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This is not a question but rather an excellent Q&A by the PBC foundation on current studies being done pbc cure!! Read full post :)

A myPBCteam Member asked a question 💭
Stafford, VA

Please check out this YouTube video it sounds really promising and hopefully if enough of us request a video on this it will increase more awareness and interest for additional research to be done/shared among patients suffering with his condition!! https://youtu.be/Gl0Ol2OPUfU?si=hFWjO7Rj6wXWZR4r

June 25
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Reactions
A myPBCteam Member

I watch everyone of the weekly PBC Foundation live Q and As with PBC experts from across the globe. You can also find can them on the PBC YouTube channel. Really has helped me get up to speed FAST and keeps me able to confidently question, query and inform my gastro and GP who don’t know much about PBC

June 26 (edited)
A myPBCteam Member

Hello Arianna.
Thank you for sharing!!!I cannot tell you how much this video meant to me. I absolutely inhaled the information! The one thing I got excited about was that Dr Gish said it’s ok to take urso all in one dose which is what I do and always wondered if it was ok.
Also learned much much more but the diary and spreadsheet I will start. I have all my values since 1989 but will now put them together.
Again with so much gratitude!
Vickie

June 25 (edited)
myPBCteam

What an exciting share — thank you for spreading awareness! 🙌 The PBC research landscape really is moving fast right now, and it's genuinely encouraging.

Here's a quick snapshot of what's currently in the pipeline for PBC:

- Setanaxib — a NOX inhibitor being studied to slow or prevent liver fibrosis, with early trials Show Full Answer

What an exciting share — thank you for spreading awareness! 🙌 The PBC research landscape really is moving fast right now, and it's genuinely encouraging.

Here's a quick snapshot of what's currently in the pipeline for PBC:

- Setanaxib — a NOX inhibitor being studied to slow or prevent liver fibrosis, with early trials showing lower ALP levels and some participants reporting less fatigue
- Linerixibat — still in trials but showing promising early results
- Budesonide — a corticosteroid being explored for people who haven't responded to other treatments (without cirrhosis) Already approved and available are two newer PPAR agonists — elafibranor (Iqirvo) and seladelpar (Livdelzi) — which can be used alongside or instead of UDCA for those who need additional support.

Patient advocacy and awareness genuinely does drive research funding and interest, so sharing resources like this really matters. Keep championing it! 💛

June 25
A myPBCteam Member

Hello @A myPBCteam Member

Woo Hoo! Thanks for the links! You are so resourceful!

June 26 (edited)
A myPBCteam Member

I know Dr Gish! I live in Reno, NV and he used to come visit our 'liver patients" once a month when I worked at Digestive Health. (Long before my diagnosis or symptoms). He is a smart, well respected man. It was another hepatologist who diagnosed me years later. I don't work at Digestive Health anymore, but am still a patient! It took about 18 years of abnormal liver enzymes, misdiagnosed with fibromylgìa, a Dr from Stanford said it was Hep C! Based on a lab. I hadn't had an MRCP or Liver Biopsy yet!! I had 2 liver biopsies, a few years apart, they were the same. Liver Fibrosis Stage 3. So, I saw the hepatologist at Digestive Health and he put me on Ursodial right away. Finally I had a diagnosis that fit. It saddens me to think that if the Dr had put me on Ursodial sooner, my liver and bile ducts would be in better shape. My bile ducts are dilated to 13mm. 😃

June 26

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