Wine! I miss it!

[Stephanellie]

Does anyone drink alcohol ever after PBC diagnosis? CUrious. It’s my understanding I should never drink alcohol again.

[Ktltel]

Hello Stephanellie,

I was diagnosed last year "today". How I remember it well. 😳

I decided right then that I wasn't gonna do anything that caused my liver grief in any fashion. I have slipped up with food.... sugar, salt, once in a while, and that's bad enough for me. I feel it... slight twinges of pain upper right area of stomach.

I was never a big wine or alcohol drinker anyway. Occasional Strawberry daiquiri or maybe a Margarita whenever I made Mexican food or we went out for it. But, since last year I just haven't.

I'd say, if you are already experiencing PBC symptoms, please be very careful if you decide to endulge in it even just a wee bit. I know some on here have and they might share their experiences with you.

I just decided better safe than sorry. Did you happen to ask your doctor?

Stella ❤

[Stephanellie in reply to Ktltel]

THanks for your reply! Yes, I’ve spoken with my doctors. They say a couple drinks a month is ok. But, I haven’t done even that for months. I probably will give it up completely. I’d like to toast my kids when they get married! That’ll be about it. Just curious what others do.

[Hidden in reply to Stephanellie]

I drink at happy hour every now & then, just 1 drink a month maybe. Other times, I go to happy hour but only have club soda & cranberry juice.

[Hidden in reply to Hidden]

My doctor approves.

[4pjx__]

This is my story: Last February I went to the doctor thinking I had an ulcer or something. At that time I didn't know I had PBC. I was pretty much drinking 3 glasses of wine a night. My let's came back pretty high so the doctor said to stop drinking, which I did. The next week I went in for more blood tests and everything went down about 10 points but they were still too high. Long story short by May some of my numbers were going through the roof and that was 3 months with no alcohol. This causes me to believe that the wine was not the problem with my liver and I could drink if I really wanted to...but I don't. Being diagnosed at stage 3 severe fibrosis doesn't give me much wiggle room. My hepatolagist suggested that what I have is an incurable liver disease and it's not a great idea to drink. But I think I like to tell myself that I can have it if I want to. I guess it makes me feel like I have a little control.

I missed wine for several months. Sometimes I have a little taste of my husband's. It's not as good with out the buz, so why bother? 😉 Hahaha!

Best wishes,

Pam

[Ljane]

I was diagnosed 2 years ago. I occasionally have a glass of wine. My Dr said that would be okay occasionally! I have not had any problems or increases in my numbers.

[SharonM69]

My specialist said I can still drink in moderation, but I am early stages. The thing is I don't really drink unless I go out and then I drink alot. But I haven't been out since I was diagnosed, I am going on holiday next week and I will be having a few drinks.

[butterflyEi]

Hi Stephanellie

The hepatologist said that it is okay to have the occasional drink but to keep it within the guidelines. However having said that it seems it depends on how far advanced your PBC is and if you have other issues. Alcohol is of course something which has to be processed by the liver and if it is already stuggling then why make it work harder. For myself I was diagnosed early and apart from recent problems with the itch and a couple of other autoimmune disorders I am relatively well. I do have the occasional glass of wine especially at celebrations but I never have more than 2 in one night and I drink lots of water all the time.

best wishes

[badpiglet in reply to butterflyEi]

Agree with your comment Butterfly "if your liver is already struggling then why make it work harder".

The healthy liver can normally cope with drinking a small amount of alcohol. However it can only handle a certain amount at any given time, so if you drink too much or too quickly, your liver cells struggle to deal with it. When alcohol (a poison), reaches the liver, it produces a toxic enzyme called acetaldehyde which can damage liver cells and cause permanent scarring.

We're all at different stages with PBC, many have multiple conditions with some also impairing the liver, many are taking various medications that the liver has to cope with and in addition we all react differently to alcohol.

For me, luckily symptom free, I just try to listen to my body and I don't feel well even after 1 small glass, so most of the time I'm tee total. But I'll happily join in a family celebration and have a small sip. I already have so many 'can't' & 'don't' & 'must not' in my life that a little something in moderation makes my life better, more fun and more 'normal'. Would I still have a sip once in a blue moon if I was further down the road with PBC, probably yes, but no to a full glass.

So hard to say when we're all in very different places.

[Stephanellie in reply to badpiglet]

Thank you!

[Debbiem40]

I was diagnosed with PBC in 2003 and I have never in all that time been told not to drink! I've always been led to believe that diet doesn't have any effect on your PBC, but I do try to eat healthily and drink whenever I want one!!

[Ballymahon2 in reply to Debbiem40]

How are you doing now diane m you were diagnosed in 2003

[Ballymahon2 in reply to Debbiem40]

How are you doing now debbie m you were diagnosed in 2003 i have recent diagnosis and feel scared

[Debbiem40 in reply to Ballymahon2]

Hi Ballymahon2. I'm fine, no problems at all really. I have no itching, never have had, which is a blessing, I do get tired but put that down to being 48 years old!!! I do get achey bones, which I have mentioned to my consultant, but it has never been followed up, however its nothing I can't handle. I have been taking Urso for a couple of years and we're waiting for my next appt to see if its making a difference or not. So on the whole I am totally fine. It really is nothing to worry about.

[Ballymahon2 in reply to Debbiem40]

Thanks thats a great help when were you diagnosed with pbc

[Debbiem40 in reply to Ballymahon2]

In 2003 - I had blood tests after my baby was born and it was randomly picked up from the blood tests.

[Ballymahon2 in reply to Debbiem40]

You have it a long time glad you are doing well

[Hidden in reply to Debbiem40]

Wouldn't you know if it is making a difference already since you've been on it for a few years? I think doctor looks at alk phos?

Glad you are doing well.

[LindaVillanova]

My Dr said occasional glass is ok but I really havent bothered much- and yes I miss my wine. I did purchase the alcohol free stuff so I can pretend, LOL. My numbers still arent in the normal range (On OCA now so lets see how far they go down), so still quite cautious. I do not have side effects and had no issue when I had a few sips at my step-daughters wedding.

[KellyP0831]

When I was diagnosed by my gastroenterologist, I stopped drinking completely. I've never been a heavy drinker, so it wasn't really much of a sacrifice, but I do like to have a margarita or mojito now and then with dinner out. Once I started to see a hepatologist, however, he told me an occasional alcoholic beverage is ok. I am in early stage, and have no damage to the liver at this point, so I decided to let the doctor be the expert, and may have a drink if I go out, but refrain from having more than one. Take your doctor's advice, he or she will give you the best information based on your personal condition.

[Stephanellie in reply to KellyP0831]

Thank you!

[gwillistexas in reply to KellyP0831]

I too, am early stage with no liver damage. Like you, I’m not a drinker per say, but I love a margarita when we go to Joes Crab Shack. I’ve not asked Dr if I can have one yet. If he says yes, I probably won’t.

[Hidden]

Before every single apt at Mayo my Dr asks if I had alcohol and my answer is always the same. Stop asking please, I don't drink. Before diagnosis I may of had 1/4 of a small glass once or twice a year. I am not chancing dying of cirrhosis of the liver. That is supposed to be a hard way out.

[kehello]

Gastroenterologist said one drink a month (said this in 2001); I completely stopped everything except a couple years at Christmas only way back had one drink - been 17 years - don't miss it a bit; never drank that much anyway. New member of this group Oct. 2017; also am a PBCer.org member. Yes, I agree, have always been told and have read that alcohol is toxic to the liver. Believe it or not, just learned from other group that sugar is as toxic as alcohol to our livers! Surprising, huh? Kathleen in Ohio

[Sachin1234]

I drink 3 glasses of beer per week in average or less.. last December, I went to my birth place and I was so excited to meet my old friends and families that I could not control drinking alcohol😝.. after rerun to states I did a liver panel test and all came normal but higher than previous..I’m going to stop drinking I’m in the process..

alcohol is not good for the health anyway so if you can just avoid it otherwise it won’t hurt to have one or 2..drink per your body mass that way you know u are not putting too much stress to the liver...

[Grace8888]

I was never a heavy drinker but have always enjoyed a few glasses of wine a week. I was diagnosed stage 2 about 5 years ago......just two years after I started my winery. I drink a glass on special occasions (maybe 5-6 a year) Other than a little bitter, it works for me. My doc says one or two a week is fine. I only miss it once in a while. Damn luck.

[Stephanellie in reply to Grace8888]

I leave for Hawaii on Saturday. I plan to have a couple cocktails while I’m there, but will mostly drink the cocktails without alcohol!

[Hidden in reply to Stephanellie]

Have a wonderful time in Hawaii. I had a "blue Hawaiian" while I was there. Enjoy!!!

[Stephanellie in reply to Hidden]

Thank you!