VickieBoechler, thanks for th link to Sjogrens, that was a great article and lots of information. Surprising that so many of the symptoms sounded like PBC, fatigue, brain fog, etc.

Although I am mostly symptom free, I do occasionally have dry mouth. I find a sugar free hard candy and quality lip balm does it for me. As a side note, I do not have the itching problem some speak of.
Lew

That’s a very significant increase and I would be concerned too!!!! That’s not just because you are aging!!! Or is it ageism?

@A myPBCteam Member my ALP has levelled off about where yours has too.

In the past they used to be happy if your ALP was under 1.67 x the upper limit of the normal range (ULN). However now modern hepatology has shifted its thinking. The old idea was ok in the past because there weren’t second line therapies to keep pushing the ALP down if it plateaued - so in that context under 1.67 x ULN was considered ‘good enough’ but of course damage was still taking place. Nowadays with second line therapies available to push ALP further down into ULN range they are starting to be much more ambitious and aspire for full normalisation of ALP as a goal - so that is at or less than 1X ULN. That might explain the difference in their positions 🧐.

My gastro says she is happy cos it’s under 1.67 x ULN - however the top liver specialists who gave a second opinion on my biopsy prefer that I take a second line therapy to get ALP under 1x ULN - and that is the goal I’m comfortable with too! Less = damage better long term prospects.

Seems the outlook is shifting and those who are at the top of their game are making these changes / decisions and those who are less in the know are more strictly following the guidelines that 1.67 is good (that thinking is now a bit outdated in relation to where the top heptologists want the field to be heading, and as such are pushing it in that direction - the guidelines will catch up later!).

You should feel free to have your opinion included in the goal they set for you and ask for them to be ambitious in aiming for normalisation if that’s what you wish for.

It’s so important to be informed and engaged cos so many care providers aren’t necessarily up to speed. I have had to correct my gastro on what my care should be five times already and I have only been diagnosed 7 months! If I wasn’t informed I wouldn’t know and I’d be getting substandard treatment…. So annoying. But praise be to the PBC Foundation for all they do educating us and to Professor David Jones and his great book PBC The Definitive Guide for Patients with Primary Biliary Cholangitis: 2026 Edition - without which I wouldn’t be able to correct my gastro on her flawed thinking!!!

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A myPBCte...

I have experienced dry eyes for some time now, just figured it was dry eyes, so at my ophthalmologist’s advice I use otc eyedrops. Lately, I’ve noticed my eyes tend to be drier and my mouth seems to be dry, as I am constantly drinking water. I have been wondering if I am experiencing sjogren symptoms. I will be adding this to the list of questions I’ll be asking my hepatologist at my next appointment.
I love that this group shares so much of our experiences and information to help each other.