Guest Speaker Chat

October 12, 2000

Nancy Bach, M.D.

• Speciality Liver Diseases
• The Mount Sinai Medical Center, New York
• Monmouth Medical Center, Long Branch, NJ

Thanks to Dr. Bach for giving us time from her busy schedule to answer our questions.

A big thanks to our chatroom operators who did a FANTASTIC job moderating the chat and making it all work smoothly.

Thanks to our chatroom members for being so patient and helping us make this a perfect chat night.

PBCers Organization Guest Speaker Chat (Edited version)

Dr. Bach was booted in the first part of our chat and we had to cut and paste her answers. She was able join us again later.

Wednesday October 11, 2000

[17:24] speaker [~chatter@12.89.108.68] has joined #pbcers

[17:24] <Linie> Hello Dr. Bach!

[17:24] <Linie> Thank you for joining us as our guest speaker.

[17:24] <Linie> We all appreciate your help.

[17:25] <Jean^Ok> To ask Dr. Bach a question just type ??? when you ENTER our chatroom one of the moderators will add your name to the list and the questions, will be taken in order of entry.!!

[17:31] <Linie> Dr. bach is having a problem with entry so I have her in an aol chatroom and will cut and paste

[17:31] <Linie> i will ask her the first 5 questions from other members in the PBCers who couldn't be at our chat, then the audience will ask questions

[17:32] <Linie> Dr. Bach Question 1.) What is the TIPPS process? We understand that it helps with the portal hypertension. What stage of PBC is this stage?

Speaker Answer

TIPPS is a procedure that lowers pressure in the portal vein. Its two main indications are for a TIPPS is a procedure that lowers pressure in the portal vein. Its two main indications are ffor uncontrollable bleeding from varicesand for uncontrollable water in the belly The stage of PBC has nothing to do with TIPPS Most people with PBC do not require TIPPS/END

Question 2 Why is fatigue periodic and seemingly unpredictable except in cases of obvious overdoing? How can it be remedied and/or prevented?

Speaker Answer

The cause of fatigue in PBC is not well understood. IT may have to do with certain chemicals in the brain.Other factors such as depression and stress may contribute though are probably not the main factors causing the fatigue. There is no magic bullet for the fatigue. We recommend an exercise program for all patients and have had good results with that./END

Question 3.)  I experience a burning pain in the area of my lower sternum occurring when I climb a hill. It subsides when I rest for a minute or two. The pain seems to occur when walking after I eat, or when I am very tired. I saw a cardiologist who did an EKG, Stress Test, and Echo Cardiogram. These tests were all negative. Could this pain be related to PBC?

Speaker Answer

I do not think the pain you describe as anything directly to do with PBC. If the work-up of your heart is negative, the next place to explore would be the gastrointes gastrointestinal system.. Alternatively it could be musculoskeletal/end

Question 4.) Could you please ask about biliary sludge....what it is and how it is different from gallstones and if its course runs differently from that of gallstones.

Speaker Answer  Sludge may be the precurser of gall stones. It is a mixture of cholesterol,  bile, calcium and mucus. Unlike stones that have formed sludge can come and go...Its not clear how much sludge accounts for in the symptoms of the gall bladder/end

Question 5.)  Many of us with PBC (stage 2-3) have mentioned we have fuzzy brain a lot which is different from normal forgetfulness. What are your thoughts on this? Do you think it is an actual symptom of PBC? Could it be part of the autoimmune disease and not actually the PBC?

Speaker Answer

I hear this complaint of "fuzzy" brain on occasion from patients with PBC. I'm not sure we know exactly what it is.. In some it may be related to the fatigue, in those with more advanced disease it may be related to a condition called hepatic encephalopathy... Those that complain of "fuzzy brain" do not always have advanced disease however/end

[17:52] <Linie-Tex> welcome back Dr. Bach

[17:52] <Linie-Tex> we will try to keep you in here without booting

[17:53] <Linie-Tex> now the chatroom visitors will ask their questions...the moderator will type their name

[17:53] <LindaML-TN> Please ask your question Ann^FL

[17:53] <Ann^FL> Have you ever heard that people with an overlap syndrome of

PBC and AIH (auto immune hepatitis ) not receiving a liver transplant because

the AIH would reject the new liver?

[17:54] <speaker> The issue of disease recurrence in autoimmune hepatitis and

PBC and overlap syndrome may turn out to be a problem for some. It should

not prevent someone from being transplanted however/end

[17:55] <Erin-Az> I have heard that it is hard to loose weight while on

actigall and having PBC is this true and if so do you have any ideas on how

to loose the weight?

[17:56] <speaker> I do not think Actigall is responsible for the inability to

lose weight. I wish I had a brilliant idea on how to lose weight/END

[17:57] <kimpbc> can you have pbc and a fatty liver and are they connected

[17:58] <speaker> Yes, they are separate conditions but we have definitely

seen patients with more than one condition i.e fatty liver and PBC or even

other kinds of hepatitis along with PBC/end

[17:59] <LindaML-TN> Please have your questions ready when your name is given

[17:59] <LindaML-TN> Please ask your question JillianME

[17:59] <JillianME> have had PBC for 10+ yrs am 56yo & recently dx w/ high

blood pressure & am on med. for that. what affect if any does one disease

have on the other?

[17:59] <speaker> No effect that has been identified. Clearly blood pressure

control is important to your health however/end

[18:00] <LindaML-TN> Please ask your question Jori

[18:00] <Jori> I have 4 family members with PBC, grandmother, sister, aunt,

and cousin. I have recently been dx with Pernicious Anemia, Macrocytosis,

and positive ANA, negative AMA though, severe IBS, fatigue on fatigue, and

itching. Could this be early signs of PBC?

18:01] <speaker> It could be PBC or any other liver disease. We have seen

families that have members with PBC and then other autoimmune liver diseases

such as autoimmune hepaittis or primary sclerosing cholangitis/end

[18:01] <LindaML-TN> Please ask your question Beverley

[18:01] <Beverley> When someone has been diagnosed with PBC, what blood tests

and/or other lab tests should they expect to have done and how often, i.e.

quarterly/annually?

[18:02] <speaker> I like to have patients followed about twice a year. WE do

several blood tests which would include the bilirubin, albumin and

prothrombin time (clotting time)/end

[18:02] <LindaML-TN> Please ask your question mike

[18:02] <mike> ??? if my first ama was pos ,bx was neg and second ama was neg

does that mean 100% that i dont have pbc. why was first ama pos?

[18:03] <speaker> The biopsy should answer the question. Labs do make

mistakes.../end

[18:03] <LindaML-TN> Please ask your question Tina-IL

[18:03] <Tina-IL> Can fatty liver give symptoms similar to PBC?

[18:03] <speaker> what symptoms are you referring to?

[18:04] <Tina-IL> fatique, itching, all the classic ones

[18:04] <speaker> Any liver disease can cause fatigue and itch... Some are

more likely to cause such. Therefore the answer is yes

[18:05] <LindaML-TN> Please ask your question Ann^FL

[18:05] <Ann^FL> Hello Dr. Bach, Does elevated wbc's and absolute neutrophils

have any connection with PBC, AIH ( auto immune hepatitis ) or even thel

liver in general?

[18:05] <speaker> Not directly/end

[18:05] <LindaML-TN> Please ask your question Erin-Az

[18:06] <Erin-Az> I have been noticing some hair loss, and was wondering if

this is from having PBC?

[18:06] <speaker> again not directly... Having one autoimmune disease such as

PBC makes one more likely to develop a secondary autoimmune disease./end

[18:06] <LindaML-TN> Please ask your question JillianME

[18:07] <JillianME> my whole body is thin except for my abdomen which is

FAT...what could that indicate? i see my GI DOC next week & will adress that

then but wanted your input. thank you.

[18:07] <speaker> There are many possibilities. It is important to make sure

there is no water in your belly./end

[18:07] <LindaML-TN> Please ask your question Beverley

[18:08] <Beverley> Since many of us are dealing with arthritis and severe

joint pain, do you think Celebrex and/or Vioxx are safe and viable for us?

[18:09] <speaker> There are no studies to know the answer to that for sure.

In my experience these medications seem to be safe in some cases.. There are

reasons however not to use them and it is therefore important to consult with

a physician that knows you...

[18:09] <LindaML-TN> Please ask your question Linie-Tex

[18:09] <Linie-Tex> How common is anti-cardiolipin antibody with PBC? Would

this cause mini-strokes in a person with PBC or would the PBC be the cause?

[18:11] <speaker> Its not common though, I've seen it in pBC. It could be

the cause of ministrokes. PBC itself should not cause ministrokes

[18:11] <speaker> end

[18:11] <LindaML-TN> Please ask your question Ann^FL

[18:11] <Ann^FL> Can PBC be passed along to my daughter?

[18:12] <speaker> If you mean is it genetic, the answer is yes. We have

found that the likelihood of a first degree family member of someone with PBC

having the disease as well is in the range of about 2-4%/end

[18:12] <LindaML-TN> Please ask your question JillianME

[18:13] <JillianME> do you advocate hormone replacement therapy after/during

menopause? i use climara (patch)

[18:13] <speaker> Again limited data seems to support its safety in PBC...

THe use of hormone replacement therapy however needs to be individualized to

the patietn./end

[18:13] <LindaML-TN> Please ask your question aquamarble

[18:14] <aquamarble> Is there any relationship between fat intake and

itching?\

[18:14] <speaker> Not one that has been identified. I've heard some

interesting things from patients about various types of food precipitating

the itch however/end

[18:15] <Linie-Tex> PBCers Juanita T ask...... I have been reading in the PBC

digest that some Doctors are prescribing Methotrexate in a study group for

PBC. Methotrexate has been listed as causing fibrous changes in the liver.

Is it safe?

[18:16] <speaker> Interesting question. There is a large multicenter trial

of methotrexate that is ongoing. We just completed our study of methotrexate

and found that though it was not harmful it was not well tolerated and we did

not find that it had a beneficial effect on PBC.

[18:16] <speaker> end

[18:16] <LindaML-TN> Please ask your question Terry-uk

[18:16] <Terry-uk> what can men do to stop bone thining, i mean ladies can

take hormone replacement therapy but what do men do ? thankyou.

[18:17] <speaker> there are other treatments for osteoporosis in men such as

the bisphosphonates (ex. fosamax). YOu would also be surprised at how

effective doing weight bearing exercises and using calcium can be./end

[18:17] <LindaML-TN> Please ask your question Erin-Az

[18:17] <Erin-Az> So if PBC is genetic and I have had two kids and I know for

sure i was pregant with the one when should they be tested?

[18:19] <speaker> Again, it is unlikely that your children will have the

disease. It is generally recommended that family members be tested about 10

years before the believed onset of disease in their parent./end

[18:19] <LindaML-TN> Please ask your question Andi

[18:20] <Andi> dr bach is a 1:40 titer in an individual with mildly elevated

lfts cause for concern. mine went up from 1;20

[18:20] <Andi> concerning the antimitochrondrial test

[18:20] <speaker> Not necessarily cause for concern but very suspicious for

the diagnosis of PBC.../end

[18:20] <Linie-Tex> PBCer Starpro5 ask.......Is intermittent nausea a normal

part of PBC? My doctor has me do an ultrasound every 2 years...is that

necessary and what would it show? end

[18:22] <speaker> The information one gets on an ultrasound is limited. You

can get indirect, but unreliable information about the diseases stage. I

wouldn't rely on it for that. It is also used to screen for cancer of the

liver. Rarely this can occur in patients with PBC. end

[8:22] <Linie-Tex> PBCer Fordav ask: The group of statin medications used to

lower cholesterol also effect the liver. Would there use negate the

effectiveness of the Actigall medication and does it serve any purpose in

using one of the statin medications if your cholesterol is moderately high

and you have pbc? end

[18:23] <speaker> another excellent question.

[18:24] <speaker> The cholesterol level in PBC is not reliable in terms of

predicting ones risk of heart disease. Yet clearly people with PBC can

develop heart disease. The statins have been used in PBC and in fact in a

very small abstract were suggested to improve liver biochemistries in

patients with PBC. THis needs to be studied further/end

[18:24] <LindaML-TN> Please ask your question Jaci

[18:24] <Jaci> Has it been your experience with PBCers that they experience

pain where the liver is?? and what causes it?

[18:25] <speaker> Many people with PBC complain of pain where the liver is.

It has been my experience that most of this is due to problems in the colon

(intestines)> The colon takes a very sharp turn where the liver is./end

[18:25] <LindaML-TN> We have time for two final questions

[18:25] <LindaML-TN> Please ask your question Ann^FL

[18:25] <Ann^FL> I have heard that stress can cause the PBC to progress

faster, it this true? end

[18:26] <speaker> Stress is not good for anyone however it should not cause

the disease to progress...end

[18:27] <LindaML-TN> Please ask your question Ellen^FL

[18:27] <Ellen^FL> Have new rules been passed recently to quailify to get on

transplant list?

[18:28] <speaker> Yes, UNOS and others are changing the eligibility for

listing for transplant end

[18:29] <LindaML-TN> final question...

[18:29] <Erin-Az> so is it harder to get on the transplant list now or easier?

[18:29] aquamarble [~aquamarbl@ts005d28.ham-oh.concentric.net] has left

#PBCers

[18:30] shirley [~chatter@tnt1-208-38-6-58-cgy.nucleus.com] has joined #PBCers

[18:30] <speaker> Its not a matter of being harder or easier to get on the

list. The main changes involve determining how the livers are allocated...

In other words, only the sickest patients are actually being transplanted.

They are trying to make the variables for determining this more objective

than subjective.../end

[18:31] <Linie-Tex> Dr. Bach......We will end the chat now. Thank you so

much for taking time from your busy schedule to answer our questions. The

Q&A was very interesting and informative. You are a jewel. :) I wish to

also thank all our chatroom PBCers and quests who particpated.

[18:31] sandraWa sets mode: +v RR

[18:31] sandraWa sets mode: +v shirley

[18:31] <LindaML-TN> Thank you very much Dr. Bach

[18:31] <Linie-Tex> A big applause for Dr. Bach

[18:31] <splashcw> thank you Dr. Bach

[18:31] <Jean^Ok> All the PBCers would like to thank Dr. Bach for offering

her time as our guest speaker tonight on PBC.

[18:31] <Ann^FL> Thank you Dr. Bach

[18:31] <Terry-uk> thankyou dr bach from england :)

[18:31] <judyhnj> thank you!

[18:31] <Erin-Az> thanky you Dr. Bach

[18:31] <Ann^FL> A p p l a u s e

[18:31] <pbcmarilyn> thank you so much dr. bach

[18:31] <Jori> Thank you!!

[18:31] <kimpbc> Thank you Dr. Bach

[18:31] <Judy^WI> Thank you Dr. Bach

[18:31] <Phyllis-PA> Thank you!

[18:32] <Andi> Thanks!!!!

[18:32] <mike> thank u dr.

[18:32] <Ellen^FL> Thank You

[18:32] <JillianME> thank you

[18:32] <Jackie-Az> Thank you

[18:32] <Jaci> Thank you Dr. Bach

[18:32] <pbcmarilyn> When can we do this again....

[18:32] <speaker> You're welcome, goodnight...

THE END OF A GREAT CHAT NIGHT.........