Hey folks, has anyone had experience with the drug Fenofibrate?

To back up a bit, I have been on what I call a “tour de speculative PSC drugs” over the last 2 ½ years to try and get my alkaline phosphatase down. It has been elevated and increasing since about 2010, and peaked at 500 early this year. I tried URSO and then oral Vancomycin, neither of which had an effect. I started Fenofibrate in March and have had four rounds of labs since, with steadily decreasing levels - the latest being 256.

Now I am far from concluding (or even allowing myself to hope) that my Alk. Phos. levels will go or stay lower and, there is probably not any data out there showing enzymes reduced as a result of Fenofibrate will improve my outcome. That said, the big reduction in my Alk. Phos. level so far is definitely better than a sharp stick in the eye.

As I understand, Fenofibrate is a peroxisome proliferator-activated receptor alpha (PPARα) agonist. Did that help anyone?? Didn’t think so. I have not been able to make much sense of it, and I’m a dang scientist. If you want to get into the theoretical jungle, try this article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515188/. I will be glad to explain it to you in a few years after I receive a degree in cellular biology and another in genetics.

So, circling back…does anyone have any input or want to share their experiences with Fenofibrate (good, bad or otherwise)? Could it be one of those drugs that has potential and should be investigated further? I do know that this drug has been used for decades to lower cholesterol so the side effects are well documented and, apparently, are mild if any for most people.

Take care. Be well.

I have never heard about this drug. I am curious, how did you decide to try this?

Hi jace0221. That is my sense too, that there does not seem to be a lot of information out there and even less specific to PSC. My liver specialist at Emory here in Atlanta suggested Fenofibrate along with a few other options. I understand that over a long period of using this drug to treat high cholesterol, someone noticed that it also seemed to lower enzymes in some patients. The following paper has a short section (do a search on PSC).



2 days ago i had my fibro scan consultation i was worried From having liver scarring but thanks god my liver has no scarring at all .

Thanks. My 22 y/o son was diagnosed 1 year ago with PSC and Crohns, but has been asymptomatic for both. Recent liver biopsy showed mild impact on the liver. I have been trying to get our heptologist to prescribe Vanco (which he was open to doing at our 1st visit), but now he keeps saying that all it has been shown to do is lower enzyme levels but has no impact on disease progression. He says the hospital he is associated with (one of the big NYC hospitals) will be conducting a clinical trial on a drug for PSC, but I haven’t been able to get any information.Its frustrating and I have no ability to just sit and wait for things to get worse.

Most likely, my guess, is that you have high cholesterol, which is common in PSC patients.
That abstract you cited, is a meeting presentation. If there is no subsequent peer-reviewed publication, these ‘scientific findings’ should just be ignored.

DHZ, my cholesterol is not/has not been elevated.

As for the links I provided, that is right, the second link I provided is just a summary, not a paper. The link in my first message is from the journal of Hepatology, which I understand is peer reviewed. However, I did not mean to suggest that any of this establishes that fenofibrate is an effective treatment for PSC. That’s the frustrating thing about PSC. There is no proven effective treatment. The best that can be said is that there are some possible effective drugs that are being investigated. Adding to the frustration is the painstakingly slow (but necessary) process to evaluate potential treatments. So what am I to do in the meantime while the science gets worked out? My enzymes have been elevated for years, but fortunately thus far I live a normal life with no serious complications. But very likely, at some point, I won’t be fine. What am I supposed to do in the meantime? Just hope that before the point where my liver takes a dive, the FDA-approved treatment will show up? I can’t do that. I am taking the best care of myself that I can (diet, exercise etc.), but also, as described in my post above, I have been trying a few drugs knowing that they are not proven (fenofibrate is the latest). I am fortunate to have a hepatologist willing to work with me. Lower enzyme levels in response to taking drug “X” is good, right? I will answer that question with a resounding “who the hell knows.” I don’t.

My experience with Fenofibrate started late 2014. My hepatologist suggested pairing it with Urso since in the PBC population it showed promising effects of reducing Alk Phosphatase. The first version I tried reduced my ALP from over 250 to normal range in one month. I was still taking 500mg Urso twice daily at the time. My GGT went from over 850 to roughly half but was still well above normal.

The one major side effect was muscle cramping in my legs which my pharmacist said was reason enough to discontinue taking the Fenofibrate. After meeting my hepatologist a month later, we reviewed my blood work results and she noted that the ALP had returned to the previous high range so I was back on Urso only at that time.

In March of 2015, we tried a new trial of Fenofibrate [different brand and dosage] and that didn’t have the same undesireable side effects as the first round. I’ve been on it since and my ALP has been in the normal range ever since. My GGT continues to be elevated and seems to be creeping upwards slowly so I’m not sure what to make of that.


Greetings PSCers! I started this thread on Fenofibrate over two years ago. Time for an update on my experience with this drug. My ALP results continue to slowly decrease and it is now at 150 (it was 500 before I started Fenofibrate and I have been on it since March 2017). Everything else is the same: no apparent drug side effects and no PSC progression (just had MRI: continues to be “mild” impacts unchanged from previous MRIs). What I continue to not be able to say is that using Fenofibrate will change the outcome of this disease - that sort of evidence can only be generated through clinical trials, studies etc.



Appreciate you for sharing your experience about Fenofibrate. I never heard of this one before for PSC and am glad its helping to reduce your ALP numbers.

Can you share any other details before you tried this medicine? Apart from ALP elevation, were any other markers elevated for you? And if Fenofibrate helped reduce them? You mentioned no side effects for you but literature shows some kidney toxicity which is interesting. Are you taking this medicine at night and once a day?

My 6 year old son is having sub-optimal response to both urso and oral vancomycin. His ALT/AST/ALP/GGT all of them are elevated but bilirubin, albumin are under control. Hemoglobin is low even after taking 250mg/day iron supplements along with vitamin C for several months.

Our doctor wants to add another medication (didn’t specify the name yet) but wanted to consult with Dr.Cox first to make sure he is on-board with the plan. I am not sure if that could be Fenofibrate or something and will be interesting to know next week.


We are glad to hear that you are doing so well with Fenofibrate. Quality of life is such an important part of managing PSC. In time we certainly hope that a cure for PSC will be found. I’m glad this treatment has helped you and I trust it will continue to do so. Keep us posted on your continued progress.

Kind Regards,


Mark Wilson, Moderator

Hi Sr 13, sorry for the delayed response (I took a week off to go backpacking). As you asked, here is a bit more on my situation. My ALT, AST & ALP levels seem to march in unison, with ALP having been the greatest percentage above normal. I have never had elevated bilirubin, or albumin levels out of the normal range. I was diagnosed in about 2011 at Emory Hospital in Atlanta, and I went for a second opinion some years later at the Mayo Clinic in Rochester. Both hospitals concluded that it was PSC based on enzymes and the “beading” of the biliary tubes. I tried both URSO & Vancomycin &, like your son, had a sub-optimal response as determined by lab work for enzymes. After starting fenofibrate my ALT, AST & ALP levels all dropped quickly at first and then more slowly, and appear to be approaching the normal range. I do labs every 2-3 months for enzymes as well as kidney function & there have not been problems with my kidneys. I take it once per day in the morning. I know two other adult men on fenofibrate & their enzymes are lower as well. I have never read or heard anything about fenofibrate & children (I am 53 yo).

Good luck as you work with your doctor to find the approach that works best for your son. I will continue to keep people posted on how I am doing, be it good or bad, and will probably do so about once per year unless something changes that folks may be interested in. I am happy to answer any more questions about my experience.


Hi David,

Thanks for sharing your information in more detail and it shows PSC can be so different among patients with varied symptoms and progression. Am I correct that you are currently using fenofibrate alone for PSC and have stopped taking urso and oral vancomycin?

It is definitely interesting to read some of the articles you posted earlier. I will bring this up with our doctor when we talk to her next time.

Yes that is right …I am only on the fenofibrate
& not URSO or oral vanco. I had previously tried URSO & vanco separately but discontinued each because the enzyme levels did not decrease.
My enzymes only decreased after starting fenofibrate. I try to be careful when talking about this since, as you say, everyone’s case is different. In my case, the symptoms of PSC have thus far been mild. Would they have continued to be mild had I not started fenofibrate? I don’t know … there are people with PSC that never develop bad symptoms. It may also be the case that PSC will get worse despite being on fenofibrate and having low enzyme levels. As Mark said above, hopefully some more definitive treatment options will be forthcoming.


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I hadn’t heard of fenofibrate when I was with my PSC only the URSO. I’m glad it is helping you. Whether it is permanent help or not, any amount of quality of life that doesn’t increase disease damage is a good thing. I wish you continued success.


I will leave this article to add more information about this drug used in addition to UDCA in a small group in France. Thanks Dave for sharing and raising awareness about this drug in PSC community.


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Update on my experience with Fenofibrate since my last update two years ago. I have been taking it since the spring of 2017. In a nutshell, things remain unchanged. I have had no progression of the disease based on annual MRIs (my symptons have thus far been mild over the 10 years or since I was diagnosed with PSC, with no fever or episodes - just my routine doctor visits). My ALK levels are still elevated, but less than half the levels from before I started taking Fenofibrate (other enzymes are slightly elevated at 1.2 times normal).

I know of two other adult men who have teken Fenofibrate, both with success lowering ALK levels. I just learned that one of them received a transplant a year ago, so in his case, lower enzyme levels from using Fenofibrate did not prevent liver failure.

Wishing everyone the best!

Thanks for the update. I’m glad to hear that you continue to have good numbers taking this medication. A close friend of mine was in the hospital recently with COVID pneumonia. They gave him Fenofibrate to help in treating pneumonia. At the time he was on 7 liters per hour of oxygen. He said it did help him in his recovery although the recovery is still ongoing.


I am glad you are having success with this drug. I see so many drugs in the pipeline for PSC, but never sure what the status is, as it takes a long time. It is good to hear your story.

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Wow! thanks for posting article. Hopefully the ongoing double-blind trials on the COVID front will confirm the apparent benefits.