Advice please πŸ€”: I am currently on 1000mg a... - PBC Foundation

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Advice please πŸ€”

I am currently on 1000mg a day of urso for PBC,

My PBC isn't caused from alcohol as I am a non drinker , however I have 2 family weddings within a few weeks of one another and I would for just on these 2 occasions like to toast the happy couples , is drinking alcohol going to cause me problems or do I just avoid it at all costs ?

Any advice is valuable so thank you all in advance .😊

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PBC is not alcohol related. My doctor had told me that an occasional drink is fine. I have noticed that I do alright with one drink, but I feel queasy with a second one.

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Thank you 😊

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So glad you started it reply with PBC not alcohol related , wish the whole world knew !! My consultant also said the odd drink was fine , so for 20yrs raising my children I didn't drink or go out much (money was tight ) my children grew up my circumstances changed and I found myself with a social life ! To then be diagnosed with PBC and my consultant said eventually I wouldn't be able to tolerate alcohol, how right he was I've had PBC for just over 5 yrs and over the last few months my tolerance as become really low - 2 drinks are my limit I push for a 3rd and it wiΔΊl just come up along with the other 2 and that's fine I can live without it . Just wish I could give something up to stop the severe itching - the baine of my life !!! πŸ˜”

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Hello Rebecca67.

I only drank 24th December and special occasions pre-2010 (diagnosed with PBC December 2010) and always been one of these who wasn't that bothered.

PBC is nothing at all to do with alcohol.

Since I started itching early 2010 and then was diagnosed with PBC I didn't have any alcohol. Two years ago when my husband and I went away on holiday (UK) I had a half pint Guinness when we were out. Can't say it did anything untoward to me with having PBC. Of a rare occasion since I've had the odd glass of Guinness (ie my birthday a few months ago) but don't have anymore.

I was at a wedding only last weekend, my niece's. I didn't drink at all and was quite happy to just have a standard Indian Tonic Water with a slice of lemon. You could always drop something like that in a wine glass if there is going to be a toast to the bride and groom. You don't have to drink alcohol. Everyone at the less formal wedding I attended, the afternoon receptin was a case everyone just toasted the bride and groom with whatever glass of choice they had at the time. There was no champagne/wine.

I used to get hung up when I was first diagnosed with PBC about social occasions and the fact someone always asks you what you want to drink and if non-alcoholic tend to get bit of a frown I found. Then as I went to few occasions, christening and a few funerals I just asked for what I wanted, something non-alcoholic and just say I am not drinking. I don't say to strangers I have PBC nor really family (they know, they are not wholly understanding of what PBC really is), jsut state I am not drinking. I sometimes have to think to myself had my late father been alive he's have said to me, "One won't hurt". I can honestly say that I doubt it will. It could be very well different if someone is in later stage of PBC but to me sometimes avoiding everything you can think of (I still use a hair dye several times per year for eg) might as well not be living!

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Think I am only asking if taking urso interferes with alcohol .. didn't want to become un well just for the sake of a glass of champagne . But at the end of the day it's not worth any compromise in my opinion .. if in doubt ......

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Hello again Rebecca67.

Reckon you be safe with the urso and an odd glass of alcohol. I say alcohol is common sense with PBC. I wasn't advised to change anything dietary when diagnosed and I did ask. I think personal choice myself.

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Yes I think your right peridot πŸ‘

In the beginning of this journey I thought I will be so good for example exercise more , avoid all fatty foods which I have as have found out on each time I have had to increase the urso ,,,, oh boy did I know about it lol , couldn't leave the house !!! But like another PBC sufferer has commented if you stop everything that you have had then you may as well pack up !

Thank you 😊

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Hard part is lifestyle and peer pressure to drink, eat fatty fried foods, meat, processed foods, salt, sugar

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Urso is a synthetic bile, you will be fine with glass of champagne..as you know pbc is an autoimmune disease so any foods or drinks that metabolites from liver effects pbc..

I still drink every week but in moderation..I try not to drink more then 50oz and after drink I drink lots of water as well..keep in mind alcohol may effects differently on the person who's liver has already started cirrhosis, mine is fine so far..

Overall alcohol is not good for health if you can just avoid itπŸ‘πŸΌ

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I was a social drinker until three years ago. I know some people say that it won't hurt you but I say that if we already have compromised livers why do we want to place more stress on it by drinking alcohol?? The last time I drank I was at stage 3. It was the night before my 40th birthday & I had lost a dear friend earlier that day to a car accident. That, on top of turning 40 done me in. I bought my, at the time favorite, Whiskey. Woke up the next morning feeling really really awful with the hangover plus another year older. I thought to myself, what in the heck am I doing?!?! I knew my health was not good & I was also wondering why do I do this to myself, Im so over it haha!!! That was three years ago on March 1st. Not another drop of any alcohol since. But I will say that my GI & my heptologist said that that was probably the best thing I could have done for my health was to completely stop drinking. I also say that you do not need alcohol to make a toast to the happy couple. It's the words & how heartfelt they are that matters. Not what's in your glass πŸ˜‰.

Take care & stay strong❣️

Shannon

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I agree, good will toward happy couple is the important part to focus on, not whether you get your glass of champagne

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I would skip the alcohol as it might stress my liver. My doctor advised no alcohol.

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i was told the odd one wouldn't hurt, but to stay within the recommended limits. I did have the odd drink a couple of years after dx. But what I did was to have a peach snapps with lots of lemonade, not sure of the alcohol content but felt it was probably not as strong as vodka or whisky and one glass lasted a long time.

I don't have anything with alcohol now, there are a few alcohol free wines available if you felt you needed something for the toast, that is alcohol free.

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Hi candy thank you.

But as I don't drink alcohol it seems pretty pointless exercise just to make me feel that I have fitted in , it doesn't bother me to be honest , I just wanted to see if anyone had any problems with alcohol and urso.. but if it's not broke , don't fix it ! I don't want to become ill for the sake of a couple of proseccos πŸ˜‘,

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Hi PBC has nothing to do with alcohol. I still drink, and I take Urso, it has no effect at all. The contraindications in the Urso packet don't even tell you not to drink. You won't become ill if you drink a couple of proseccos and take Urso.

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For me 4 oz per week, if you miss a week 8 is fine. I've had pbc for over 20 years, enzymes go up for lots of different reasons, alcohol is only one of the reasons. Get off American diet of sugar, salt, additives, pesticides and slothenlyness like your life depends on it, it does.

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Point 1 no one's PBC is caused by Alcohol. Point 2. My Dr says I can have small amounts of alcohol without harm. The reason I don't have any is because how ever small the small amount is it makes me sleep whilst it processes the poison, I'd rather get up in a morning & enjoy life. We are not all the same I believe some people can tolerate it in small amounts, listen to your body xx

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For what it's worth

It depends on stage of disease and whether alcohol makes your symptoms worse.

I would have non alcoholic drink .and it does not take from fun

It's a quality of life issue too so up to you

Enjoy

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After reading everyones post I feel an occasional drink wont be a death sentence. I do feel you need to make judgement based on your bodys symptoms. Example some days my body doesnt tolerate my Urso. I get nauseous from any type of food. Ive found beeing in to much sun makes me feel like I have a massive headache or my blood pressure is up. Generally its very good so I think this is from the medications Im on. Of course I wouldn't drink if my body is giving off signs.

Hope this helps

Connie

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Yes it does Connie and thank you .

Your right in what you say here and it's down to you the individual, so like you I have good and bad days with food etc and I pay "ten fold"! So it's not worth risking having a drink for simply that reason , many thanks x

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hello what is PBC?

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