I was diagnosed with primary sclerosing cholangitis (psc) about a year ago. I am currently going through testing, blood tests to an MRI. I am supposed to go have a cholangiogram but have not yet been scheduled (a liver biopsy is the last resort). My question is, has anyone else been diagnosed with psc, and if so, what are you doing about it and what are your doctors doing about it? And should I be concerned for the future?
From what I know, psc affects more men then women, and that it is rare, and what causes it is unkonwn, although there is a connection with psc and some form of inflammatory bowel disease such as UC which, lucky me, I have/had. but even better news, only about four percent of all patients with IBD have PSC.
So is there any more four percent-ers out there?

Hi,

I also have PSC. I was diagnosed during my last UC flare before having my colon removed. That was in March 2003. They did a liver biopsy while I was having my j-pouch made in Dec. 2003. Right now, I am not on any special meds. They had me on one--I can't recall the name of it at the moment, but it made my hair fall out and I felt yucky on it and with no guarantee it was really going to help me, my GI decided to take me off of it. One member here, Kaboom, is on the same drug and is not having the side effects I experienced, hopefully he will come along and add his input. I think he is doing well on the drug.

I just try to live my life and not worry about the PSC. I stay away from alcohol except for a glass of wine if I go to a party, and I do not take any medication unless it is absolutely necessary. I get a blood test every 3 months to keep an eye on my liver enzymes. I don't get the results after every test. My GI only calls me with the results if something is really elevated. I see my GI about once a year if I don't have any problems.

I say educate yourself about the disease, but don't scare yourself silly about the info that you do find. Just keep a positive attitude and follow your GI's advice.

Becky

Hi Becky

Thanks for the response. I was suprised to see that you have psc because it is rare for a woman to have it. I havent been placed on any meds right now because my doctor doesn't feel that they really do much, or very little. However, my belief has been, a little is always more than nothing. But I am not sure I would care for the side effects that you experienced.
Also, I have never considered my self a drinker, but after being dx with psc I dont drink at all. However, I saw that you have a glass of wine now and then, has your doctor said to avoid all alcohol or just drink in moderation? Because there are times I wouldnt mind raising the glass in a toast once in a while, albeit a rare once in a while.

Derek

Hi Derek,
I was diagnosed with PSC about 5 years ago. I am on Ursodiol, suggested by my GI. I guess they still are not sure if it helps, but like you said, even a little bit of help can't hurt. I have not had one side effect and take 3 a day. At the diagnosis I was devastated but after awhile one just accepts what you were handed out in life. I do not think about it a whole lot, do not have any symptoms at all and hope and pray that it does not rear its ugly head. I have enough to deal with my pouch which does not behave well. I have blood work done every 6 months and have not had an elevation in enzymes in four years. My dr said this does not mean the disease is not advancing but I still give myself a high five when I get the results.
As the saying goes, Ulcerative Colitis is the disease that keeps giving." Grrrrrrrrr

Hi Everyone. I don't post often, but this caught my eye. When I had my TD in March 2007, I had a severe liver problem. I have Gilbert's syndrome/disease. Some call it hyperbilirubinemia. Anyway, my bilirubin shoots up sometimes and I feel very sick. Normal is like 1.5 I think. I get sick at about 5.0. In March it was 11.0. The doc said he never saw anything like it. Of course they tested me for all the hepatitis stuff and all was fine. So they put me on Urso Forte. They haven't formally diagnosed me, but I haven't had a clean check up yet. My bilirubin is always about 2.0-3.0 and usually another enzyme is slightly elevated. So I don't know if the Urso does anything. So I just don't think about it much, unless I turn yellow, and when that bilirubin shoots up, I turn yellow. I hate it.

Well, I hope you all do well and I pray for all of us on this board often.

David

Add me to the PSC list. They only found mine by blood tests. I am on Urso, and it normalized my ennzyme levels. I have not had a blood test in a while with all the surgeries I had last year, I am waiting for the paper work for another round just to see how I am doing.

Hi Derek,
I was dx with UC back in 1974 and then PSC in 1977. No one knew much about PSC then (except that it was rare!) and there were no options. Fortunately, it is a very slow disease process; a person may go 16 to 20 years without problems.
(or longer, as one of my friends has)

By the time I was critically ill, liver transplants had been developed along with better meds. I had my transplant in 1989 and have done wonderfully since. So before your PSC goes too far, who knows what great solution researchers may come up with?! If you would eventually need a transplant, the procedure is much simpler now and the meds are have fewer side effects.

I did have to take a cortisteroid the last few years I had PSC to deal with inflammation and the urdosiol supposedly helps keep "sludge" moving through the narrowed bile ducts, thus reducing possible inflammation/infection. However, if you are in early stage, it is too soon for these things probably.

FYI, liver biopsies aren't a big deal - just a big poke with a long needle and then you have to lie still for a long time. It's truly the best way to see exactly what is going on with the liver.

Nevertheless, it is always scary to get this dx, but, despite the "rarity", there actually are quite a few of us 4 %ers out here!

Peace

Hi Derek,
I'm writing on behalf of my boyfriend/partner who also was diagnosed with PSC. He also has a J pouch and was recently diagnosed with Crohn's in the last 10 inches of his small intestine. Yes, dealing with one more thing on top of UC can feel overwhelming. He isn't currently taking any medication for PSC, but does get his blood drawn every couple months and enzyme levels checked. So far his attitude has been that since PSC doesn't require immediate attention and seems to be silent, so for now he can focus his energy on other things. I'm not sure if that is a good attitude, or just avoidance, but it seems to be working. As other have commented, I've read a lot of information that says you can live a long time with PSC with very few problems. Good luck!

Hi,

I was diagnosed with PSC probably 2 years before my three surgeries to remove the UC. I think it's either an autoimmune disease or related to UC, or a combo of UC, AD and prednisone, which was the main drug of choice pre 1988 when I had surgery. After my takedown, my gastro guy stopped by and said, next we need to discuss your liver. I laughed and ignored the problem until I started turning green. I saw my doctors, sure, but there's not much you can do about it. Even moderate drinking will not make a difference either way, I was told. In 1997 I had a liver transplant at the ate of 37. Yes, I've been through the mill. It was tough and I still take some expensive meds daily and probably always will, but my digestion has improved immensely. I have less leakage, less butt burn, less gas noise...it's just so much better. I also had a horrible leg infection in high school that took a year to heal...UC related. Anyone else have that?

So, bottom line...I'm sorry you have PSC. Get on a list ASAP because eventually it's going to start causing problems. They called me one night when I still wasn't too sick, I was working hard up until and then three months after the transplant. I had to say yes, what else can you do?

Me again. My doctors said alcohol didn't make a difference at all, so not to bother abstaining. I also just remembered (in my haze of so many drugs over all of these years since age 14), that I took Ursodiol to help process bile, I believe. And I think this is when the bad leg cramps began, so I may have had quinine pills at one point, though B12 has been my lifesaver on that front and still it.

One more time...I've been doing fine since the transplant, but still take 5mg of prednisone to ward off any recurrence of PSC if in fact it is an autoimmune disease.

Hi Derek,
My husband also has PSC - diagnosed in 2000 but looking back has had it since the 1970's. He is on the liver transplant list. He just had his colon removed in Dec. and is recovering. He is taking Ursodiol for the PSC.

TJD

I must have missed this post. I also have PSC and a J pouch. So far, no symptoms and by a liver biopsy it is staged at 1.

I am actually not certain that I am taking high dose urso or if I am taking a placebo. I'm in a double blind clinical trial through Mayo Clinic. My insticts tell me that I am on the placebo as my enzyme levels are not reducing and I am not experiencing any of the possible side effects. But - there is no way to tell. I'll give you the answer after the study is published in 6 years!!!!!

As a part of the trial, I am going to have an EGD done on Monday to check the veins in the esphogus (done at same appt as my pouch scope) and I also have a liver biopsy and ERCP done every 2 years. This will give them info about disease progession as well as how effective high dose urso is in delaying or stabilizing the disease. It is exciting for me to participate in this because hopefully I can be a part of the solution. And, i would encourage you all to try to get involved in a study if you qualify. There are at least 3 major studies going on right now through Mayo Clinic and they can be done no matter where you are geographically.

Another note about PSC - I have seen some discussion of alcohol. Yes, it is true that a little alcohol consumption will probably not hurt your disease progression. However, in end stages and near liver failure it is not recommended. The other risk factor that is linked to alcohol consumption is an increase in the possiblity for cholangiocarcinoma.

Speaking of CC - and this is something you all might want to consider asking your caring physican about - there is a marker that can be tested in bloodwork that can help to identify CC at an early stage. Since it is often difficult to find until it is advanced, this can be a good tool to give you a better chance for beating it. The downside of it is that it not as reliable as I would hope. Last year, the marker came back positive for me and turned out that it was probably a false positive after much additional testing.

Let's all keep our hopes up and not let this disease get us down too much. The future treatments will be better than treatment that is available right now!!!!!!!!!!!!

Rick

Derek,

I was diagnosed in 1998 and am currently on the transplant list. I take Urso. I was told that Urso is a safe drug but, they don't have enough research to say it helps for sure but, they think it does. I have had ocassional bile duct infections where I run high fever and have to get it treated with antibiotics. Most of the time I don't get jaundiced so it can be hard to tell what is causing the fever. I don't know if you have experienced this. My understanding is this can be dangerous so don't hesitate to call you doctor. They would probably do a blood test to check your liver and give antibiotics. That is the case for me most of the time but I have had to be admitted to the hospital to treat dehydration and to get the fever under control.

TonyB

Derek,
I too, have been diagnosed wiyh PSC. My GI is at Mayo and short of watching liver enzymes, says there is no treatment. I am not a candidate for transplant, severe adverse reaction to steroids. I was diagnosed by liver enzymes , MRCP, ERCP. Now, as my doctor looks at the results they say, well it could be a little iffy....maybe you do, maybe you don't. But at present are refusing to do the tests to rule it out one way or the other. There are some risks with both ERCP and liver bx. Leaves me a lot frustrated , what am I supposed to do? Wait til I turn yellow? As said above its rare and not usually women.....I'm going to keep pushing for further testing. I'm sure you've read up on this disease, and its unpredictability.
LoriP