Not gonna lie, my head is still spinning since being AMA positive. I’ve recently had a fibro scan with score 4.7 which I believe is a good result.
Of course with the help of Dr Google I’ve read some positive info about being diagnosed early. However, I’ve also found some articles where if diagnosed at a younger age (I’m turning 45 in a few months) usually means the PBC tends to be more aggressive and more likely not to respond to medication.
Keen to know if others have experienced this?
Farah, it sounds like you're very early stage based on your fibroscan score. I believe that someone without liver disease would be expected to have a score under 5, so your score is great. I was diagnosed very early stage when I was about your age, 12 years ago. I'm still very early stage, with all labs in range and my last fibroscan around two years ago was around 4.7 (same as yours)--completely normal. I think people just get diagnosed earlier these days, so 44 may not be considered a younger age anymore (if it ever was). PBC is slow to progress for most. Historically, people were not diagnosed until they were fairly symptomatic (so they'd be older when diagnosed). Now, people get diagnosed well before symptoms in many cases, just because their labs were off. Hope that helps. It's pretty hard to wrap your head around this diagnosis at first. I'm at a point where I do think about it but I don't worry about it.
Hi Farah,
I was diagnosed not long before I turned 46 and I’m 48 now. Your Fibroscan liver stiffness measurement is excellent. My recent one was 7kPa, so within normal but a bit higher than you. I didn’t respond that well to Urso in the first year, but I also had a series of very stressful events leading up to and following diagnosis. I feel this may have affected the ability of Urso to work and is a much more likely cause than the age of diagnosis.
I think you are likely in a very good position as you’ve caught it early with a liver that seems very good on Fibroscan. They normally review Urso’s effectiveness in one year, so I wouldn’t be too concerned at this point as you are well-positioned going forward.
You do get used to it. I hope the itchy skin isn’t too bad.
Hi always go to Pbcfoundation.org.uk for best most accurate and up to date advice.. email or call . This is a charity lead organisation set up some 26 years ago . You will become part of a world wide family xx
Hi Farah, it’s always a shock when you get a diagnosis and it takes a while to come to terms with it. Like Perriwinkle I was diagnosed early many years ago and my liver is still functioning well on Urso. My Mum was diagnosed in her 50s before there was any treatment and lived to 75. As Gillrich says , go to the PBC foundation for accurate info. The British Liver Trust is excellent too.
thanks so much everybody…honestly this community is a godsend 🙏🏻 I’ve been on the PBC foundation website and I’ve also recently downloaded the app….thanks so much all.
Hi FarahS,
That’s a natural question to ask but there are confounding factors. For example, it appears that when and how we discover our AMA/LFT status is largely chance, if we’re asymptomatic. That goes against the ‘worse outcome if diagnosed young’. Also awareness is higher and more testing done now than, say, 20 years ago when I could have been ‘diagnosed young’ since I had the markers then but nobody told me! Of course receiving treatment sooner is a big bonus, so that’s good too. And yes 4.7 fibroscan is well in normal range, so great!
From reading research papers, it seems that what may provide additional clues to our potential future PBC journey, if we want them, is a wider autoimmune assay that includes ANA etc.
What is clear is that medical science is at a very exciting stage, with fantastic research going on and dedicated doctors and nurses, and the wonderful PBC foundation, all there to support us. You’ll never be on your own with this. x
Hi Skypony,
Thanks for your lovely message. I am actually AMA positive and ANA positive.
when you say additional clues to our potential PBC journey that include ANA, what do you mean? Can you point me to the articles please?
Hi Farah, PBC is so complex and variable that only your consultant can weigh up all the factors for you, and this will take time. They will (or should) do an autoimmune assay among other tests and explain all the results. I’ve dabbled in reading research occasionally, but I want to emphasise that finding a consultant I trust has made more difference to me than anything else. That’s my best tip!
And well done for being so fantastic at advocating for yourself!
Stay away from the internet!!!! Just talk to your doctor. I was diagnosed at 49, and I’ve been on Urso (med for PBC) - and I’m perfectly stable. I need to eat a bit healthier, and I did decrease alcohol, although I do enjoy a drink socially. You are not going to die from PBC!!!! It’s not a death sentence! You are not alone, feel free to reach out 💕
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