My consultant told me there was no harm in having one or two a week but I don't drink anyway.
I have chosen not to. I guess its all down to the individual but as we know alcohol isnt good for the liver so why make it cope with something it doesnt have to. Hopefully it might keep it working a little bit longer.
Hi there, As with everything alcohol in moderation will do no harm, some people with PBC find they can no longer tolerate it so its trial and error to find out. Enjoy.x
Hi I have a can or two at night,every nite.but that is all ,I was under the impression that once you need drink in the morning,then there could be a problem.!
My consultant said that if it wasn't a problem for me the it would be better if I didn't drink at all. I didn't ever drink very much so I only have one glass of wine if it's a very special occasion. I think the liver needs all the help we can give it so it's probably best to avoid alcohol if possible.
I hardly ever drink, just the couple at christmas, new year and birthdays if I feel like. But I haven't been told not to.
The last time I had a drink it was in May 2003 and I ended up in hospital!!!! I promise you it was only one gin and tonic but I have never touched alcohol since. It was after that episode that I was diagnosed with Scleroderma and Sjogrens and at the time I had what we know as a deranged liver function. Earlier this year I was diagnosed with PBC.
In 2003 I was told I should never drink alcohol again and to cut out caffeine too. So for the past 10 years it has been no booze, no coffee, no tea and no chocolate. I drink water. Boring, boring, boring but I don't think it has done any harm. I have very mild PBC with no itching to speak of. Since I started on URSO my LFT's are back to more or less normal.
I stopped even having the odd social drink which wasn't very often (never went out at night except on a very rare occasion all my adult life), after my first abnormal LFT early 2010.
Never been informed not to drink but I think a lot is common sense as we all know.
Personally I won't drink again and for me don't even think about it as never was a drinker prior anyway.
Now what does get me annoyed is the fact that as soon as there is some abnormality with the LFTs the automatic question is "How much alcohol do you drink?" I got asked on several occasions back in 2010 and I started to get annoyed very much.
Then that aside, after the diagnose PBC Dec 2010 I simply have to put up with my family around me just drinking the odd couple cans/bottles towards the end of the working week and over the weekend and hols as they go about their normality BUT it is the fact it does scare me somewhat having to perhaps eventually go to some important social occasion and everyone around me is drinking and some ill-informed person thinks it is all a joke when I refuse a drink.
It is bad enough currently having a family who don't really fully understand what implications PBC could eventually have.
I have been diagnosed for 8 years and neither of my consultants said I needed to totally give up alcohol. If I feel like a glass of wine or cider, I will have it. Never more than 2 and not every night. There are so many nice non-alcoholic drinks it makes it easy to go without although I find a little vodka goes a long way with a lot of fruit juice or other mixer. The thing you do need to do is whatever you drink especially if its a really acidic drink is to flush your mouth with water or have some cheese to neutralise the acid of juices and soft drinks so that you don't damage your teeth. Another side affect of Sjogrens.
Well, Peridot I would have to say that it just doesn't happen!
People these days in my, social circle anyway, just accept that I don't drink alcohol. I have been to business cocktail parties and weddings and the like and nobody ever turns a hair when I ask for a soft drink. There has been the occasional occasion when there was nothing for me, but one can usually find a tap and get some water.
Actually I have to admit here that I do get somewhat miffed on those occasions - what if I was a recovering alcoholic? Actually the only time there is nothing but alcohol or water is when it is wine that is being served. If there are spirits then there is always a supply of mixers.
I drink decaffeinated coffee and it is more frequently the morning or afternoon tea occasion when there is nothing for me. Even at funerals there is usually some fruit juice.
Wish I had your social circle! I can tell you that I have already had one 'incident' back in 2010 prior to diagnose when I was going thru series of blood tests, scan and then waiting for the first hospital appt where I got asked again what I was drinking. Given I do not drive and that already noted, I got what is probably the norm as a reply, "Well just the one won't hurt", even after I said I didn't want anything alcoholic.
I'm not someone who will readily say to anyone that I have PBC, in fact there are hardly any of my friends who know and the ones that do aren't in that circle.
I think part of it is that prior to starting with the itch in 2010 and then being informed it looked like I had a liver problem, I had that choice to take it or leave it and I felt a lot more confident in stating a definite no I wasn't bothered than I am now. I don't actually enjoy going out anymore even at the weekend if my husband and I take off a trek some place (not as frequent during he winter months but now the lighter nights are here in England, will enable us to do so once more), he likes to drop off in a pub in the country and enjoy a drink, I tend to find that tea or coffee served is pretty awful and I'm no fizzy pop drinker, never have been so don't find it that much fun at all. (Prior to PBC I might have partaken of half a Guinness or even a glass of port as never been a home drinker but I just somehow feel since 2010 I just don't want any alcohol.)
Yes it is hard sometimes. However I think now that if I had an alcoholic drink it would make me sick!! Even the smell puts me off sometimes. I know that I will never have a caffeinated coffee again since I did one day long ago when I thought 'just the one won't matter'. I thought I was going to faint I felt so horrible. I guess for me, the fact that I can't do much in the way of physical things any more means that I am not out in places where it is convivial to have a beer or wine. We do belong to a car club and on Sunday drives and things the others have a drink and I don't, but they all understand that I don't. As well I have to say that there are occasions when I wish I could have a Friday night wine with neighbours. That's life I guess.
Hi to you all, thanks for the answers. As I'm very new to all this I'm seeing loads of viewpoints which is really useful. I used to drink @ weekends, not huge amounts but a bottle of wine with my partner. Now I find I'm being more cautious. Apart from my partner I haven't toldanyone I may have PBC, its not even confirmed, but I'm pretty sure I have. I do think there is stigma attached to cirrosis and thought I'd just say I have an auto immune disease. I'm thinking back about things that have happened like twonasty bouts of diarrhoea last year, and being ill in the past when I've drunk a bit much, and its starting to make sense, maybe my liver couldn't deal with a bug or too rich food, and the amount of alcohol, which someone without pbc probably could cope with. Funny my docs never made any connection. I do have a reasonably "normal" life, going out and about etc, and luckily I don't suffer from fatigue. I do find early mornings tricky though, as I need to be near a toilet, so morning meetings are a problem. I do work flexi hours and freelance,so I can arrange my timetable to suit.
I have allowed myself a bailys at christmas, but other than that nothing. If we go out I like to drink non-alcoholic wine with my dinner.