Name change

[Shazbarr]

Does anybody know if they have changed the wording from cirrhosis to cholongitis as I know that they were trying too & on seeing my consultant on Thursday she believed it has now been changed, can anyone confirm this?

[PBCRobert Partner]

It was confirmed at EASL's International Liver Congress in Vienna that it *will* become known as PB Cholangitis.

There are a couple of hoops still to go through before it becomes official but we are very much on our way and we are anticipating the official change to be this year.

I imagine there will be a brief period when both names are used but we should progress through that quite quickly with a strong awareness campaign.

Yours,

Robert.

[Shazbarr in reply to PBCRobert]

Thanks for the update, hopefully we will be able to get life cover & insurances after the change!!

[Hidden]

Hello Shazbarr.

Check this out that I was sent notso long ago by another poster.

pbcfoundation.org.uk/Home/B...

PS As much as the name, the C part is being changed, I personally didn't agree with the new one. I say this as I go with my first thought when the 2 variables were originally suggested.

[Shazbarr in reply to Hidden]

Thanks for that, I'll just be glad of the cirrhosis being changed as people always ask if I was ever a heavy drinker!!!

[Hidden in reply to Shazbarr]

Hello again Shazbarr.

To be honest I gave up informing people I had PBC as in the full terminology due to the 'cirrhosis' part of it. At my old GP surgery the nurse I saw for bloods, on 2 different occasions she asked me how much I used to drink! I thought she was ignorant the second time as to me if I was a nurse and there was a patient I didn't know what their condition was, I'd be inclined to want to find a bit of information out.

I simply tell anyone who I feel inclined to do that my body started producing its own antibodies that then attack my bile ducts causing bile leakage into my liver and then it causes a few problems.

Most of my family presume that the urso I take is a sort of cure-all. One family member thinks it is nothing! I hope that over the years it remains as stable as I seem to be now after being diagnosed for over 4yrs and itching for over 5 and that eventually it has been something of a more trivial nature.

[Shazbarr]

I feel a fraud as my itching is under control but due to my bloods the consultant wanted to do a liver biopsy which I begged not to have, instead she sent me for an mri & fibro scan both showing that my liver had slight scarring, she also tested me for hepititis which came back negative, so she's given me another form for my bloods & I will see her next year, I'm probably one of the luckier ones that as long as I'm taking my urso I don't have any symptoms

[Hidden]

I won't be using the 'new' name. I will continue to use Primary Biliary Cirrhosis, simply because I have moved into the cirrhosis stage, as many others have, and Primary Biliary Cholangitis does not reflect our condition.

As far as Insurances etc. I can't see the name change making any difference, it's still a 'liver' condition and that is what the Insurance companies will focus on. But, it will make things more difficult for those in the later Stages trying to access (or being reviewed) for Social/Welfare Benefits.

[GrittyReads in reply to Hidden]

I agree about Insurance companies. Most of the reputable ones have hugely up-to-date databases, that accurately reflect the major 'risk' factors that the TI etc companies are interested in when trying to gauge how much of a risk we are to them. Remember, they are only out to make a profit!!

True, I've encountered some incredibly ignorant telephone assessors in the past, who speak before they think, and more importantly before they check their screens - even ones where I have had to spell P ... B ... C in its entirety. But now, even if the phone people don't actually know anything medical, they have usually finished typing in all of pbc before I've finished saying it, and then they lead me through pertinent questions.

Many of the aspects of PBC can be dodgy: could mean hospital stays. And I imagine it's more of a risk because it's not a common condition. Most holiday region hospitals will have people to deal with heart conditions, but I doubt if they will have liver specialists familiar with PBC - so we are seen as a risk.

My worst experience has been with hospital nurses, who hear only 'cirrhosis' and immediately assume it's drink related. Now, in such cases I start by saying, 'I have AMAs, I am at risk of an autoimmune condition that attacks the bile ducts of the liver .. etc' and discuss these stages well before I say the dreaded 'C' word.

[Hidden in reply to GrittyReads]

I always start the conversation with "I have an autoimmune condition that attacks the bile ducts............" Once or twice during the 26 years, since my diagnosis, I have been asked if it was alcohol related, and I have said "No, mores the pity, if it was I would just have to stop drinking to stop further damage, but alas, it's a progressive condition."

[GrittyReads in reply to Hidden]

Nice one! I'll have to remember that!

I tend to get a bit pompous, I'm sure it just riles them - though I did consider reporting one TI company to the Ombudsman when their (so-called) 'Health advisor' told me I could not possibly have had AMAs for nearly 20 years and not have varices.

I always mean to tape record them, but have not yet remembered - there's probably a law against us doing it! (Paranoid ...moi!?).

You take care and make sure you spoil yourself, and do all you can to cut stress.

Gritty xx

[PBCRobert Partner in reply to Hidden]

I wonder what evidence there is that PB cholangitis makes things more difficult for people in later stages trying to access social/welfare benefits.

The system allows for support based on your symptoms and their impact on daily life. Like many conditions condition there are different aspects to it- severity of symptoms, rate of progression, impact physically, psychologically and emotionally. These play a much bigger role in assessment than the name of your particular condition(s).

Yours,

Robert.

[Hidden in reply to PBCRobert]

Robert,

As the name hasn't yet changed, my theory that changing the word 'cirrhosis' to 'cholangitis', will have adverse affect on those applying for social/welfare benefits, can't be verified, but, as this website,

<nlm.nih.gov/medlineplus/enc...

shows, cholangitis is classified as an infection which can be treated and has a 'good' prognosis. Social/Welfare benefits can be difficult for some to access as it is, but if it is downgraded to an 'infection' which can be treated, and cured (cured being the operative word here), this can only make the process more difficult for those applying for financial assistance. Primary Biliary Cirrhosis is not an 'infection', it is a progressive condition, has no real 'treatment' (other than Urso, which at the end of the day, is only a supplement of bile acid) and can't be cured (at this point in time).

While the criteria you have mentioned above does play a significant role in accessing benefits, I still believe the name of the condition influences the outcome. The word 'cholangitis' denotes a temporary and curable condition, which in my view will see those who receive benefits having to undergo periodic reviews (very stressful for those who are ill), where as, the word 'cirrhosis' denotes a chronic condition which generally doesn't require periodic reviews (for me anyway, I'm in Australia and have had only 1 review in the 14 years I was on the Disability Support Benefit, and that was only because of a change to a government who wanted to stop those 'disability bludgers' routing the system).

[PBCRobert Partner in reply to Hidden]

Thank you for your reply, DianneS.

The link is a dead one for me so I don't know what it says. I can tell you, however, that cholangitis refers to inflammation, not necessarily infection. Ask anyone with PSC if cholangitis isn't potentially serious.

Cirrhosis refers to scarring and can be reversible in certain conditions.

I am aware that I cannot allay your fears. All we can do is monitor the changes and make our next advocacy campaign another one to fight for the betterment of people affected by PBC.

All the best,

Robert.

[Hidden in reply to PBCRobert]

Hi Robert,

Funny, every time I 'copy and paste' the webpage it becomes 'dead' so I've 'copied and pasted' here, sorry it's so long. It's taken from "The U.S. National Library of Medicine" site:

"Cholangitis

Cholangitis is an infection of the common bile duct, the tube that carries bile from the liver to the gallbladder and intestines. Bile is a liquid made by the liver that helps digest food.

Causes

Cholangitis is most often caused by a bacterial infection. This can occur when the duct is blocked by something, such as a gallstone or tumor. The infection causing this condition may also spread to the liver.

Risk factors include a previous history of gallstones, sclerosing cholangitis, HIV, narrowing of the common bile duct, and, rarely, travel to countries where you might catch a worm or parasite infection.

Treatment

Quick diagnosis and treatment are very important.

Antibiotics to cure infection is the first treatment done in most cases. ERCP or other surgical procedure is done when the patient is stable.

Patients who are very ill or are quickly getting worse may need surgery right away.

Outlook (Prognosis)

The outcome is very often good with treatment, but poor without it."

I know PSC is potentially dangerous, I'm not arguing that it isn't, what I'm saying is that 'cholangitis' (as described in the above article) can, in most cases, be treated quite successfully. PBC, on the other hand, cannot, it can only be slowed down, presumably.

In what circumstances can 'scarring/cirrhosis' be reversible? I have not heard that before, not that that means much, but, to me scaring is scaring, and the only way you can get rid of a scar (on the skin) is through plastic surgery.

[Shazbarr]

Thanks for all your comments & kind advice, my consultant was quite shocked when I told her I couldn't get insurance, she told me they should at least ask for a doctors report but I don't seem to manage to get that far!! I'm just hoping I live to the age of 55 and over & Parky can sort me out some life cover!! Ha ha