Dr. John Vierling

[butterflyEi]

Just in case you are not on Facebook or connected to the PBCers Organisation in America there is a very good two part video published by the Rare Disease Report given by Dr. J. Vierling which may be of interest.

This is the link for part 1.

raredr.com/conferences/aasl...

PBC Foundation - I hope this is okay to post on here.

best wishes

[Oidra]

Very interesting, part 1 explained PBC very clearly and is well worth listening to. Part 2 is about new drug trials.

[Gioielli5]

Very interesting. Thank you x

[Hidden]

Thats very positive news for people who have not had a good response to urso or for those who are more advanced with the disease.

[PCBnPBC]

That is very clear and informative. A "must watch" for anybody with PBC. I am post transplant now with I.C. but my ALP is coming down (dropped significantly when I was put back on Urso) this made so much sense to me, thank you for the "nod" (link)

[Calogia]

Thank you ButterflyEi. Just hearing a doctor who specializes in PBC explain it so well was so worth listening to.

Calogia

[LeanCat]

Very interesting. Thank you for sharing, much appreciated.

[Sdsurface]

Great video. I am fairly recently diagnosed and devoring all the info. I can find. Grateful for this forum.

[butterflyEi in reply to Sdsurface]

It is a great forum, one I could not do without and so grateful to have the Foundation as our back up.

best wishes

[imansmum]

Thank you so much , very clear and interesting.

[Karaliz]

Thanks very much butterfly... Very clear and current information. As someone on OCA as part of ongoing trial I found it very informative.

Karaliz

[mylo2]

Very interesting,I wish I could tolerate Urso, as the specialist was pleased with the results, but suffered with the runs, more or less becoming a recluse because of it, so stopped taking it, I am on a course of vit D3, , which I think is helping towards the way I have been feeling, my appetite has returned,and feel more normal than Ive felt for yrs,has anybody else found this vit helpful.?

Mylo2

[butterflyEi in reply to mylo2]

Hi Mylo2, such a nuisance not to tolerate the Urso. I have read elsewhere of people trying Urso from different sources with more success. Have you asked the Foundation about this? If you are not already a member direct you can link to them from here or google them.

I do not take any vitamins. I tried Oil of Evening Primrose for about 4 months but I did not think it made any difference for me.

Hope your blood test results show an improvement with the vit D3. Do let us know.

best wishes

[mylo2 in reply to butterflyEi]

Thanks butterflyEi I will follow your advice,will let you know the results of my next blood test . Best wishes,