Just been reading the info on the Canadian PBC website and came across some advice one of their newsletters (Vol 1 2014). It reinforces the article Peridot posted a year ago. A small paragraph in an article titled 'Fibrosis in PBC' by Dr Angela Cheung says in answer to the question 'Is there anything else I can do to help my liver?'
'Believe it or not, drinking two to three cups of caffeinated coffee a day has been
shown to help decrease or stabilize liver fibrosis. Milk thistle, on the other hand, has not been shown to be helpful.'
I realise I'm probably finding this out after everyone else has known about it for ages but if there's anyone else who's only recently started digging for PBC information, it might interest them. The slightly annoying thing is that it took me years to wean myself off coffee and now .... maybe I'll try it & see how it affects my insomnia ....
Written by
badpiglet
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Well sometime last yr I posted on this site with an attachment (picture) regarding coffee and how it is supposed to be good for the liver if taken in a small dose (ie around 2 cups a day apparently) as you have already pointed out.
I've never been an over-user of coffee but I have stuck to a cup after breakfast and also one before the evening meal every day. Coffee is supposed to be an anti-inflammatory apparently. I buy either decaff or caffeinated as I look at it this way, a bit of caffeine in 2 cups isn't going to be of any significant problem with having PBC plus it probably does give you a mild kick. I find using ground coffee in a mokka pot good. I did once read that it is best boiled in one of these pots.
I still go with quality over quantity myself and I really do think that majority of foods and drink (except alcohol) are of no problem with PBC if you partake sensibly. I didn't have any alcohol after my first abnormal bloods (the LFTs) back in early 2010. I was never much of a drinker prior and it doesn't bother me. I also think that if we were to consume alcohol even if a few glasses spread over a week say, come the LFTs I am sure they might come out slightly higher than they would if we didn't consume any. This is my theory but it really is each to his own. Said to be safe if you drink alcohol sensibly and you haven't got cirrhosis but I choose not to. (I did have a 'thimbleful' of whisky in a cup of tea at Christmas as I live in a cold and draughty house but it was just the one and probably be the festive season again before I do if I did.)
I also don't take any medications myself, prescription or over-the-counter (OTC) except for the urso.
I did have a go with milk thistle during 2012 and 2013 to see if it made any difference to the LFTs. I did think at one point it was but then didn't get such a good result the next time so it left me in doubt. I concluded for myself it wasn't making much or any difference at all to how I felt or the LFTs. Maybe due to the UK regulations that are in force now for certain herbal products. I noticed the milk thistle I originally bought was higher by mgs and also cheaper to buy but after regulations came in, much much reduced in mgs and the cost was quite astronomical by comparison. Regardless I decided milk thistle wasn't for me.
I don't drink coffee in the evening. I switch to red tea that is caffeine-free as if you struggle to sleep - I do due to itching at night - plus red tea is hydrating as opposed to dehydrating that coffee and also black tea are.
I do think that it can pay to be more wary of certain things now we have PBC as to me every little we can do that might be beneficial could help us keep less problematic over the years.
I do not drink coffee and read this too, however I have high blood pressure and not sleeping very well either. I was thinking of maybe trying 1 cup in the morning but not sure if my stomach can handle it.. And probably not good for the other stuff too.. Very torn as well
I find for myself with having PBC now that certain things are best partaken earlier in the day. I found before PBC diagnosis 4yrs ago that I can eat like a horse at breakfast time, eat well at lunch but then come the evening meal, I often struggle to manage it all. I don't eat anything following the evening meal, find it works better for me.
I rarely sleep all night, wake up a few times but also I am going through the menopause so tend to find odd nights I feel hot which in turn then makes me feel that much itchier. But at present I feel I am doing very well and it's not debilitating me in any way as yet.
I do love my coffee. My lfts were good last visit but would presume the regime of medication is the reason for that rather than the coffee, however knowing it's not hurting is good enough for me. It's my only vice nowadays though I did have a glass of wine New Year's Eve x
Yes, definitely try it in the morning not evening. However, seems I'm permanently drinking & grazing in the daytime just to avoid the evenings.
Will hunt out & try red tea, thanks Peridot.
I also love my coffee and could drink it at any time , but have recently moved to decaf in the afternoons, as I wondered if the caffine was adding to the sleepless nights that I seem to suffer from for no apparent reason. I will try the red tea though as I suffer sjogrens and need to sip drinks frequently so maybe the hydration will be better for me.
Seems like you just described "myself" having sjogrens and pbc as well. I haven't been able to sleep for years with no real explanation. I am wondering if you take anything for Sjogrens.
The only thing I was offered is saliva pastlies which I get on prescription, or sugar free sweets or gum.
The dry mouth is the main problem I seem to have a constant lemon/salty taste in my mouth that won't go away and I find the sugar free gum recommended by dentists is the best thing for me.
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though I did have a glass of wine New Year's Eve x
Liver not good after stopping Urso 
Which blood work and/or criteria was used to diagnose your PBC?
How long were your liver enzymes elevated before diagnosis 
Elevated Liver Enzymes - Positive AMA
Liver transplant at Leeds1
