s really good news, fingers crossed 🤞

gwillistexas profile image
gwillistexas in reply to Candy12

Yes ma’am. Thank you!

Gioielli5 profile image
Gioielli5

On Octavia for a year and made no difference at all to my levels. Then went on Bezofibrate and within a month they were down to normal for the first time in 10 years.

gwillistexas profile image
gwillistexas in reply to Gioielli5

I’m sorry to hear that. Within 3 months my Alk went from 247 to 160. It steadily came down and went to 97. It eventually went back to 113 , then the last year it started back up and was 160 last check.

gwillistexas profile image
gwillistexas in reply to Gioielli5

Your experience is very encouraging 😊

Great news!

butterflyEi profile image
butterflyEi

Wonderful. Hope you don't have long to wait.

gwillistexas profile image
gwillistexas in reply to butterflyEi

Me too. Thanks!

liver-bird profile image
liver-bird

Hope it works out for you Gail

gwillistexas profile image
gwillistexas in reply to liver-bird

Yes, I need it to. Thank you.

Eileen-Emily profile image
Eileen-Emily

I have been on Ursodexacholic acid for 18 years my readings didn’t alter much and I experienced my digestion not being able to handle numerous foods. In addition the misery of diahorrea terribly embarrassing. 2 years ago Bezafibrate was added to my medication my diet improved I now have to watch I do not become constipated! Now my liver enzyme readings are normal and I don’t need to see my consultant until a review in 4 years! unless I develop a problem. Good luck I hope it works out for you.

gwillistexas profile image
gwillistexas in reply to Eileen-Emily

That is wonderful to hear. Aside from your levels being good, do you know if it has slowed progression?

gwillistexas profile image
gwillistexas in reply to Eileen-Emily

All my levels are normal including bilirubin. My hep did a lab to try and determine why my Alk Phos was going back up. Result was normal and it isn’t from my liver. 🤷‍♀️