Fenofibrate : Hello I was diagnosed 3 years... - PBC Foundation

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Fenofibrate

Seybeaute profile image
7 Replies

Hello I was diagnosed 3 years ago and my levels have remained somewhat steady but with minimal elevation. I have a few glasses of wine a week maybe 3 with meals .

My alkaline phosphate lévels is what I’m referring to .

My gastrointerologist is now wanting to add fenofibrate to try to bring the levels down in addition to the Urso and high dosage of vitamin D .

Has anyone taken feni fibrate ?

Thanks in advance

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Seybeaute profile image
Seybeaute
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7 Replies
mrspeffer profile image
mrspeffer

Just wondering...could you give up the alcohol for a month or two and see if this makes a difference in your levels ? I've read some thread on that drug that do not sound fun. I know for me, any amount of alcohol made a difference in my LFT's. Be well.

LindaVillanova profile image
LindaVillanova

I haven’t taken them yet but plan to in the summer when a trial is expected to start . I am on urso and OCA, both drugs working but doc thinks it’s worth adding a fibrate to see if we can get liver counts to normal range. It’s not a new drug and I am good to keep working at normal numbers! I also have a drink now and then - doc was fine with that.

gwillistexas profile image
gwillistexas

I don’t know much about fenifibrate but I received a newsletter from Intercept Pharmaceuticals announcing positive results on a study they are doing with bezafibrate & Ocaliva combined. I don’t know how to share it here.

Ottley3 profile image
Ottley3

I am taking tricor along urso and have exoerienced positive results, no side effects.

mattiasw profile image
mattiasw

Urso wasn't enough for me, liver values still bad. Got bizafibrate, 1.5 * 400mg per day. That made all the difference for me. Have had it for 2+ years now, male, almost 60. No side-effects noticed. I am still have Urso. Fibrate is commonly used together with URSO in Japan, you can find 10-15 year old references. But I think I am one of the few in my region.

billhunter profile image
billhunter

I've been on bezafibrate since 2011 as URSO nonresponding. Take both now. LFTs immediately improved. Note that at that time there was nothing recommended other than URSO. But my own research found some success reported so gave it a go. Now at last some 8 years later it is an approved drug for PBC!

Conclusion - do your own research and challenge your consultants. William

PBCRobert profile image
PBCRobertPartner

There is more data on bezafibrates than fenofibrates. The US does not have bezafibrates available. Fenofibrate data is limited and not particularly hepful.

The Q is why: what is to be gained and what is the best way to make that gain.

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