April 2018, update on OCA

medicalxpress.com/news/2018...

Just been reading this thought I’d post, there may be others interested.

[Ktltel]

Thank you!!! What encouraging information!! How did you come across this? You would think the moderators of this forum and on others would have shared this news. I see its dated April 2018. Did I miss something? This is good news isn't it?

Does the fact that they're monitoring the progression of PBC via biopsy rather than MRE lesson the actual findings in this trial???

❤

Stella

[Hidden in reply to Ktltel]

Just a random search, I saved it some time ago, but only just got around to reading it. I tend to save loads of stuff and then read it at my leisure.

I know I miss posts so I did wonder if it had been posted before, but thought anyone new to the forum or the medication might be interested.

[Ktltel in reply to Hidden]

I may be starting Ocaliva soon. But the fact that they used "biopsy" to justify no progression leaves me with a lot of the air out of my happiness balloon. Why aren't they using MRE or Fibroscan???

Stella❤

[Hidden in reply to Ktltel]

I think perhaps the biopsy was only used because it’s been a proven method for a long time, whereas the other forms of testing are a lot newer.

[Hidden in reply to Hidden]

And remember this was the criteria for research purposes, it doesn’t appear to suggest all patients would need biopsy to monitor progression.

[gwillistexas in reply to Ktltel]

Ktltel...that’s a good question for your dr. I’ve not had a biopsy nor do I want one. From what I’ve seen some drs do one at initial diagnosis to check condition of the liver & also to rule out other problems. But it doesn’t check stiffness. Biopsy is not the gold standard anymore , according to Dr Gish, but some drs obviously won’t step out of their box & put advanced technology to use in the better interest of their patients. I hope this new hepatologist doesn’t want to do one on me. Too risky. When is your next appt?

[Ktltel in reply to gwillistexas]

Hi,

My next appt. Is Friday. I'm doing labs this next week too. She should have the results by the time of my appt. Plus I'm hoping to get a referral to have an MRE. 10mg of Ocaliva is top dosage right? Do you think the fact that you only took 5mg this past year may of helped your LFT's to go down, but wasn't enough of the medication in order to stabilize fibrosis? Would 10mg have helped with fibrosis?

Stella❤

[luxe66 in reply to gwillistexas]

Good morning!

I had your exact opinion about the biopsy)

Took me one year to decide to get one)

I havent got a new info from it, just a confirmation of the diagnosis)

But..on the other side...the procedure was way easier than i was expecting it to be...maybe have a bit more piece of mind now..but, of course, it is all personal choice after all, whatever calms your mind down!

[gwillistexas]

I really don’t know. I remember my drs NP saying they didn’t need to increase as long as levels were good. I know 10 mg is the optimum dose. I have many questions for new hep. Hope he’s ready for me😀

[Ktltel in reply to gwillistexas]

Keeping us all in prayer. ❤❤

[gwillistexas in reply to Ktltel]

Ktltel...Always🙏🏻☺️🙏🏻💕

[shaza1966]

This is great news for the non responders of urso ty for posting

[PBCRobert Partner]

Just to highlight, this is an important study and yes we did share it with the membership of the PBC Foundation. So, if you are a member you would have read it in your free edition of the Bear Facts.

If not, you wouldn't have. This is exactly why we encourage people to join the Foundation. Here is about patients talking to each other with the occasional response from us.

The Bear Facts (and our app with new version coming out soon) are our main tools for reaching our membership with important information.

Yours, as ever,

Robert.

[EileenUSA in reply to PBCRobert]

Robert,

I am so grateful for the work the Foundation does. It is an amazing resource. Thank you. The Foundations document on Diagnosis and Management of PBC is MUST reading for all PBC patients! link to document: pbcfoundation.org.uk/upload...

I think that people don't always understand that this Forum in the Health Unlocked System is "sponsored" by the PBC Foundation UK.. but it gets lost in the mix that there IS a separate PBC foundation UK web site and resources.

I would suggest that you put a PINNED POST up -- "Join the PBC Foundation UK" and in the post include link to joining etc. That way when new people come to this forum they will see it- and it will be easy for any of us to point them to the Pinned Post.

Thanks again for all you do for PBC patients!