primary billary chirosis

[binlid]

hi i have today been 99 percent been diagnosed with primary billary chirosis,got to have some more bloods and liver scan,been given some tabs to take urosomething acid any info would be gratefull ty

[Yarnie]

Hi, I had PBC which was left untreated for 10 years. As a result the disease progressed very fast, 3 years ago I had a transplant and happy to say I'm now very well. My case was extreme as many patients will live with PBC and never need a transplant.

My advice would be, take meds make sure you rest when you need to but most of all tell your doctors everything. There is a charity called the PBC foundation, they are an excellent support net work and send out regular news letters. Although it's a scary time, look after yourself and allow others to help you. I hope this helps, wishing you good luck and good health.

[Singsing]

Hi, I have PBC and take 1000mg of Urso a day. I take one tablet in the morning with breakfast and the other with my evening meal. So far (touch wood) the Urso is keeping my PBC under control. I have 6 monthly heptologist visits and bloods taken and annual liver scans.

[binlid in reply to Singsing]

thank you sing sing xxxx i have to take 1500mg

[GrittyReads]

Hi,

Try not to worry, PBC is much more understood than it used to be. You will get lots of help and advice on here.

However, there is also a 'PBC Foundation' which is a charity for the support, advice and training of any one with PBC and its advisors and volunteers. It was set up by the founder, when she was diagnosed with PBC over 10 years ago. The PBC Foundation has its own website on this 'Health Unlocked' site, so if you search in 'communities' in here you should find it, or just Google 'PBC Foundation'.

I would not look on the general website for information on PBC, as most of what is out there is either out-of-date (and often wrong) or it is complicated research papers, that I guess you don't want or need just yet.

Meanwhile, have you seen an actual liver consultant (a hepatologist), or a gastroenterologist, or just your GP as yet? It's best if you see a hepatologist, and if you can find one near you who specialises in PBC even better, as it is not a common condition and some GPs, and even consultants, don't know much about it.

However, you can get a really good DVD on PBC from the British Liver Trust (ie on this site) and if you click the link to them at the top of this page, you will go to their website and be able to phone or email and ask for info and the dvd. Also, if you contact the PBC Foundation (again, find their site on here, 'Health Unlocked' and then follow the links to phone or email their advisors) have loads of advice and info on their site, and if you join (it's free) you get their 'Fact-file' about PBC, which is amazingly helpful.

Above all, try not to worry, and treat yourself, have fun, do things that make you happy (but maybe not involving alcohol), as stress is the worst possible things for any autoimmune condition.

Take care, hope this helps.

[slck]

PBC is an autoimmune condition that has no known cure. My son has a similar auto immune condition PSC (Primary Sclerosing Colangitis). He was diagnosed over 2 years ago and is successfully treating his condition with a combination of diet, vitamin/supplements, and Low Dose Naltrexone (LDN). He has also recently started URSO. His liver function values and inflammation values have all returned to normal levels. I would urge you to research LDN (Google LDN Research Trust and read the information on their web site, and follow lots of their links to other resources, including Dudley Delaney's web site, and Dr. Burton Berkson, who has books on LDN and Alpha Lipoic Acid (ALA), and has had good success in treating auto immune condtions). Dr. Berkson's books outline a regimen of vitamins and supplements that help to improve the body's immune systems, and detoxify various organs, including the liver. Diet would probably include elimination of alcohol, gluten and dairy. Improving immunity and detoxification would include ALA, glutathione, CoQ10, N-acetyl cysteine, B vitamins, milk thistle and selenium, among others. LDN is the most important, however, because it helps to re-regulate your immune system, and has the potential to bring it to normal function. Reading about URSO, while helpful to address some symptoms, you will probably find that it does not appear to do anything to help eliminate the causative condition. If I can help to point you toward other resources and information about any of the above, please let me know.

[binlid in reply to slck]

ty sick