Experiences with urso, ocaliva and bezafibrate

[nickey8]

Hi everyone!I was just curious about your experiences taking a combination of udca, ocaliva 10 mg and bezafibrates.

Does it improve the itching? Did you notice any unwanted side effect from bezafibrate, e.g. in kidneys?

Thanks for sharing and stay healthy and motivated!

[DonnaBoll Administrator]

In my experience someone takes Urso + Ocaliva or Urso + fenofibrates. One of the big complaints from many who take Ocaliva is that it makes the itching worse while fenofibrates often improves it. Again, everyone can respond differently.

[nickey8 in reply to DonnaBoll]

Thanks for your answer, DonnaBoll! :*

[Hulubulu]

Bezafibrates was a lifesaver for me! The itch was so horrible, but after a few weeks on bezafibrates it made a big difference. I also helped lowering my numbers

[Candy12]

I’ve no experience of taking Ocaliva. I take URSO and Bezafibrate and have done so for some years now. I had no side effects from taking it and my blood numbers are all in normal range ever since.

I didn’t itch at the time of starting it which is why I decided to take it instead of ocaliva , as it was said at the time ocaliva could make you itch and I didn’t want to risk that. I still don’t itch thankfully.

When I first went onto Bezafibrate I was monitored monthly for three months to check there was no kidney issues. That’s been my experience so hopefully it’ll help in some way.

[DonnaBoll Administrator in reply to Candy12]

So glad to hear that taking Urso and Bezafibrates has made such a difference for you. I know how scary it is to take any medication but when good things happen, we are glad we do. We are so fortunate to have these medications

[sophiaS1980 in reply to DonnaBoll]

Some ppl in my doc's office stated that Urso cause them to have more pain in the upper abdomen, I don't have pain due to the med. but many say they do.

[DonnaBoll Administrator in reply to sophiaS1980]

We all have to remember everyone who has PBC has PBC differently. Right upper abdomen pain can be common just due to the inflammation to the capsule that surrounds the liver (the liver itself has no nerve endings to 'make pain'). PBC, itself, is inflammation of those bile duct cells that enter the liver. Heat may help anyone who experiences this.

[nickey8]

Thanks for your answers! It really helps me a lot. I have another question: do you take bezafibrate before or after the meal? Does it matter when it is taken? Thanks a lot again! :*

[Candy12 in reply to nickey8]

I take mine after food, mainly after my evening meal.

I have tried after other times through the years but settled on the evening as a it’s easier to remember when I'm at home. .

[nickey8 in reply to Candy12]

Hi Candy, thanks for the info :*

[Wocket]

I was on Urso and bezafibrate but my kidneys suffered. My GPs didn’t realise that it was the bezafibrate and put it down to old age (59) so didn’t even tell me. At stage 3 the GP told me so I asked if it could be the bezafibrate they said no but professor Jones on a question and answer session, told me to stop it with immediate effect, because it was the bezafibrate. The moral of the story is to ask about kidneys and don’t be fobbed off. The positives were my numbers came down and the itching improved.

[nickey8 in reply to Wocket]

Hi Wocket, sorry to hear what happened to you, but hopefully you are in a more suitable treatment now 💪🏻❤️

[DonnaBoll Administrator in reply to Wocket]

So thankful you pursued what the cause of the kidney problems might be. Again, this is another perfect example of what can happen when we are cared by someone who really doesn't know about PBC and associated medications for it. Those Q&A sessions are so valuable. Being informed makes all the difference! Having your number lower and less itching is surely a 'win win' for you. Thank you for sharing your situation.

[Wocket in reply to DonnaBoll]

Sadly numbers are back up but not bad. Itching is back but that has never been too bad.

[Karaliz]

Hi Nickey8

I have taken Urso for 20 years ( diagnosed at 38). I was recruited into the OCA trial 10 years ago as I only ever had a partial response to Urso and have, since that time, taken OCA 10mgs.

Last year my hepatologist started me on fenofibrate 145mgs so I do take all 3.

The addition of the fenofibrate is in light of new research that indicates a more aggressive approach needs to be taken to try and normalise ALP as much as possible.

After 3 months on the triple combination, my ALP was within normal range for the first time in 20 years. My ALT and AST were however more elevated so not sure if this was an anomaly or related to the addition of the fenofibrate- will wait for the next round of blood tests.

Although I have widespread cirrhosis, I have been fortunate to not experience any itching at all.

best wishes

Karaliz

[nickey8 in reply to Karaliz]

Thanks a lot for sharing your experience with me, Karaliz!