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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Diet Changes or Tips?

Hello there,
I am a 24 year old single mom recently diagnosed with PSC about 3 months ago. I was wondering if anyone has tried any diet changes that have improved their overall quality of life? Any tips to managing the exhaustion ? the itchiness ? I dont know, anything ?

My doctor told me to take multivitamins and vitamin D, anything else I should be adding to that? and how do i know which ones are the good brands?

Thanks in advance for your responses.

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Hi Vasni,
Thank you for reaching out to this forum. We are here to help you along your journey with PSC. Education is the key at this time so I encourage you to learn all you can about PSC and how to manage the symptoms. There is no known cure other than transplantation, but hopefully you are a long ways from that. There are a number of things you can do to help your quality of life.
The very first piece of advice I offer to you is to make sure you are seeing a Hepatologist for your care. Not just a GI but a hepatologist. This is a doctor that specializes in the diagnosis and treatment of a liver disease. He/she needs to be associated directly with a major hospital that does liver transplants. You need to have a doctor that has the connections, so when the time comes and you need to be listed for transplant they will be in a position to make that happen fairly quickly.
I encourage you to start a daily exercise regimen. Something as simple as walking 30 minutes a day or any other core strengthening exercise will be good. You have to keep your body in the best shape possible through these years so when the need for a transplant comes you will be strong enough to handle the surgery well. For the itch, there are various methods we have all tried. Some work better than others for each of us. For me, the only thing that would bring relief up to 98% was a drug called Rifampin. I was on 300 mg twice a day. You might ask your Hepatologist about that. Exhaustion is just a part of the disease. You will have to find a good balance of rest and activity with PSC. You really need a good support system. I hope will involve your family or close friends with this news. You need to take someone with you to each appointment that can take notes and help you remember to ask the questions of the hepatologist at each appointment. They will want you to get labs in the beginning probably twice a year with an annual MRCP and possibly other tests.
Multivitamins and D are certainly helpful. When you start waking up with terrible leg cramps add magnesium to the mix. I took and still take magnesium citrate 800 mg twice a day. You might be fine pre-transplant with just taking it at night before bed, so that would be just 800 once a day. Another thing that helps with leg cramps is to keep some tonic water with Quinine in it (wal-mart sells a store brand in little bottles). Take several swallows of this when they are really bad and it does help settle things down. The stuff tastes nasty but you get used to it over time.
Stay away from anything like a “liver cleansing diet”. These are all snake-oil remedies that will only cause further damage to your system. I hope these initial thoughts will be of help. Feel free to reach out with any questions that come to mind. You are going to make it through this process, you will just have to take one day at a time, plan for your future and live life to it’s fullest as you deal with this rare disease called PSC.

Mark
Diagnosed 2011 / Liver Transplant 2015

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Vasni,
Diet is very individualistic. The trick is to eat a healthy diet, which is often easier said than done. As my psc progressed, I started having multiple snacks throughout the day instead of breakfast, lunch and dinner.

As psc progresses, we do not absorb fat-soluble vitamins well. These are vitamins A, D, E and K. So as Mark mentioned, supplements will help.

Fatigue? I usually had naps on the weekend, at least one per day, sometimes, three a day. There were many times I came home and slept for an hour to an hour and a half.

Throughout the day, it was crucial to pace myself, to spread out what energy I had.

Your being a single mom would seem to make it difficult to take the multiple naps. I hope you have some support/family who can take your kid(s) for a few hours.

Speaking of support, it would be of immense help to develop a large support group.

One of the things that helped me the most was the mental aspect of dealing wth psc.
I learned a long time ago in dealing with UC to keep focused on the long term, while dealing with the short term “stuff”. And knowing that psc symptoms can appear at any time.

The best thing about psc is that for most, psc usually develops pretty slowly. But at some point, know that it will become a roller coaster ride.

Jeff

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My Hepatologist didnt seem to know much about PSC and he said he would order a fibroscan about a month a half ago, I have called him back but have not heard from him. Do you know of any website where I can find a good hepatologist, preferably one that has dealt with PSC before?

He also recommended taking calcium with magnesium? Any idea why that might be?

Thank you so much for your response

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Hi Mark,
Why is that any liver cleanse is bad for the liver? First I hear this.
Thanks!

Vasni,
What state are you in? I’ll be glad to help you find a hepatologist. I can’t speak for why he would want you to take calcium now, I’ll leave that for you to discuss with the hepatologist. Magnesium does help with the leg cramps that come with PSC. I’d suggest Magnesium Citrate. If you are having cramps, taking around 800 mg each night before bed will help a lot. I look forward to hearing back from you.
Be sure and give me your city when you send the state information.

Mark

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MzzP,
With PSC, your liver is already compromised and is struggling to process all the blood going through it, making bile, etc. It is working in overtime as it struggles with increased portal pressure/hypertension, etc. These liver cleansing diets have some pretty harmful side effects. There’s nothing you can drink or eat that will cure you of liver disease. Yes, we want to eat healthy, but some of these diets almost are treating your liver like it’s getting a colonoscopy and you are prepping your colon for an exam. This is hard on your liver and you don’t need anything more damaging it, your strictured bile ducts are causing enough damage in and of itself.

I want to share with you what a PSC liver looks like at MELD 36 when I had my transplant. I was barely alive when I got my transplant. Just think what might have happened if I decided to cleanse my liver about this time. It would have just taken me on to Glory I’m afraid. Do run any medications or treatments past your hepatologist always before trying anything. Thanks for your inquiry though. It’s always good to ask.

–Hope this image isn’t too graphic for you, but it’s a reality with us PSC patients at some point.

Mark

Hi Mark,

I live in Dallas and I went to see a Hepatologist in Ft. Worth TX that is part of the Presbyterian Hospitals family.