I do.  I have been diagnosed since 2017, when they also found displeasia in my colon, which was then removed, then pouch in 2018.  I am not on the liver transplant list as it is staying mild.  But I do very regular blood tests and MRIs so that the doctors keep a close eye on it.  So far ot has not advanced too much.  What about you?

Thanks for responding. We hit the wrong lottery. I do exactly the same thing. Blood tests and MRI and ultrasound every 3-6 months. Lately feel so fatigued and my urine so dark I find it hard to function but my hepatologist doesnt seem too concerned but its so frustrating. Do you take ursodiol for the bile flow?

No, I don't take anything.  My urine is still fairly normal almost all of the time, and besides the fatigue and some intermittent itching, I'm in pretty good shape, so far.  Diagnosed in 2017. 

@Downtownfan posted:

I do.  I have been diagnosed since 2017, when they also found displeasia in my colon, which was then removed, then pouch in 2018.  I am not on the liver transplant list as it is staying mild.  But I do very regular blood tests and MRIs so that the doctors keep a close eye on it.  So far ot has not advanced too much.  What about you?

MRI or MRCP ? I keep being told MRI is not diagnostic or confirmation scan for PSC?

MRCP. Last checkup everything looked good for someone with liver disease but between the two conditions I feel like garbage. Im used to it so I just deal. No fevers or blood or anything so I guess thats a bonus.

I have PSC. I get regular blood tests every three months. I’ve had a couple biopsies done, MRI’s, and ultrasounds to routinely check it.  So far my enzyme levels have remained normal. I was diagnosed right after my j pouch surgeries almost 15 years ago.

This is near and dear to my heart, since my brother died of PSC almost 20 years ago at the age of 34. He didn’t have crohns or uc.

I've had PSC for at least 30 yrs. My liver enzymes are all within the normal range. Two years ago I had an MRCP (similar to an MRI). The entire biliary tree was open and my liver had zero scarring. Have been taking Ultra Thistle, 2 morning and 2 evening (but sometimes I just take two daily.) It's sold on Amazon but a better deal is offered through the Natural Wellness website. Have read that it's good for fatty liver and other liver issues as well. Do a search for "milk thistle for liver diseases" on the NIH website. It could be that my liver would be okay without taking it, but I'm no gambler.  ---  Rose

Wow! Thats fantastic. Im going to look it up and give it a try. Thanks

I take Nature’s Bounty milk thistle 250 mg three  times a day. Like Roseviolet, I believe it is an important part of why my liver is still doing well. I usually order it from Amazon.

What is that exactly???

Are you asking about PSC or milk thistle? Milk thistle is a supplement to support the liver. It had helped get my enzyme levels back to normal.

PSC is a narrowing of the bile ducts of the liver. It will increase liver enzymes. It can lead to jaundice, excessive fatigue, and possibly liver failure. The later is a worse case scenario. My brother had a severe case of PSC that caused him to die of an infection because his liver was so weak. I have PSC and have not progressed any where  near the point he did. Probably because I use milk thistle and my GI monitors it so well. It’s not uncommon for people who have UC or crohns to also have PSC, but my brother did not.

Hope this sheds light on your question 😊

A few more details about milk thistle. If you go to the NIH (National Institutes of Health) website and do a search for "silymarin/silybin & liver disease" many articles appear. One such abstract (which I couldn't cut & paste for some reason) is "Silymarin/Silybin and Chronic Liver Disease: A Marriage of Many Years." By Federico, Dallio, Loguero; Jan. 24, 2017.

From my reading, it seems that it's milk thistle seed (not the leaf) that contains the portent ingredients. Silymarin is a component within the seed and Silybin is thought to be the active component that is so potent within Silymarin. Silymarin and Silybin are easily & quickly absorbed by the liver. Here is an article explaining what I've just summarized: Google "Difference Between Milk Thistle, Slymarin & Silybin." Click on the Mega BIO-LIFE entry (7/2019).

Long ago I used Nature's Bounty but then discovered Ultra Thistle which is pure silybin at high amounts. It's more expensive that Nature's Bounty, which often goes on sale at 2-for 1. -- Rose

@Still Standing posted:

Are you asking about PSC or milk thistle? Milk thistle is a supplement to support the liver. It had helped get my enzyme levels back to normal.

PSC is a narrowing of the bile ducts of the liver. It will increase liver enzymes. It can lead to jaundice, excessive fatigue, and possibly liver failure. The later is a worse case scenario. My brother had a severe case of PSC that caused him to die of an infection because his liver was so weak. I have PSC and have not progressed any where  near the point he did. Probably because I use milk thistle and my GI monitors it so well. It’s not uncommon for people who have UC or crohns to also have PSC, but my brother did not.

Hope this sheds light on your question 😊

Thank-you for explaining! And sorry to hear about your bother He is in a better place.

Previous laboratory studies suggested that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. However, results from small clinical trials of milk thistle for liver diseases have been mixed, and two rigorously designed studies found no benefit

from www.pscpartners.org   fyi