A Patient's Guide to PBC (Primary Biliary Cholangitis)
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- Опубликовано: 28 июл 2024
- A comprehensive PBC resource providing essential information for patients and doctors. Professor Julia Newton and Professor David Jones, experts in the field of PBC, give a thorough but accessible guide to the condition and address many questions often asked by patients. Please note: The DVD was recorded in 2011 and since then the name of the disease has changed from Primary Biliary Cirrhosis to Primary Biliary Cholangitis. Also, new medication has been introduced so we recommend that you speak to your Doctor about which medication is best for you. We are currently (Summer 2019) working on a new and revised version of this video.
I absolutely love how thorough and empathetic this doctor is in his presentation.
Thank you very much for this video. I have had PBC for 25 years and I have never had this good of an explanation of the disease.
What meds are you on? Have u gain weight how u feeling? I just being diagnosed😮been bumm out
Have u gained weight on ursidol how u feeling n what side effects have u had
@@mariavanderlugt3670 I am on Urso. I don’t really have any symptoms and don’t think I gained weight when I went on Urso.
@@mariavanderlugt3670 I don’t think I gained weight when I started raking Urso. I do sometimes get diarrhea from it.
40 years old and got my confirmation few weeks ago,and brought me to this video.Ive already lost my gallbladder and have been experiencing so much pain,this video has helped me understand this more and explainin it better to my family and friends.When the doctor goes woo to your M2 test you know its not good..im also male and live in las vegas,nv ,im most definitely exhausted, itchy,and have a constant floater in vision,ive gone down to 4days at work
Excellent. Thank you.
Excellent information!!
in 27:25 min i think (my hypothesis) that the root cause of PBC is too dense bile, which get stucked in smallest bile ducts (something like ink in rarely used inkprinter.
this very dense bile contains obvioulsly toxins - hence the immune system starts attacking it.
Then there may be light inflammation.
My questions are
1) how to make bile more LIQUID
2) how to increase the pressure in the hepatocytes - so the bile is pushed out with more energy trough cholangiocytes (gates in the medieval wall trough which bile gets out of the castle (hepatocytes) into the bile ducts.
Very helpful information
Has anyone with PBC experienced scalp issues?
For eg: drying out your scalp. Symptoms include bumps on your scalp as well as scaly, dry patches of skin underneath your hair.
Yup!!
Psoriasis
No but I have a rash spot int the top of my shin on my right leg that never goes away
Are u taking ursidol medicine have u notice gain weight
I was diagnosed in 2019,,, my gp is not very up to date with it which is crap🙈 thank god for these videos
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Thank you very much for this video. though it is not brand new it is very helpful. I want to tell you about my good experience of the medicine pregabalin for the pruritus (itch). It does not take it all, but it is much less irritating. I wish I could use your service but as I live in Iceland I dont think it is possible. Here there is no support from the health system in my case.
Can one diagnose by ANA?
I’ve had psc for 12 years, why wouldn’t she get listed
For a transplant? Living donor?
Wish this was explained to me the Caribbean is very backward
I have bent over and passed out!
The second time, I bent over to pick something up, I got dizzy and my legs gave away 😢 they have been checking everything else nothing shows 😮
Do y'all have an updated version of this video that uses the term Primary Biliary Cholangitis instead of Primary Biliary Cirrhosis?
We're waiting for Prof Jones to do a new video. We've got the funding and the people, just waiting for a slot from him. The new video will of course use the term Cholangitis but in the meantime, this is all we have.
@@livernorth7778thank you for replying. I appreciate it. I'm new to all this. This is a very good video, but will wait to share the new one.
@@livernorth7778 great news !!
Maybe Dr Jones could explain what to do when AMA is positive but AMA M2 is negative?
I have cirrhosis
At first it was fatty liver but Dr's did nothing now cirrhosis..I have bouts of nausea, fatigue, weakness after vomiting, lasts for days, hot and cold chills, pain and bloating. Stress and anxiety may bring it out but I can't eat much and I've lost from 190 to 160 in 3 months..any ideas on what I can do
It's miserable been going thru it since I was 37 and I'm 55 now
Please help me
My husband got a heart pump last September 2021 and I have a 14 yr old and two other older children..I can't be sick..thanks God bless you all
Cirrhosis Caused by medications Nash
I too had my gallbladder out in 96
50 or more pellets..
Hi my name is Pedro H. And I have been diagnosed with PBC in the pass year, I have work as a spray painter for the pass 23 years worked with paints and toxic chemicals I would like to know if the environment factor has to do to trigger with PBC.
We are currently funding research into environmental toxins and the instances of PBC. Early signs are that there COULD be a link but we will have to wait for the paper to be published.
Thank you very much for your info.
If I send my AMA m2 report will you confirm is it pbc in india all doctors are saying me that I have IBS but it never goes even after so much of medicine so may you check
From what i know yes chemicals are a factor
Have u gained weight on ursidol medication
I haven't eaten since 6/17/22 until today 6/20/22 I finally ate tonight sherbet..
Never eat after 8pm ..found out the hard way
Why what happens
Do you recommend Tudca?
good question !
why has no one told these people the name has changed? it is Primary Bilary Cholangitis.
Thank you for your comment - we will update the description as soon as possible. The disease was called Primary Biliary Cirrhosis when this video was recorded in 2011. Although the name has changed, the disease and the symptoms have not and therefore we hope that the DVD still has a relevance for those people who are newly diagnosed with PBC. A new DVD is under development, again funded by LIVErNORTH, however as we are run entirely by unpaid volunteers, we have to rely on the generosity of people like Professor Julia Newton who give us their time and share their expertise free of charge.
thanks it does look like a great informative video, but it worries me that the name was the old name. (I couldn't see the date) I will look forward to the updated version. I have to say this is such a high quality informative video I did not realise this was run by volunteers and I do understand the difficulty in accessing time and expertise from professionals on a voluntary capacity. Sorry the comment may have sounded a bit harsh. Thanks for your reply.
@@livernorth7778 What is the new name?
@@10Tuxedo Primary Biliary Cholangitis
@@livernorth7778 aka primary biliary hepatitis too?
I have Autoimmune hepatitis with PBC .my hospital and doctors have told me nothing about my PBC .This is very upsetting for myself ..Very poor care from Bournemouth hospital.
Hi Joanna - you do know that you have a right to be referred to a hospital of your choice?
I do too hon.. had this for over 10 years.. you got this.. lots of struggles and I'm still learning ... stay strong
13:04
Does it make you have mood changes? With toxins I mean
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