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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Coffee and PSC

In reference to the Mayo clinic report that was published a couple months ago stating that coffee drinkers were less likely to have PSC. I was never a coffee drinker and was diagnosed with PSC in 2010. Well, after reading the report I started drinking about three cups of coffee a day and I have been feeling great. No discomfort in the upper right stomach area at all. I know how unpredictable PSC can be and I could have a flare up today, but since I have been drinking the coffee I have been symptom free. I wanted to share this with everyone and wanted to know if anyone has had the same experience. Wish everyone good health and happiness....Dave

I agree, I'm always trying new things or trying to obtain new information. It can be very frustrating at times because so little is really known about the disease and because of that, very limited treatment. We have to stay positive, it can only help.

Dear DaveCJ,

I read that report too and did toy with giving coffee to my daughter, but as she is only 7, I decided against it. I thought I would see what the outcome is and then maybe when she is older introduce her to it. On the other hand, if the results are brilliant, I may reconsider.

Thank you for sharing.

PrincessD's Mum

Thanks PrincessD's Mum, lets keep our fingers crossed...Wish all the best for you and your daughter...DaveCJ

Dear DaveCJ,

Yes and hope that they keep finding things that can assist or even possibly cure these illnesses.

Take care,

PrincessD's Mum

Hey Big Steel, you might need a little sugar in that cup...lol...I'm always trying to find new study results. Sometimes I think there might be some very simple supplement or herb that might be found to end the flare ups or stop any more damage. How about turmeric, or fish oil ???

Big Steel, thanks for the insight. I try to keep a healthy diet too, but my doctor tells me that it doesn't matter as far as the PSC goes.I try to keep my diet very lean, staying away from real greasy fatty foods and exercise is very important too...Stay healthy...DaveCJ

Big Steel, I guess I didn't explain that too well. What my doctor told me was to eat healthy of course. I was looking for some kind of miracle food and my doctor couldn't provide it.He said get your rest, exercise and just keep doing what you're doing, which was living a very healthy lifestyle.I totally agree with you...anything to slow this terrible disease down...stay positive, and hope for a breakthrough sooon !!!...DaveCJ

Dear DaveCJ and Big Steel,

PrincessD's doctors are of the same opinion of your doctors i.e. her diet wouldn't affect any of her illnesses. I have spoken to many people, who disagree. I therefore am very careful what I feed her. I too have tried turmeric. I spoke to one gentleman who told me that he had positive results from using turmeric capsules. I haven't gone that far, but I add it to food. There was a time everything I cooked would have at least a teaspoon of turmeric. I keep hoping that they will come up with a cure for PSC. In the meantime I will try anything. I am only hesitant about the coffee because some people's opinion is coffee is not good for children for a number of reasons. What is your opinion?

Kind regards,

PrincessD's Mum

PrincessD, Let me begin by saying that you seem like a fantastic mother for your daughter. I totally understand the way you feel about trying anything that might help cure or slow down this terrible disease. My doctor said that I had to be careful with certain herbs or supplements because they could actually make things worse. So we do have to be cautious with what we try. I feel that a couple cups of coffee a day certainly wouldn't hurt your daughter and could possibly help. A small dose of turmeric could also be helpful, but could cause stomach upset especially with a child...DaveCJ

PrincessD, Are you familiar with Vancomycin? It's an antibiotic that seems to be showing great promise in fighting PSC in children. If you haven't yet, I would definitely talk to my doctor about it. I'm praying for your daughter...Dave

Dear DaveCJ,

Thank you for your kind words. They really do mean a lot because I know people may beg to differ. Which herbs or supplements have you been warned against? I read some where that coffee and tea put pressure on the liver and kidney. Yet other opinions are that it does no harm. Sometimes I don't know which road to take because I do not want to do more harm than good.

Take care for now.

Mel x

Dear DaveCJ,

I read about Vancomycin on here and another member was kind enough suggest it. PrincessD's doctors have not mentioned it as yet. She was on Urso,Cevalaxin, Sulfasalazine, Imuran and Enalapril. They took her off the Cevalaxin (Thank God). She was actually on that for the kidney.

Take care for now.

Mel x

Dear Stephen,

Thank you for responding. Maybe for now I will hold off from giving her coffee. I will try and see what the feedback is over time.

Take care,

Mel x

Dear Stephen,

Thank you. I appreciate at. Two heads are better than one, right?? LOL

Take care and enjoy your weekend.

Mel x

I was told to continue drinking coffee because it is beneficial to the liver and has also been linked to a decrease likelihood of liver cancer.

This report addresses coffee and supplements: http://pscpartners.org/PSCConf13/PDFs/Chopra_Myths_Reality.pdf

Kapil Chopra is Director of Hematology at the Unviversity of Pittsburgh.

Thanks dancermom, lots of information there...DaveCJ

This is a paragraph from an article in this year's Nature:

"Coffee consumption has been consistently associated with a reduced risk of hepatocellular carcinoma (HCC) in both case–control and cohort studies. The effect of coffee is dose-dependent regardless of the aetiology of underlying chronic liver disease. In a meta-analysis of 14 studies (eight cohort studies and six case–control studies; 2,733 cases of HCC), Bravi and colleagues observed a 43% decline in the risk of HCC in individuals who consumed coffee. For each cup of coffee consumed per day, the risk of HCC decreased by 23%. Coffee might exert its antineoplastic effects through compounds such as diterpenes, cafestol and kahweol, which modulate enzymes involved in carcinogen detoxification; caffeine also has antioxidant properties. In addition, coffee has been shown to reduce the risk of advanced fibrosis and cirrhosis, and hence, might indirectly modify the risk of HCC"

Pretty clear evidence that coffee is good for us! I think I'll stick to 1 or 2 cups a day though...

Miker123, Thanks for the information. I definitely will continue drinking my 3 cups a day, wish I would have done it sooner though...DaveCJ