Coffee drinkers before PSC?

Hello fellow PSC’ers. So my Liver Specialist mentioned drinking coffee as it may have benefits to people with PSC.
That got me thinking…I was not…and still not a coffee drinker. I am afraid that caffeine could have other detrimental affects for me, such as insomnia.
Lots of people drink coffee, so maybe it can’t be all bad?

I am curious, were you all regular or even heavy coffee drinkers prior to getting PSC symptoms?
If there is any correlation, perhaps coffee drinking helps to prevent PSC?

Would love to hear your thoughts!
Jason

Hi Jason,

I drink about 5 cups of coffee per day. Coffee wont make your PSC worse, but it might make your IBD worse (if you have it). When you drink coffee, your gallbladder empties all it’s bile acid. There’s a theory and some studies that suggest that this might reduce liver damage caused by PSC, but this isn’t proven. :slight_smile:

Kind regards,
Andreas

Hello Jason,
I have never been a coffee drinker. 60 years old, PSC diagnosed 2014. Never drank coffee.

Hope this helps,
Russ

There are few earlier threads on this topic.
Many studies confirming that drinking coffee seems correlated to not getting Psc (as well as being helpful for some other liver related conditions and cancers).

Some studies:

Coffee consumption protects against progression in liver cirrhosis and increases long-term survival after liver transplantation.

https://www.cghjournal.org/#http://www.cghjournal.org/article/S1542-3565(14)00054-8/fulltext
Reduced Coffee Consumption Among Individuals With Primary Sclerosing Cholangitis but Not Primary Biliary Cirrhosis

As for myself, I didn’t drink coffee in my 30s, but nowadays I have 4-5 cups of coffee per day. I feel this is one of the pleasures in life and I like to take the break from work to go get coffee, and the potential health benefits are extra plus. I do believe that diet choices (such as coffee or blueberries) have a minor role in PSC and UC progress.

You can take my coffee mug away from me only from my cold dead hands…

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I drank coffee or caffeine. Quit, drank it. Quit. I don’t like the buzz but I do love the flavor and taste. So I also did a lot of quality decaf. too.
Since diagnosis, I am like, what’s one cup in the morning … if it possibly assists with PSC?

Well, now I’ve developed some form of OAB where coffee is one of the, if not the worst trigger to pee unexpectedly. No cause or reason - I just now have this overactive bladder at 54… so, coffee is only drunk when I just crave the ambiance of it… like early morning cooking or outdoor flower and gardening watering sessions. Peaceful, warm and yummy :slight_smile:

Recently, I attend the PSC conference and the experts discussed how people with PSC don’t drink coffee. They speculate that coffee may be a protective factor.

Hi, have a search on the forum as I posted a research paper on the effects of coffee on liver disease. From memory I believed it affects VAP-1 the adhesion protein which causes fibrosis.

I have seen that recommendation as well, but as I hate coffee, I am not a good judge of the results of that recommendation.

When I was pre-tx, I made the comment to my wife about the study. She hounded me frequently about drinking coffee. To placate her, I took two sips of coffee on two occasions and still hated it.

Thanks for starting this discussion! I’ve read lots about PSC and coffee and was an avid coffee drinker but I’ve experienced a pretty sharp decline in health with more triggers for a ‘flare-up’ and have found that caffeine in tea OR coffee is a trigger for me. The last two times I tried to drink it I ended up in emerg with extreme pain (but no cholangitis). Not trying to scare anyone away from drinking it but I’m definitely curious if anyone has had a similar experience. I would love to get back on the coffee if I could!

Hi Jason, I never drank coffee before PSC but I do now! I have a lot of fatigue and need a boost. I drink it any time of day and don’t have any stomach or sleeping problems. I don’t know of any benefits except the caffeine.

Danielle

Giraffe, welcome back.There is a lot to be said for caffeine. I get mine with tea. Glad you are ok with the coffee at any time, and that it helps you.
Jeff

I started drinking coffee maybe 2-3 years before I was diagnosed but I never drank it when I was younger, so I think it’s fair to say I didn’t drink much coffee before the onset of PSC

I hope that coffee actually helps because I love the stuff. One to three cups a day is normal for me. Like Giraffe I use it for a needed energy boost. My body seems to need a lot of water and when I drink more coffee I think it is important to further increase the water for the sake of the kidneys and other organs. Keep hydrated.

Cheers,
Chris

Hi, I really don’t think that coffeedrinking might prevent me from PSC. I’ve been drinking about 2-3 cups of coffee since I’ve been 18, now I’am 40. This year I received PsC diagnosis, 4 yrs ago - CU. As someone said coffee may worsen your intestine problems if you have ones.

I drank tonnes of coffee all my life! …still got PSC.
But I do extremely well for my conditions, no problems at all now and I live like a person who doesnt have PSC / Crohn’s. I wonder sometimes if my coffee habit did something to help.

If you want to add coffee, start with decaf, then slowly add caffinated coffee to your daily drink. You can order “half-caff” at most places which is half decaf and half caffine coffee, or make your own mix at home.

Have it in the morning, not before bed!

Like any disease, it’s all a mystery what causes it to occur?
Anyway, I have started to drink Swiss Water decaf daily. Can’t hurt I suppose.

I figure maybe it’s the coffee beans themselves that can help with PSC symptoms regardless of caffeine or not.

This is a really good comprehensive science backed article by Paleo Mom that talks about coffee and autoimmune things.

As with most things it’s complicated.

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Russ, welcome back! I hope you have been doing well.
Jeff