Fenofibrate: Has anyone added Fenofibrate to... - PBC Foundation

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Fenofibrate

Susn profile image
Susn
23 Replies

Has anyone added Fenofibrate to Urso regimen? If so, any side effects? Are you feeling better?

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Susn profile image
Susn
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23 Replies
Ktltel profile image
Ktltel

Hello,

I have been begging my hepatologist to start me on fenofibrates for a year. He won't. All I've read are good things.....even that they help with fibrosis and preventing fibrosis. My fibrosis went up a lot in one year....but he doesn't think there is any benefit to trying them. Ugh!

Stella❤

Sandy220 profile image
Sandy220 in reply toKtltel

I have been on fibrates for a year my liver levels returned to normal within a month.No side effects at all.Before I went on them I was told they didn’t think my levels would ever return to normal

LStonelli profile image
LStonelli in reply toSandy220

That’s great news! I have been on it for 2 months and my Alk Phos went down 42 points!

LStonelli profile image
LStonelli in reply toLStonelli

Yes, have been on Ursodiol for 10 years!

Ktltel profile image
Ktltel in reply toSandy220

Hi,

I read that fenofibrates have an interaction with ursodiol. Are you on ursodiol as well?

Stella

Susn profile image
Susn in reply toKtltel

I have been on Urso for 9 years. First few years my numbers were great, then they started climbing and last year they shot up very high and kept climbing. Just started the Fenofibrate. Everything I have read says you should keep taking the Urso. Praying it will help as I have felt much fatigue and bone pain or the last 2 years.

Sun65 profile image
Sun65 in reply toSusn

Hi Susn I was diagnosed a year and a half ago with PBC. Since I have started Urso, my ALP has risen slightly to about 144. Getting bloodwork is very stressful for me. But what I’d like to say is, I wish you the best and I hope adding the Fenofibrate brings down your liver enzyme numbers.

Sandy220 profile image
Sandy220 in reply toKtltel

Yes I am on both

Ktltel profile image
Ktltel in reply toSandy220

Can I ask the name brand you take and what mg do they usually start a person on? Since my Hep. won't start me on it, I'm hoping my general practitioner will. Is there some good published info. I could bring with me? Current info.?

Stella

Sandy220 profile image
Sandy220 in reply toKtltel

I am on fibrate xl 400 mg

SunnyXXOO profile image
SunnyXXOO in reply toKtltel

Hi Stella, it’s Sunny.

Most patients with primary biliary cirrhosis (PBC) are treated with ursodeoxycholic acid (UDCA); however, some do not respond fully. PBC is also associated with dyslipidemia, but a link with vascular risk has not been confirmed.

In this study we compared UDCA monotherapy with fenofibrate plus UDCA in PBC patients with incomplete biochemical response to UDCA monotherapy for ≥ 8 months. Ten patients (57.2±13.3 years old) with PBC and persistent elevations of liver enzymes after treatment with UDCA (600 mg/day) were randomized to continue UDCA (4 patients) or to receive micronized fenofibrate (200 mg/day) plus UDCA (6 patients) for 8 weeks. Significant reductions in total cholesterol, triglycerides and non-high density lipoprotein cholesterol were observed in the combination treatment group. The serum activities of alkaline phosphatase, gamma-glutamyl transpeptidase and alanine aminotranferase also decreased in this group compared with baseline (-32.6%; p=0.012, -44%; p=0.031 and -16.9%; p=0.029, respectively). In contrast, no significant alterations in liver enzymes or lipid profile were observed in patients who continued UDCA monotherapy. The changes in the lipid and enzyme variables differed significantly (p<0.03) between the 2 groups. Fenofibrate was well tolerated.

Conclusions:

The administration of fenofibrate plus UDCA seems to be safe and may improve lipid and liver indices in patients with PBC who do not respond fully to UDCA monotherapy. Whether the improved lipid profile translates into a decreased risk of vascular events remains to be established.

Ktltel profile image
Ktltel in reply toSunnyXXOO

Thank you. ❤

Dotmath profile image
Dotmath in reply toKtltel

I've been on Fenofibrate (160 mg/day) for 3+ years, along with Urso Forte 500 that I'd been taking for 6+ years before. The addition of the Fenofibrate brought my Alk Phos (which had never gotten very high but always hovered above what it should have been) down to normal. A year after I started it, my liver scan showed that my liver had begun healing itself. It has remained stable ever since. I should add that I also eat a very low inflammatory diet (bordering on a Celiac regimen) approved by my doctor, and take several antioxidant/anti-inflammatory supplements.

I never had any side effects from the Feno. My heptologist, Dr. David Assis, is at Yale New Haven Hospital/medical school and is one of the top PBC clinicians/researchers in the US. He was ahead of the pack on adding Fenofibrate to the Urso regimen. He and his group at YNHH would be a good name to drop to your herpetologist.... in a nice way, of course. Dr Assis had all the research rounded up for me so I could be a partner in my own healthcare.

Good luck....

Ktltel profile image
Ktltel in reply toDotmath

Thank you!

Buddy2017 profile image
Buddy2017

I took them for 2 weeks and I developed an itch , I'm usually asymptomatic and really couldn't cope with the feeling of a thousand nits biting me all over , I don't know how people cope with that feeling all the time. My consultant wanted me to try them again but for me the quality of my life is more important . I hope they work for you

Candy12 profile image
Candy12

I take a fibrate in the uk it’s bezafibrate. My numbers returned to normal in the first month and have remained normal. I’ve been taking it about 9 months now. I never had any side real side effects to mention.

I was kept on both medications, as my doctors felt that although I didn’t have a full response to urso it still had its benefits for the pbc.

Looking back i do feel so much better, less fatigue and bone pains have gone , now that could be due to normal bloods or it could be from other reasons I can’t tell. I’am happy to stick with this regime , my doctors have said from my scans and bloods over time , since diagnosis that my disease process is so slow that it’s the best thing for me at this time. Hope this helps a little.

Yes and levels returned to normal within 3 months I was a non responder and now take Urso + fibrates no side effects!

Wocket profile image
Wocket

Yes I have been on them for nearly a year. My blood was checked 6 months ago and my levels have come down some what but not down to normal. I was hoping that the next test would be better. I am also on Urso as it had helped me a lot but they felt I wasn’t a full responder hence the Bezafibrate. I have notice zero side effects but I can’t says I feel any great change other than it might of calmed my itching. My itching did fluctuate even before Bezafibrate. I would rather have it than not as it has helped.

Puddles profile image
Puddles

I have been taking fenofibrate for around 4 years after my liver enzymes started to go up on urso. They returned to normal a few months after starting fenofibrate and have pretty much stayed there ever since. No side effects at all ( I take both fibrates and urso).

Susn profile image
Susn in reply toPuddles

Thank you for the very positive news! Makes me feel quite hopeful.

ColetteSchw profile image
ColetteSchw

Yes, I've been on it for almost two years, now. I haven't had any side effects from it. My Alk P came down to slightly over the normal range.

Katiagreece profile image
Katiagreece

Yes I’m on both. Diagnosed in 2014 but had PBC for many years before that.

On Urso. Added Bezalip 2016 and immediately bloods came back down to normal.

I haven’t looked back and feeling really well again. No side affects. x

rubberglove profile image
rubberglove

Yes I have been taking both for about 7 year now brought blood levels down. I still suffer with itch and really bad fatigue

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