Good morning all coffee drinkers! I think i will be going out and buying myself a nice coffee machine as well. I have just come back from seeing my specialist. I asked about drinking coffee and if it has any benefit on the liver. In sort their answer was yes. My specialist said this with a massive smile on her face which for me is very reasuring. The coffee has to be propper Italian coffee and not milky frothy lattes. Strong black coffees all round then 
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There are some new research results:
āDrinking at least 200 mL coffee a day may stave off the advancement of alcoholic liver disease and some cases of primary sclerosing cholangitis in patients with end-stage liver disease awaiting liver transplant, according to recent published findings. In addition, coffee consumption may increase survival post-transplant.ā
Iām writing this while drinking my 4th cup of coffee todayā¦I started coffee drinking after diagnosedā¦
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Ted, thank you so much for the information. I became a coffee drinker two years ago, which was four years after my PSC diagnosis. I have firmly believed that it has definitely helped meā¦Very nice to receive this verificationā¦good luck to all as we continue to fight this horrendous diseaseā¦Dave Szugaj
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As an avid coffee drinker and newly diagnosed with psc. This is the best news I have gotten in a long time. .Thanks!
I actually did some research work with coffee, sort of - adenosine receptors. Coffee has been demonstrated to be beneficial in preventing liver and colon cancer, Parkinsonās disease, etc. Unfortunately, Iām a super-heavy daily coffee drinker (I used to drink a cup of coffee before I go to bed), but I have PSC. I do have some theories about that discrepancy, but have no resource to test them.
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Been drinking for coffee for years too! Maybe it will slow progression. Got to enjoy that coffee!!
Hello to all coffee drinkers and soon to be coffee drinkers. I was diagnosed with PSC in 2010. I was not a coffee drinker but started after reading information about coffee and liver healthā¦With fingers crossed, i have been doing very well for the last 3 years drinking my 3 cups of coffee a day along with 300 mg of Ursodiol twice a dayā¦I have had a few minor flareups which were taken care of with 500mg of Cipro twice a day for 5 daysā¦I feel that exercise, taking your medication, eating healthy and plenty of rest is very important in fighting this disease. You must keep in mind that it progresses very differently in each person, so weāre not all going to need a liver transplantā¦Try to keep yourself as healthy as possible to enable you to live a normal happy life as much as you possibly canā¦Always have positive thoughts that weāre going to beat this diseaseā¦good luck to everyoneā¦Dave CJ
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Link?
Dr. Isaacs (former partner of Dr. Gonzalez & follower of Dr. Kelleyās - early success of nutrition based practice to extend life/health with case study support available online for a variety of conditions) in some cases prescribes coffee enemas for patients with liver complications, itās noted in a journal article that in a healthy person it can release bile & dialate the bile ducts. Iāll be researching/reaching out to her to learn if sheās treated patients with PSC. Iāll be happy to share our appointment results if itās of any interest.
Perhaps coffee might be beneficial from the other end!
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Hi,
Coffee inhibits Vap-1 apparently see the first link on liver disease and VAP-1 and thereās currently a study on-going at Birmingham University into Coffee and the impact on Vap-1 in healthy people! Second link
Interestingly Vap-1 is also targeted by Vedolizumab which is currently in trials for PSC.
Iām not not medical but I do enjoying researching albeit I research so much I scare myself!!!
Drinking coffee is supposedly more effective than taking it any other way!
P.S. De-cafe doesnāt work
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Hi Julian, thanks for the coffee information. I have been drinking 3 cups of coffee a day for 3 years. I do feel that it helps my PSCā¦even though my endo and liver specialist frown on thisā¦ Along with urso, I will continue to drink coffee until something better is approvedā¦
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I love turmeric and itās benefits, but be aware that it can make liver conditions worse, especially related to the bile ducts
I assume we wonāt get a clear āyesā as long as itās not 100% proven to help. Thatās just how health professionals are. Liability and all. So this answer is about as reassuring as it gets! Thanks for contributing this information!!!
From what I read, it also isnāt guaranteed to help. It just might. So yet another reason that many doctors may disagree and / or are wary of giving out clear recommendations.
And also yet another reason to continue doing research on your own!!!
I appreciate your research into this. Any update?
Hello everyone. My name is Andres. A good friend of mine was diagnosed with Primary Sclerosing Cholangitis (PSC) a few months back. Since his diagnosis, heās been trying various treatments to manage his condition, including Ursodeoxycholic Acid, which I understand is one of the more common approaches for PSC. Sadly, it doesnāt seem to be working well for him.
Weāve started looking into alternative options and came across information on clinical trials. There are quite a few ads out there, some even offering compensation over $1000 for participation. I want to make it clear that our interest isnāt in the money. Weāre in search of an effective treatment, hoping to find something that could offer my friend relief or better management of his symptoms.
This leads me to my question for this community: Has anyone here participated in clinical trials for PSC? If so, could you share your experience? Iām eager to learn how these trials work, what they involve, and most importantly, if they provide access to treatments or insights that arenāt typically available through regular medical channels.
Any information, experiences, or advice you could share would be immensely appreciated. Itās been a tough road, and hearing from others who understand this journey could be incredibly helpful. Weāre in NJ, btw, so if someone could recommend something around here in the Garden State, I would really appreciate that!
Thanks so much for reading, and I look forward to any insights you can provide.
Andres, thank you for your recent post and your concern for your friend. PSC itās a very complex rare disease. Each patient responds and progresses in
different ways. To start with the use of Urso is a medication that thins the bile. Although it doesnāt seem to be helping in his view of it I would encourage him to continue to take the medication. He doesnāt need to stop using it as it is helpful. As the disease progresses it makes it more and more difficult for bile to flow through the ducts and they become obstructed. If you were looking down on it it looks like a bead in the bile ducts and that bile is trying to go around those obstructions. This in turn can lead to infections that would require ER intervention. If he is not already set up with a transplant hepatologist I would encourage you to have him find one and get started. They will want to do imaging and possibly interventional treatments depending on his bilirubin levels and other factors. One medication that has proven to be very helpful for PSC patients is the use of Vancomycin. It is viewed by many in the medical field as controversial but many of us here on this forum can attest that it is helpful. It works to reduce the inflammation in the bile ducts. I am 8 years post-transplant and I have been taking it for the last few years. It will be very important for him to get regular laboratory tests to see the progression in the disease. There is no cure for PSC other than a liver transplant but often we see people live for years and years before that is needed if at all. Your friend must have people around him that he trusts and that he feels he can share what heās going through with. It is not helpful to keep all this bottled up inside of you, the key is to just live life every day to its fullest, and when PSC gives you problems you deal with it. You donāt lose hope, you donāt quit living life, you continue with your education and the hopes of starting a family. All those things that we do in normal life we just continue right on. Yes there will be difficult days, there will be challenges, but there is hope and I can attest to that personally.
Feel free to reach back out and invite your friend to join our forum as well. Itās an invaluable resource for patients with PSC.
Mark
PSC 2011 / Transplant 2015
Mark,
Thank you so much for your thoughtful and informative response. Itās incredibly heartwarming to receive such supportive feedback, and your detailed insights are truly appreciated. Hearing about your personal journey and the practical advice youāve shared gives us both a lot of hope and direction.
Iāll definitely encourage my friend to continue with Ursodeoxycholic Acid as per your suggestion, understanding now how it aids despite the lack of visible improvement. The information about Vancomycin and its role in managing PSC was particularly enlightening. Itās these kinds of firsthand experiences and knowledge from those whoāve lived through similar challenges that we find invaluable. Iāll also urge my friend to consult with a transplant hepatologist to explore further interventions and management strategies, as you recommended.
Your advice on maintaining a positive outlook and living life to the fullest, despite PSC, resonates deeply with us. Itās a powerful reminder of the strength and hope that can be found in community and shared experiences.
Regarding clinical trials, weāve been doing some research on our own, given the number of posts and advertisements weāve seen on social media. Weāre considering participating in this one, that seems promising and offers compensation, but as I mentioned earlier, our main focus is finding effective treatment rather than the financial incentive. Could anyone here share their experiences with clinical trials, specifically with this company or in general? How do they work, and are they worth trying in your opinion?
Mark, your encouragement for my friend to join the forum is a wonderful idea. Iāll definitely suggest that he either join himself or participate in discussions under this account. This communityās support and advice could be a great comfort and help to him as he navigates his journey with PSC.
Thanks again for taking the time to respond with such care and detail. Your advice and encouragement mean a lot to us.
Best regards,
Andres
Andres,
I was offered the opportunity by my liver doc to participate in a clinical trial and chose not to.
In reading the 10+ pages describing the plan, the caveats, the waiver and side effects, my wife was much more against it than I was for it. Any decision like this is very individual and personal.
So tell your friend to do his research, study the treatment plan and decide for himself.
I do not doubt for a second that these participants in clinical trials are providing a much needed service.
Jeff