Fenofibrate : Hi everyone, Some of you may... - PBC Foundation

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Fenofibrate

Puddles profile image
18 Replies

Hi everyone,

Some of you may remember I was asking last year if anyone had been prescribed fenofibrate to manage their PBC. At the time after about 18 months of appearing to respond to urso, my liver function tests became quite elevated over a short period of time. After several repeats of blood tests and a biopsy to rule out any other pathology (AIH in particular) my Hepatologist suggested in the absence of any other approved drug trying fenofibrate. At the time there were only a handful of people on this board who had taken fenofibrate.

Well having been taking this drug for around 10 months now I am happy to report that my LFTs have gradually decreased and last results showed all within normal limits except AST which is only marginally elevated. Huge improvement, no side effects and generally feeling really well :-)

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Puddles
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18 Replies
butterflyEi profile image
butterflyEi

Hi Puddles

Lovely to read your post. Keep well.

AdeleMalcolm profile image
AdeleMalcolm

Hi Puddles. That's very interesting. I've done the usual internet thing and from what I can see fenofibrate is primarily used in treating cholesterol. I'm due to see my specialist in October so will take a note to ask about this - I'm just on Urso a few months now so I guess it'll take a bit more time to determine its efficacy for me. Here's to continued good news!

Puddles profile image
Puddles in reply toAdeleMalcolm

Hi AdeleMalcolm, yes fenofibrate is mainly used to lower cholesterol but it was also found to have an anti-inflammatory effect on the liver and some small studies showed improvement in LFTs in PBC. In the absence of any other medication currently approved in Australia my Dr decided to try this when it appeared Urso was no longer working as well.

Review of existing studies at link below:-

ncbi.nlm.nih.gov/pubmed/258...

Good luck with your review in October, I hope you have responded well to Urso and all is well.

Puddles

AdeleMalcolm profile image
AdeleMalcolm in reply toPuddles

Thanks Puddles. It's always useful to hear what solutions are out there. I'll definitely be taking note in case I don't respond to Urso.

Take care. Regards. Adele

Gilz1702 profile image
Gilz1702

Interesting to hear there is more medication out there other than urso. I'm now wondering if I should be on something different. I've been diagnosed for 10 years and it took my consultant 2 years to put me on urso. I have no symptoms, it was elevated lfts in my pregnancy that PBC was diagnosed. Anyway my alkaline phosphate has never been below 300 in all these years!

😏

Margaret_C profile image
Margaret_C in reply toGilz1702

I had a terrible time with the fenofibrate, but the milk thistle works great at lowering alkaline phosphatase ... inching below 200 for the first time in 1 1/2 years.

Puddles profile image
Puddles in reply toGilz1702

Hi Gilz1702,

There is Obeticholic Acid as well which will hopefully get approval in more countries in the near future. It is not yet available in Australia, so I have been very fortunate in that my Dr had another option to try. I thought it was worth sharing my experience since I had not come across using fenofibrate for PBC until it was suggested by my Dr.

Good news you have no symptoms though even after 10 years!

All the best

Puddles :-)

mattiasw profile image
mattiasw

Thank you for the interesting link of bezafibrate vs fenofibrate: ncbi.nlm.nih.gov/pubmed/245...

I need to ask my doctor if we should switch, although bezafibrate have been very good for me.

I got bezafibrate late last year. 2 years of Urso didn't lower my Alkaline phosphatase (ALP), value, which was 2.5 - 3 times too high. All the other values were resonable ok. After a few month with bezafibrate, ALP was down to normal, within the range but at the top. And it has stayed there, doing tests every 2nd month. The only values that now are slightly outside the recommended range is P--ASAT and P--Glutamyltransferas.

Puddles profile image
Puddles in reply tomattiasw

Hi Mattiasw, that is a different link to the one I was trying to post which was a study titled "Fenofibrate is effective adjunctive therapy in the treatment of primary biliary cirrhosis: A meta-analysis."

Your link takes me to another study I hadn't seen - as you mentioned comparing fenofibrate and bezafibrate.

I think both have been shown to be quite effective in PBC and if your LFTs have improved that is great news! There is a big multicentre trial due to finish later this year looking at bezafibrate in addition to Urso, it will be interesting to see the final results!

clinicaltrials.gov/ct2/show...

Fibrates seem to be rarely considered - but to have quite positive results in the few of us who have used them - worth sharing our experiences so others for whom Urso is no longer having the desired response are aware.

All the best

Puddles

Margaret_C profile image
Margaret_C

Interesting, I have been taking urso for a year with no response, ALP stuck around 300, when it should be 50-130. Gastro suggested the fenofibrate 200 mg, which made me so sick I couldn't believe it. Have made 3 attempts to tolerate it, but the side effects are awful. Have had much luck, though, with milk thistle, but you have to take a lot. The ALP is droppeing slowly , at last count was down to 200.

Puddles profile image
Puddles in reply toMargaret_C

Hi Margaret_C

Sorry to hear you had such bad side effects with fenofibrate, but good news that ALP is coming down with the milk thistle.

Lcagar63 profile image
Lcagar63

great to hear you are feeling well. Long may it last.

Nicole786 profile image
Nicole786

Wonderful news!

Becca75 profile image
Becca75

wow that's great to hear !!! :)

Pamela4475 profile image
Pamela4475

Can I take it at the same time as my urso?

Puddles profile image
Puddles in reply toPamela4475

I still take urso and the fenofibrate was added.

Pamela4475 profile image
Pamela4475

Do you take together or different times?

Puddles profile image
Puddles

I take them together, havent been told otherwise :-)

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