Send in your questions.....

[DonnaBoll]

PBC Foundation

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A change to our usual PBC Q&A. Dr Andreas Kremer will be with us at 2pm UK time on Friday to answer your #PBC questions. Click here for the room: pbcfoundation.org.uk/events... or watch us on Facebook Live. Send us your questions early to [e-mail]

#PBCQuestions #PBCAnswers

[gwillistexas]

Thanks. I would have been looking for it . I usually have to forward to my email and listen later after work.

[DonnaBoll Administrator in reply to gwillistexas]

It's such a great opportunity to get some answers to your questions as well as find out something you didn't even know. Having these experts nearly every week is such a service that The PBC Foundation provides. I hope more and more people 'tune in' to see how invaluable this can be.

[gwillistexas in reply to DonnaBoll]

For a long time there were Roundtable Discussions. I remember Dr Gish was always involved as well as other drs. That’s where I learned that Ocaliva had shown that it could reverse fibrosis. They had done studies and performed biopsies. I believe it was 40% of the patients had a decrease in fibrosis. I had stage 2 fibrosis in 2 biopsies and my last one, I think a year ago, I was stage 1 on fibrosis and PBC. So I firmly believe Ocaliva is a great drug. I meet with my hep tomorrow to discuss Elafibranor further. I received the drug but my better judgment tells me it is not for me. I searched and found it has a high risk with statins, which I take. It said that drug with a statin, either drug can cause toxicity. So I’m doing what I can to stay on ocaliva. Also, a patient liaison called me last week from IPSEN to discuss the drug. I told her my concerns and she agreed to discuss further with my hep. So here we are. 😊

[DonnaBoll Administrator in reply to gwillistexas]

I commend you for doing your 'homework' on both Ocaliva and Elafibranor. Although studies have shown Elafibranor has been effective in reducing liver enzymes, it isn't for everyone. We all need to be our own advocates. No one knows our body better than we do and how certain drugs/foods affect it. Great news on reducing the fibrosis! Let us know how the appointment with the hep doctor goes.

[gwillistexas in reply to DonnaBoll]

I will.

[gwillistexas in reply to DonnaBoll]

Hi Donna. You asked me to let you know how my appointment went. My hep wants me to start Elafibrinor today. He said there are no reported cases of this drug causing osteoporotic fractures. And he wasn’t concerned about the statin but I can ask my internist if he will lower my dose of Rosuvastatin to ease my concerns. So, the doctor has spoken 😊

[DonnaBoll Administrator in reply to gwillistexas]

Sounds like he has done his homework on Elafibrinor as well. I hope you have good results on this. Blood work being done every 3 -6 months, I hope. All the clinical trials proved very promising in its use.

[gwillistexas in reply to DonnaBoll]

Yes, I will have labs in October.

[gwillistexas in reply to DonnaBoll]

I’m hoping if someone else in the group starts Elafibrinor, they will let us know and also how they do with it. I feel like I may be only one at the moment.

[DonnaBoll Administrator in reply to gwillistexas]

I would just ask here every few months or so to see if someone else is on it.