Does anyone know how long you can have PBC ... - PBC Foundation
Does anyone know how long you can have PBC for before it is diagnosed? Can you be born with it and it just needs something to trigger it?
I have no idea on this sorry.
I suspect no-one will but I thought I'd ask the question. Always the optimist. X
I was advised by the gastro to have my 3 children (all teenagers ) tested for it. Thankfully none of them have a positive AMA but I dont know whether thats something that might develop later or hopefully not. My liver doctor told me the only thing they truely know about PBC is how to diagnose it. Hopefully in time we will have more answers.
I have no idea either but I was told by my GP when I was first diagnosed not to worry about it too much that I could of had it for years, this did not install any confidence in the medical profession on what they know about PBC, and they seem to know no-more today than they did then, I get so depressed as no-one seems to be doing anything about it.
i do not think even the doctors know the answer to this question. i Did ask my dr (when i had a liver specialist) how long each stage is. - she said (and this was Dr Melissa Palmer, the author and specialist) each stage is about 10 yrs, unless we take real good care of ourselves and the medicine works to truly slow down the progression - i was diagnosed in stage 2 in 2005, 7 yrs ago, and i am NOT in good health - a few yrs back dr palmer told me i'd have about 15 yrs before i could need a transplant. - que sera', sera' -- not going to freak out over it, it happens when it happens - i could die tomorrow in a car accident - sorry, i didn't answer your question -- i can't -- (i am 54 now)
No body has bothered to tell me what stage I am at but I go to see the gastro consultant next month, he is my liver consultant as well as we dont have specific ones out in the backwoods,
A liver biopsy will determine that. Tell them that you want to know what stage. My first one was not put into a stage, so I ask for the second to be and it was.
I was told PBC is an Autoimmune disease effecting the Liver. Allergies are similar, I have always been allergic to penicillin, so maybe I have always had the auto immune disease PBC............ I was diagnosed when I was 49.
Not sure if that answers the question but that is how I look at it.
I have no idea what stage I am at, my liver seems to be fine at the moment, maybe the stages are a result of the condition the liver is in and the LFTs.
Take care
Lou
As far as I know the only way to stage PBC is by having a liver biopsy.
I have PBC and Lichen Planus both diagnosed with a biopsy...apparently the only way to get a true result of which stage you are at.....I was interested hearing of you having an allergy to penicillin.....I have been allergic to penicillin since childhood and also have many unexplained allergies .....A biopsy taken approx. 7years ago confirmed the condition so have been on URSO and other medications for itch etc...since. Our family has many with autoimmune conditions....I am 67years old and live life to the full........A few days on the go...a day to rest.....then off again.
My consultant told me, when I asked about the likelyhood of my children developing PBC, that he would test them at 18yrs old. The AMA antibody can be present from birth but can also develope during adolescent. But that having the AMA antibody would not necessarily mean they would go on to develope PBC. Hope that helps?
I did have a high presence of AMA when I had the blood test when suspected I had PBC.
It appears the norm today in the medical profession to diagnose PBC with this blood test altho' apparently you can have PBC without a high presence but from what I have read a liver biopsy is normally carried out when the AMA blood test isn't conclusive.
I've not had a liver biopsy and have no desire to do so (would have been different perhaps had I not had the AMA positive one) but from your scan it is apparently possible to gauge the stage.
I saw some daytime programme prior to my diagnose and it was covering obesity and alcoholism. The 2 guys (one quite weighty, other alcoholic) had live scans and the weighty man had signs of a fatty liver, the alcoholic had signs of cirrhosis. So that to me means it is possible to know tho' with everything I KNOW it isn't conclusive but also my view is that if one has a liver biopsy and a smal sample is taken from one side, given the liver sort of stretches across our middle, how would it be fully known if the sample covered every area of the liver?
That was my point exactly when there was a possibility of having to have another liver biopsy to diagnose the AIH. I asked if it would be taken from another area but was told that it would be from the same area. That made no sense to me because they would have the same outcome as the first. Biopsy confirmed PBC although I am AMA negative and through blood results AIH with positive SMA. My consultant told me today to concentrate on getting the AIH controlled and not worry about the PBC. X
I was wondering myself if it could be connected with hormones. Looking back since puberty I always struggled with fatique and concentration/memory loss and its gradually got worse over the years. Was diagnosed in 2006 but I think Ive had it for years.x
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