pbc and Benzofibrate: Have pbc over a year... - PBC Foundation

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pbc and Benzofibrate

Saints1976 profile image
11 Replies

Have pbc over a year and on 1250 mg of urso my levels have not come down enough so hepatologist wants to add benzofibrate . Anyone on this and had good results? TIA

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Saints1976 profile image
Saints1976
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11 Replies
TOMOLLIE profile image
TOMOLLIE

Hi I was on 1000mg of urso initially but became non redponder after 4 years. I read about Bezefibrate and asked Consultant and he agreed to add this to my Urso prescription. Literally brought all my levels to normal in 5 weeks- I could not believe it! Has stayed normal level now for last two years or so. I would definitely ask your Heptologist about it. Good Luck x

Ksmf profile image
Ksmf

I was started on one of the fibrates - fenofibrate -after a year on urso. Urso helped my ALP down to130. High end normal range of ALP in my lab is 125. MY hep doesn’t accept anything above normal range, so he started me on the smallest dose of fenofibrate 48 mg. My next ALP 3 mos later was 100. The rest of my bloodwork was excellent as well. My hep used the term “cessation of progression” when discussing where I am at at the moment. I was diagnosed 2020. I have not had any noted side effects. Hope this helps.

SuziS profile image
SuziS in reply to Ksmf

I was an Urso non responder. Bezafibrate has brought my levels down significantly. No side effects. Just as a tip, if anyone can’t swallow tablets easily then take with a smoothie it kind of suspends the tablet in your mouth and you swallow so much easier.

Abby_green profile image
Abby_green

I'm taking both, never had normal results. Soon I'll be starting ocaliva, maybe that would help. Pay attention to fibrates side effects. I suffered from terrible headaches, muscle pain and others. Most of them passed after time (long time...)

Candy12 profile image
Candy12

I take bezafibrate and have normal ALP since starting it , must be nearly 4 years . However I would discuss it’ with your consultant and ask why he recommends it for you so can make an informed choice.

Cody23 profile image
Cody23

Hiya , I was diagnosed in 2019 and commenced on 1000mg Urso . Levels were still high and commenced on 1250 mgs Urso . Levels came down but plateaud . Was then started ln bezafibrate and all blood levels came back into normal range . Not had any side effects from it . Good luck xx

Wocket profile image
Wocket

I was put on bezafibrate because I’m only a partial responder to Urso. It reduced my numbers to normal so I was very happy but after a while my kidneys were affected. My gp didn’t put 2 and 2 together and put it down to my age (59) When they finally told me that I had chronic kidney disease I remembered reading that bezafibrate could cause kidney problems in David Jones PBC book. I then asked him on a question and answer in the PBC Foundation charity and was advised to stop them with immediate effect. The moral of this story is don’t just rely on the doctors ask them for kidney checks and stand up for yourself because if I hadn’t I would be still on the drug with my kidneys getting worse each month.

Belgium22 profile image
Belgium22

I am on bezo plus 900 mg urso. Helps.My bloods are in normal range. No side effects.

billhunter profile image
billhunter

Worked for me too. Not normal results but stable. Give it a go!

Pat_H profile image
Pat_H

Yes, although I was on1000mg of Urso for several years, my ALP figures, which started off at just under 900, dropped to around the 350 level and stayed there. I was put on Bezefibrate and within weeks my ALP figures dropped down into the normal range and, best of all, my itching stopped. It's stayed that way ever since, which is several years now. Best wishes,

510amr profile image
510amr

I never had normal ALP, ALT numbers while only taking ursodiol. Within a month after adding fenofibrate all my labs were in the low normal range. I haven't had any side effects.

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