I just found this news article this morning - please check it out, or google it.
edmontonsun.com/2015/02/19/...
I will be asking my gastroenterologist about it when I see him in May (in Edmonton). Will post any other updates as I can.
I just found this news article this morning - please check it out, or google it.
edmontonsun.com/2015/02/19/...
I will be asking my gastroenterologist about it when I see him in May (in Edmonton). Will post any other updates as I can.
I also found this article:
New evidence linking autoimmune liver disease with viral infection
Livewell Newsletter
CLF PBC BrochurePrimary biliary cirrhosis (PBC) is a type of autoimmune liver disease that results from the body's immune system attacking the liver causing slow, progressive damage to the bile ducts. When the bile ducts are damaged, bile and other substances accumulate in the liver causing progressive damage over time and eventually leading to cirrhosis.
Dr. Andrew Mason, at the University of Alberta in Edmonton, has invested the last 15 years studying PBC and his exciting work is beginning to shed light on the possible causes and the potential for radical new therapies. The Canadian Liver Foundation has helped fund his current research project – which involved the development of a laboratory model of PBC using a virus that is similar to one found in PBC patients that causes similar liver damage. Using this model, he has discovered that the development of liver damage can be blocked by antiviral therapy.
PBC affects mostly women and researchers suspect that both genetic and environmental factors may play a role in determining who will develop the disease. The current theory is that the disease is triggered by an environmental agent that could be bacteria, a virus or xenobiotic (a foreign chemical substance found within an organism). Research has shown that people who have a sibling with PBC have a 10x higher risk of developing the disease meaning that there is likely a genetic susceptibility that may be inherited. While genetic studies have linked several genes with the development of PBC, Dr. Mason’s research group has been working on the idea that primary biliary cirrhosis is in fact a form of viral cholangitis and that ongoing antiviral studies will lead to the development of novel therapies for patients with PBC.
"PBC is a rare disease," says Dr. Mason. "So we need to coordinate research activities looking at the cause and natural history of disease. We also need to investigate what interventions help prevent the progression to transplantation and then help to prevent recurrent disease in transplant recipients. I believe that we should focus on treatments with the potential to prevent disease progression, such as the ongoing antiviral studies and also the use of agents that enhance bile flow."
Dr. Mason is thankful for the CLF grant and hopes to continue down his research path. Research has led to many discoveries and treatments, but there's still so much to be learned.
"Liver disease knocks down patients in the prime of their life. Researchers have risen to the challenge of finding new treatments for hepatitis and other chronic liver diseases but we still have a long way to go before we can prevent the majority of patients going to liver transplantation," explains Dr. Mason. "There is a misconception that cirrhosis is due to alcohol abuse but this problem affects the minority of patients that we see and care for. More funding would directly translate to helping those young patients with poorly understood liver disorders from progressing to the point where they need a liver transplant."
Thank you so much for posting this!! What a breakthrough!!! I googled it and see there is a good explanation at this link:
University of Alberta Faculty of Medicine & Dentistry. "Researchers wind up a 40 year old debate on betaretrovirus infection in humans." ScienceDaily. ScienceDaily, 19 February 2015. <sciencedaily.com/releases/2....
If you google the work "betaretrovirus" - there are lots of studies - all pretty complex science.
It is very significant that PBC now appears to be due to a virus - hopefully anti-viral treatments can start to be developed. I hope the PBC Foundation picks up on this!
Thank you. Good news x
Interesting reading thanks 😃
This sounds hopeful - good to know there are learned people working hard on our behalf
Interesting reading, lets hope the reasearcher gets the funding to continue to a controlled trial of antiviral medication and it shows what he is looking for, success in either slowing further progression in conjunction with urso, or if loss of virus equals loss of disease. What a brilliant thought.
This is amazing! Thank you for sharing.
Hello smokylake.
Having read the article that you put link to, I have to say I am not fully convinced.
If this 'betaretrovirus' is responsible then I am expecting at some point for a doctor to perhaps do some check (via blood I imagine?) to find out if a certain spectrum of PBC patients do in fact carry this said virus.
I think it has to be known where the virus could perhaps have originated from and whether it is one that can burn itself out like a lot do (think the common cold that is said to be a virus as opposed to an infection) or whether once you have you are stuck with it (like someone with the herpes virus that is said to cause cold sores for eg).
I don't fully understand the article but I am now puzzled as to where the antibodies fit into this with PBC. I am one with PBC that was found to have a high titre of the anti-mitochondria antibodies that gave me a diagnosis of PBC back near the end of 2010.
My theory has been for some time now that the only way forward with PBC is to find something to destroy the antibodies (AMAs) which in turn will halt progression of PBC in its tracks but this now doesn't somehow correlate with the mention of a virus.
I am sceptical about certain things and research and medication testing can take a long time and then at the end certain other things can be found that weren't accounted for during the initial research and testing.
I do believe that a lot of viruses have been man-made by accident but only time can tell what they can unleash. I often wonder for myself if having the hepatitis vaccinations whilst working in a medical environment was a trigger to PBC as I certainly did not have PBC I suspect when I started the job but 4yrs later I started to itch and was said to have probably had PBC 'a few years' by the hospital consultant I saw. I know when I mentioned the vaccinations (I had a course that took months to complete) the hospital consultant didn't respond to my thoughts.
But at the end of the day if there is eventually an end in sight for patients with PBC then I am all for it, 'keeping an open mind' as the saying goes.
The one thing that I am finding is the mention of PBC as being 'rare condition'. I think over 4yrs on from my diagnosis, I am of the way of thinking, I don't think it is such a rare condition anymore, it is something that is little heard of as it isn't overly-common.
Hi Peridot - I find it very interesting that you mention that you were diagnosed after working in a medical environment. I began working as a health care aide in 2005 and was diagnosed in 2009. I moved into an office type position in 2008, but still within health care.
I am hoping to get some further clarification to this vein of research when I see my specialist in May.
Hello smokylake.
Yes it does sound a bit interesting that I worked in a medical environment (I'm not a nurse or did admin - I was the practice cleaner but worked in surgery times round everyone and was trained to do certain other tasks with protective gear (ie changing empty yellow waste bags)) and that I developed PBC. I started itching the following year after I had finished to take on a completely different job (retail managerial - I've been a bit of a Jane of all trades really, started out in clerical work after leaving school).
I am still dubious about the hepatitis vaccinations I was recommended to have due to the environment. I did have the course from when I started. If it might have been this that set PBC in motion I think it is a case of anyone having these vaccinations, their immune system can just ride over certain things, others might not be able. Like this with a lot of things healthwise, some get knocked down with 'flu for eg., others aren't prone or get over it quickly.
Be interesting though to find out in future if there is one connectin between everyone who develops PBC. I know I'd be first in the queue to be informed!
Hi peridot - apparently they have already documented that the virus is found in the lymph nodes of approximately 75% of subjects with established PBC. I suspect that there still would need to be a genetic predisposition for progression to PBC, but I'm not sure this has yet been clarified.
Hello dianekjs.
Just seen your posting and still a tad indecisive on this. If this virus exists to me for a definite connection it would have to be something that everyone with PBC has had and not just so many percent.
I know it is said that in PBC not eveyone shows the AMAs but a biopsy in that case does show that that person has PBC due to the cell changes within the liver. From this I deduce that everyone with PBC has that same criteria if they were all to have a biopsy (I never have).
I think that there is something else that is perhaps a trigger so until then we go on wondering.
Thanks for your thoughts. I think that they have pretty conclusively established a correlation, but not yet causation. A viral trigger has always made the most sense to me, so I am following with keen interest and an open mind.
I agree with your line of thinking dianekjs. The viral trigger makes sense, and I was also leaning toward genetic pre disposition to autoimmune disease. I have a brother with hemochromatosis.
It's interesting here that 2 of the commenting users used to work in Medical Env. before they developed PBC. I think this and similar informations are very valuable inputs to the Researchers that are looking for a link between a possible virus and PBC.
Until reading the link posted by dianekjs few days ago I was also dully believing that PBC is an "autoimmune" deficiancy, whatever that means. Body attacking itself without any given reason. So, perhaps there is a Reason as the Researchers also doubt.
If they will be successfull in loacating the Link then this I think will be the foundation for a real cure for the disease.
Current Thearapies with Urso and next with OCA (and possible ongoing research done by some Biotech companies involved in molecular level) are not a real cure but a way to stop the destruction. With these therapies AMA won't be negative and probably body will keep attacking the Organ.
As I asked in my other post to Dianekjs, why the Virus only or mostly affects women, only explanation can be a "genetics". But, there must be some(at least one) other factor present that triggers the behaviour of the Immune system.
The thought of what causes PBC and what can cure it is amazing. I don't think we can decide on our own that it is not correct. But the researchers do what they do best.
Have always thought my pbc was triggered after a tummy bug o had in spain whilst on holiday. Will be v.onterested to see where this finding goes?cazer