Attending PBCers conference in Las Vegas Sun-Wed. Do you have specific Q's you'd like me to ask the presenters? Anyone else here going?

[JennerLayne]

Hi All! I know many of you are located in Europe, some 'down under' and many of us geographically dispersed elsewhere around the globe, including the USA where I reside. Several months ago I posted PBCers conference info and as promised, I do plan to offer session recaps so you can learn too. I am especially excited about the schedule with renowned specialists, which I've posted the names of and topics below. I am hopeful there will be ample Q&A time following each speaker and that said, encourage you to post your questions and to which presenter it should be directed. If time allows, I will certainly raise my hand and ask the Q on your behalf. I'm generally a copius note taker and will take care to jot down as much info as possible. A complete program directory (.pdf) can be downloaded here: pbcers.org/education/confer...

PBC: Educate, Inspire & Achieve

Guest Speakers

M. Eric Gershwin, MD, MACR, MACP

University of California at Davis Chief, Division of Rheumatology/Allergy and Clinical Immunology, Professor of Medicine (Rheumatology and Allergy), Director, Allergy-Clinical Immunology Program

Topic: What’s New & Hot in PBC

Carlo Selmi, MD

University of California at Davis, University of Milan Assistant Adjunct Professor, Division of Rheumatology, Allergy, Clinical Immunology Department of Internal Medicine

Topic: Overlap Autoimmune Diseases Associated with PBC

Christopher Bowlus, MD

University of California at Davis Professor of Medicine, Division of Gastroenterology and Hepatology

Topic: Emerging Treatments for PBC

John M. Vierling, MD, FACP

Professor of Medicine and Surgery, Chief of Hepatology, Director of Baylor Liver Health, Program Director of Transplant Hepatology Fellowship Baylor College of Medicine, Director of Advanced Liver Therapies St. Luke's Medical Center

Topic: Ask the Clinician Scientist

Keith Lindor, MD

Arizona State University, Phoenix, AZ Executive Vice Provost and Dean, College of Health Solutions

Topic: Update on the Management of PBC

Joseph Hardy, MD

Nevada State Senate, Family Medicine, Henderson, NV

Topic: Depression & PBC

Christine Haskin, DDS, PhD

School of Dental Medicine University of Nevada, Las Vegas Associate Professor in Residence of Clinical Sciences

Topic: Maintaining Oral Health in the Presence of Liver and Autoimmune Disease

Leigh MacConell

Vice President of Clinical Development, Intercept Pharmaceuticals (Sponsor)

Topic: Research in PBC Treatment: Update on Obeticholic AcidJerry Mabary

Jerry Mabary

Sandhill Scientific, Inc., Fibroscan Vice President

Topic: Non-Invasive Liver Stiffness Assessment

Barbara Duckett

Social Security Administration Public Affairs Specialist

Topic: Social Security Disability Programs

Ciara Kennedy

Chief Operating Officer, Lumena Pharmaceuticals (Sponsor)

Topic: LUM001 – a novel treatment for Primary Biliary Cirrhosis

Leanne Earnest, PhD

Psychologist, Las Vegas, NV

Topic: Mind/Body Connection

Robert Gish, MD

Consultant San Diego, CA

Topic: State of the Art: Liver Transplantation, overview and application to PBC patients

Emily Kartchner

Nutritionist, Utah

Topic: Nutrition for PBC patients

[Hidden]

Hello Jenner. My question best relates to Joseph Hardy. Recently I had elevated LFTs after a prolonged attempt to sell my house. As the process took longer than expected I started to feel " a bit down", but after 16 months began to get feet and lower limb pains, pain in the upper abdomen, and ever increasing fatigue. After having these unpleasant symptoms for 4 months, I pulled out of our sale and the LFTs recovered and all symptoms disappeared. How important is our state of mind with PBC? I have been to our PBC foundation's Positive Mental Attitude workshops and would not call myself depressed. Before the onset of PBC I was suffering a ridiculous amount of stress and could barely cope with 5 hours of "life" before a sleep.

[PBCRobert Partner]

I'll be there. Do come and say, "Hi."

[Puddles]

Hi JennerLayne,

How wonderful to be able to go and get up to date information in so many areas relating to PBC, it sounds really interesting - wish I could go I will look forward to hearing how it goes and any information you can share when you return. I will be particularly interested to find out how reliable they consider fibroscans in monitoring fibrosis / cirrhosis in PBC as this is currently how I am being monitored yearly in addition to bloodwork.

Thank you for offering to share what you learn with us all, very much appreciated!

Puddles

[barclay12]

Dear Jenner.

This conference seem to be addressing many problems that we PBC sufferers have to attend with every day. I'm constantly informed by my consultant that what i call little problems,could be PBC.

For example my gums have white lines over the top of my teeth my dentist has never seen this before in a healthy mouth. I can't use my hands for open and closing doors plus general house work because it hurts to much. Cholesterol lumps and bumps all over my face and hands and possibly at the back of my eyes. Hair loss. Some days my legs are so painful. The sleep pattern problem.

I must stop moaning, but it's answers I think we all require.

I'm on the transplant list, I'm informed these problems will all disappear when I've had my transplant.

Good luck with the conference Jenner

Kind regards

[LeanCat]

Can't make it to the conference this year so really appreciate that you'll keep us posted JennerLayne. I don't have any questions at this moment as I'm one of the lucky ones without any symptoms. Thank you!

[SimbaTutor]

Jenner, thanks for opening the door for questions. I am newly diagnosed, so I am still learning about all this. Although I started ursodiol a month ago, the blood work done last week shows the numbers are still climbing on about everything. I have noted that many on this forum talk about their numbers are all over the place and not to worry about it when they go higher. These questions are for John Vierling: Do the increasing numbers mean the liver is becoming less efficient in processing or that more of the biliary lobes are being compromised? Also, since the liver is one of the organs that regenerates itself, can the fibrotic lobes be improved or is it permanent damage? Thanks for being willing to be a conduit of information.

[Newsroom in reply to SimbaTutor]

Great question , am also interested in the answers .

[SC49]

I would love to know their view of fatigue and cognitive problems. I am absolutely floored by fatigue and my thinking/ processing skills have really declined in a relatively short period. By way of illustration, I used to read about 4 or 5 books a week but I haven't read a full book for about 3 years, since before my diagnosis. I struggle t help my 15 year old with his homework even though I am educated to beyond degree level. The decline in my thinking, memory and ability to process and fatigue were the first things that sent me to the docs.

I've read as much as I can about these problems but as far as I can see, there is little consensus among the medical professionals about whether they're standard symptoms of PBC.

If they agree that these are 'normal', I would be really interested in knowing if there are any developments which might lead to a treatment for such symptoms in the near future.

[cazz22]

Hello Jenner.thanks for offering to put our questions forward for us.if you get the opportunity could you ask about people experiencing nodules on liver/pancreas.indeed it's how I was diagnosed to have Pbc.i have few other symptoms.i have since asked(thought it was cancer before) if I even have Pbc but was told I have the highest titre of AMA.everyone I ask in uk just say 'it's common'among pbcers to have these nodules but doesn't seem that common to me.any help would be aprieciated.thank you again x

[Leelee19]

Thanks a lot for taking the effort to ask the questions. If the pbc conference can record the sessions and upload it to YouTube channels it will be best for everyone who couldn't be there in Vegas.

[Newsroom in reply to Leelee19]

Another great question , thanks what a good idea Utube would be