Bezafibrate combined with Urso : Hi all , not... - PBC Foundation

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Bezafibrate combined with Urso

Cody23 profile image
27 Replies

Hi all , not posted for a while but was wondering in anyone been trialled on Bezafibrate alongside Urso to try bring ALP down to near normal range ? It’s not licensed for PBC in Uk but according to Gastro has good evidence of helping ? Iv been on Urso now for 2 yrs but alp still high at 238 and GGT 115 so my consultant recommends I start this to see if it works. Fingers crossed . Hope you are all well x

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Cody23
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27 Replies
TOMOLLIE profile image
TOMOLLIE

Hi there I have been taking this combo for about 10 months. Within the first 8 weeks of taking both tablets, my liver results all normalised. Absolutely amazing!

Cody23 profile image
Cody23 in reply toTOMOLLIE

Thank you for your positive feedback . I’m due to start this medication today so fingers crossed x

Ktltel profile image
Ktltel in reply toTOMOLLIE

That is a really good outcome. I truly hope it continues. Unfortunately it doesn't happen for everyone though. Do you have fibroscans regularly? Some who have tried or are taking fibrates and have experienced lower liver lab results, are still showing slow progression of their PBC. It's picked up on their fibroscan results. I was told by old timer PBCers a few years ago that a person with PBC can present with next to normal liver lab results and still be in Cirrhosis stage as she was. My question is, do fibrates just mask liver lab results while our progression continues? In her case apparently it did. Or, maybe if you catch PBC early enough fibrates actually do turn things around. That would be wonderful. I'm late stage 3 fibrosis. Diagnosed in Oct. 2016. supposedly early stage PBC. But, I think that biopsy in 2016 didn't tell the entire picture. A fibroscan or an MRE gives a more accurate representation of what's taking place in your liver fibrosis wise. My hep doesn't want to put me on fibrates. 🤷🏻‍♀️ I'm gonna ask again in December. I'm so happy for you!

Stella❤

SuziS profile image
SuziS

Yes I’m on it here in the U.K. at the moment. I can’t take Urso it doesn’t agree with me, ditto for Ocaliva. So far it seems to be ok with me; no bloating or itching. Only weird thing is I’m getting greasy skin! Just done first blood test and yet to hear if it’s making a difference. Fingers crossed.

Cody23 profile image
Cody23 in reply toSuziS

Thank you so much for your positive feedback . Due to start this medication this week so I’m hoping it works 🙏x

Gioielli5 profile image
Gioielli5

Hi, I have been on this combination for almost three years. My levels had come down to the 200s but were not shifting. Within 2 months of using Bezofibrate they were back in range - dropping to 80 at my last blood test. Absolutely amazed at the results.

Cody23 profile image
Cody23 in reply toGioielli5

Glad you are doing well and thank you for your positive feedback x

Candy12 profile image
Candy12

I’d been on Urso since 2009, and never had normal bloods the ALP always fluctuated between 180/250 luckily it was more often in that lower range.

About 3 years ago my ALP started to rise slowly to 268 when I discussed it with consultant, we decided to try Urso and Bezafibrate and within weeks my ALP ( and all other tests) were normal and have been ever since. 😊

Cody23 profile image
Cody23 in reply toCandy12

Thank you . Due to start this week so fingers crossed x

mattiasw profile image
mattiasw

Got the combo urso+beza, liver values to back to normal values and improving year by year. Used the combo för 5-7 years now.

Cody23 profile image
Cody23 in reply tomattiasw

Thank you and hope you are keeping well x

kimphoebe profile image
kimphoebe

Yes I started this over a year ago and bloods are completely normal, so fingers crossed for you x

Cody23 profile image
Cody23

Thank you so much . Fingers crossed it works 🙏x

Sandpiperx profile image
Sandpiperx

Same here since. The Urso did nothing for me but since adding in Bezafibrate my results are normal.

Sallam profile image
Sallam

Hello Cody23. Yes I have been on Urso and Bizafibrate for 5yrs.It worked for me (thank god). As I was a non responder to Urso alone!

Hope this helps.

Regards.

LaoUK profile image
LaoUK

Hi Cody, I was diagnosed with PBC in Dec 2019, on February 2021 my ALP was 300 and started taking bezafibrate with my urso and in May my ALP went down to 220 and in June it was 156. So guess it has it's benefit. Wish you well.

PBain profile image
PBain

Hi, I have been on ursodeoxycholic for 12 years and a year ago stopped responding . Now on both for 10 months. Not had bloods done for a while but numbers were down last time. I hope it also works for you . Take care x

Feelthelove profile image
Feelthelove

I have just started the combo too been on a couple of weeks and already has made a difference. Great to hear all of the positive results 👍

510amr profile image
510amr

I'm taking fenofibrate in the United States. It's amazing. My numbers went from 265 to 70 (low normal) in a month! They've stayed normal now for two years

Cody23 profile image
Cody23 in reply to510amr

Aww so glad to hear that . Fingers crossed it works for me too x

Boosh profile image
Boosh

Yes I have been for over a couple of years but they are now looking to add a third medication so I guess it’s not working as well as they hoped….

Wocket profile image
Wocket

I take Bezafibrate and Urso and my results are now in the normal bracket

gwillistexas profile image
gwillistexas

Good Morning. My hepatologist has considered putting me in a bezafibrate trial. I saw him the end of August and my ALP had dropped back to 128. Fibroscan score dropped from 12 last August to 8.5 now. I only take ocaliva. He said he’s very disappointed in Intercept Pharmaceuticals because they have turned their main focus towards NASH and not PBC as it once was. He will be in charge of whichever trial he decides is best for me. Good luck.

zinchunter profile image
zinchunter

On it for 10 years. LFTs elevated a bit but stable. Best of luck. W

Melani1 profile image
Melani1

Hi Cody23, I started the fibrate for exactly the same reason as you. But had to be taken off it after 2 months. Caused me quite a large weight loss & adverse effect on my liver

Pat_H profile image
Pat_H

Yes, I've been on Bezafibrate for at least two years and it's brought my ALP numbers down to the normal range.

Northwindwoman profile image
Northwindwoman

hi Cody, my dr. just recently put me on bezafibrate along with the Urso i have already been taking for a few years now. I know you have posted this 2 years ago. Im wonder if it worked to bring your ALP numbers down to normal? hope to hear back from you soon

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