Primary Sclerosing Cholangitis

June 24, 2010 4:05 PM

What's been your experience with Primary Sclerosing Cholangitis?

BF just got diagnosed today - still reeling a bit and looking for resources, advice, personal stories...anything you got.

posted by stray to Health & Fitness (4 answers total)

It's not much to go on, but a reasonably close friend of mine was diagnosed with PSC ...oh, ten years ago. Maybe more. He was (as I remember) quite ill initially (leading to the diagnosis), but since that time (aside from taking a daily medication) he's seemed healthy, happy and well. I believe he no longer drinks alcohol. Unfortunately, I can't tell you too much about the specifics- he's a pretty private guy. But definitely active, happy and looking good. Wish I could tell you more-- but perhaps it's a good sign that I can't!
posted by BundleOfHers at 6:26 PM on June 24, 2010

Hey there,

I was diagnosed with PSC just before Christmas.

I have to say that, currently, it does not affect my day to day life very much.

I drink far less than I used to. When I am home with a movie and a take away I will have one, maybe two beers, no more. When I am out and about I will have nothing. I find it easier to have nothing when I am in a very alcohol-focussed setting than to have one or two and then stop.

Fatigue is the worst aspect that I have. I can get up in the morning, get to work and be there for an hour and then feel so tired I could sleep right then. By mid-afternoon my eyes are stinging because I am so tired. But this does tend to come and go depending on how well my liver is coping at that particular time.

I haven't really had a lot of upper-right quadrant pain or itching. Nor have I had a cholangitis attack so I can't really help there.

You should make sure that he is put on URSO, which is the standard med. It doesn't stop the progress or even make the symptoms go away but it does reduce the risk of colon cancer and make your blood test results look nicer (which seems to make me less tired). If you are in the US I am not sure how much this costs… Sorry.

There was a recent study in the US which showed that large quantities of URSO actually sped up the progression of the disease, which has scared off a few doctors prescribing it, but in mid to low doses it is still worth taking.

A great piece of advice is to not google this. I repeat, DO NOT google this. You will end up just scaring yourself and your BF. A lot of sites on the interwebs have very out of date information which paints a very bleak picture of the prognosis. Remember - most people die with PSC, not of it.

Does your BF have any form of IBD? The two are very strongly linked. If he does then he will need to have annual colonoscopies.

Good websites to look at are: http://www.pscpartners.org/ (US based) and http://www.psc-support.demon.co.uk/ (UK based)

Feel free to MiFi mail me if you want any further info. I also have a blog where I talk about my health which is linked in my profile.

I am sorry that your BF has been diagnosed with this, but with a good outlook on life, all will be fine.
posted by Nufkin at 4:29 AM on June 25, 2010

Hi. I'm sorry it's taken me so long to answer this question.

My only experience with PSC is that I had a good friend who had it. She lived with the disease for three decades without too many complications, but she died in her early forties of bile duct cancer, which people with PSC are at high risk for. She had MRI scans of her abdomen every three months to watch for just exactly this thing, but the cancer happened to develop at exactly the right time to be missed by one scan and be inoperable by the next.

I don't want to scare the hell out of you; this was a rare piece of bad luck on her part. The only reason I bring it up is to urge your BF to talk to his doctors about these kinds of associated conditions, and to take their monitoring schedules and requirements seriously. His hepatologist and whomever else he sees will have a good idea of what is right for him, and he should really follow their recommendations closely.

Best of luck, and good health to you and him!
posted by KathrynT at 10:37 AM on June 26, 2010

Phew.

Thanks guys.

This in particular: A great piece of advice is to not google this. I repeat, DO NOT google this. You will end up just scaring yourself and your BF. A lot of sites on the interwebs have very out of date information which paints a very bleak picture of the prognosis. Remember - most people die with PSC, not of it. While I totally didn't follow this advice ---it helps to remember to keep all the worst case scenarios in perspective.

KathrynT, I'm sorry for your loss.
posted by stray at 12:56 AM on June 27, 2010