Fenofibrates

[DonnaBoll]

Someone asked if Dr. Jones' book mentioned the use of fenofibrates.... yes, it does in several places. This might be a good book to have if you are considering using them. He is the leading expert on PBC. Hope it helps... The subject is discussed in the chapter for 'Treatment of PBC'. Many have been helped not only with the itching taking this but also the improvement of their liver function tests.

[SuziS]

I’m on Bezafibrate and it defo has improved my stats

[DonnaBoll Administrator in reply to SuziS]

So glad to hear that. In my experience with people taking them, every one of them has seen improvement with itching as well as numbers. Who knows maybe this could some day be a treatment for the disease like Urso. We have to stay hopeful that new drugs will be available when Urso doesn't work for someone.

[SuziS in reply to DonnaBoll]

It IS a treatment now for PBC Donna. I think the French started using it and I’ve been in it for about 2 years.

[DonnaBoll Administrator in reply to SuziS]

I did not know that... this could surely be a game changer for many who don't respond to Urso and/or Ocaliva.

[Wocket]

yes they do help with numbers and itching but you need to be aware that they can affect the kidneys. I took them for about 3 years but had to stop because my kidneys were at stage 3 kidney disease. Since stopping them my kidneys haven’t got any worse.

[DonnaBoll Administrator in reply to Wocket]

You are right.. that's why it's important to always check kidney function along with the liver enzymes whenever you get labs drawn. For me, that information comes in my CMP - Comprehensive Metabolic Profile. Even being on just Urso, kidney function should always be monitored as well.

[Wocket in reply to DonnaBoll]

My GP didn’t know that bezafibrate could cause kidney damage and just said it was because I was old. I was 59 so I stopped against my doctors view and thankfully my kidneys stopped getting worse. I don’t want to frighten people but if they are aware of the facts, they can look out for problems.

[DonnaBoll Administrator in reply to Wocket]

I am so glad you posted this.Thank you! Knowing as much as you can about this disease, gives you more confidence to know when your care isn't what it should be or if your doctor doesn't know how to treat PBC. Be proud of yourself! We all have to advocate for ourselves. I know some of us find it hard -or uncomfortable - to question their doctor. This is your life and you deserve the very best care. You go girl!!! We have to look out for our own care.

[danaLL]

I started at 6 to 9 months ago. My numbers dropped by 2/3. Every single one of them is normal now. I seriously questioned why it took so long to get me on this medication. my Urso has been working, but my alk phos was still elevated . And now sits at 67. I also have autumn hepatitis and even though my AST and ALT were in the normal range they dropped significantly as well as did my total bilirubin.