I was hoping that this post would be the one where I get to celebrate how well the Fenofibrate was working out for me. Took it for about 7 weeks. Was quite uncomfortable the whole time with just about every side effect listed (didn't actually read the literature until this week because sometimes that can have a very negative impact on my expectations). Had bloods done at 4 weeks and ALP went from about 400 to 130 and I was so pleased. However ALT and AST went way up. Doc said let's try for a bit longer. This past weekend I was sure I had COVID 19, as I was so very sick and sore. Turns out it is the Fenofibrate. I am getting so I can barely function, so I will not continue to take it. I am so very disappointed, but hoping I will start to feel better soon. Perhaps I will try again in the future.
FENOFIBRATE: I was hoping that this post... - PBC Foundation
FENOFIBRATE
What was the dose you were on? I am looking at adding a second med and was considering this over Ocaliva since I have been stage 4 for over 20 years.
So sorry to read your post Susn hope there are alternatives for you is it all fibrates that impact on your health or is it possible to try Bezafibrate which is often mentioned across various forums. Let us know how it goes
Hi Susn what a shame that sounds like a horrible experience. I take Ursodexacholic Acid 3 times daily and Bezafibrate once a day and joy of joys my liver readings are normal. I have been diagnosed with PBC for 21 years I now only see my Specialist once a year I have never concerned myself with “readings” my questions have always been am I better or worse. Initially I was over 400 hadn’t a clue what that meant but all I know is that after the addition of Bezafibrate 2 years ago my readings are normal and there is no further scarring to my liver. Speak to your Consultant about the difference between Fenofibrate and Bezafibrate it may be beneficial for you to change over to Bezafibrate. Hope this helps.
Sorry to hear your having problems with Fenofibrate, I’am guessing your in the US.
Have you tried a lower starting dose, perhaps have a word with your doctors it might suit you better and still have the desired affect.
I’am in the UK and take bezafibrate, thankfully it’s working well with no side effects, so I hope that lasts as all my blood numbers are normal now.
Sorry to hear that, Susan. Have you considered trying intermittent fasting? When my liver enzymes went up on URSO alone, I decided I did not want to take another pill without exhausting every dietary option I could to manage my disease. I was already eating healthy so after reviewing a number of medical articles on the benefits of intermittent fasting, I gave it a try. I started with a daily 16 hour tast, eating only between the hours of 10 am and 6 pm, and eventually extended the fasting period to 18 hours daily, eating only between 12 pm and 6. I allow myself coffee in the am with a small bit of cream and drink plenty of water until noon when I eat.
The results have been pretty amazing. All liver enzymes returned to normal within a month, and after 2 months of fasting, they have come down even more. And an unexpected benefit is less joint pain and a complete reversal of all digestive issues I was having. No more bloating, cramping, loose stools or gas. At my last visit with my hep, he told me he wished all his PBC patients would do what I am doing!
Any way, in case you're interested in learning more, there are numerous articles about intermittent fasting on the web. Here's one I found for you:
sciencedaily.com/releases/2...
Are you doing 12 to 6pm for the rest of your life or are you planning to do it until your liver has settled down? Thanks for the information
I plan on making this a lifestyle change. I feel a lot better and it's no longer hard at all. That said, I won't be reticent to depart from it on special occasions.
Good luck!
What was your alk phos number before & after following this protocol? I am also trying IF, but starting with 12 hour fast first.
Hi there. My highest alk phos was 250; after a year with URSO on board it settled in at 175...still higher than optimal. After 2 months of adding IF , it is 136.
Good for you on trying IF and starting with 12 hours. Done gradually, it shouldn't be too hard. As you extend your fasting hours, make sure you drink plenty of water to stay hydrated. I use sparkling water and the carbonation in it relieves any occasional hunger pangs.
By the way, on a PBC forum I belong to, there are numerous people doing IF and claiming the same benefits I am. Good luck!
Thank you so much. I want to lose weight & also take the Alk Phos down. My endocrinologist suggested IF to me for weight loss. I didnt know it also impacts the liver numbers. So thank you for posting about this & your suggestions above! Much appreciated.
Haley
I have been taking Ursodiol for 8 years but my my ALK was climbing to around 400 so my hepatologist and I decided to add Fenofibrate. Because I am very sensitive to drug side effects, we started at 48 mg 1x day. I eventually doubled the dose and the muscle pain was terrible. We dropped it back to 48 mg and side effects disappeared after about 10 days and my numbers have been normal for the first time in years. I would suggest you talk to your doctor about lowering your dose and check bloodwork again. Don't give up and good luck!
My mothers ALK is still very high, shes been Urisodol for almost a year now, doctors then prescribed fenofibrate at 145mg but she had stomach pain for two weeks, I should bring it up to the doctors about lowering the dosage as she did look and feel better when she was on it.
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Dreaded Itch!
