Hi everyone, I am new here. My husband has UC and PSC diagnosed in 1995 when he was 20 ish. He is now 45. We have been together for 12 years and married for 9. We have one daughter who is 7. Over the years his UC has given him some issues he seems to have UC flares every few years. The last serious one was the year our daughter was born. He is now on remicade which seems to be helping. He has a great GI specialist who keeps tabs on both conditions. The last couple of weeks the PSC flared up with abdominal pain, jaundice , itching. He had an ERCP 2 weeks ago which they tried to stretch the duct that there was a stricture in. In the meantime of coarse he is getting blood work done to moniter progress. Hi specialist told us last Wed that his #'s did not come down enough and he was going to do another ERCP on THursday and put a stent in. Which he did. He told us that there is one small duct that has a stricture and they stented it. He said all in all things look pretty good. So I have a few questions, this is really the first time that we have had to deal with this disease, how long will it take for his symptoms to go away? He is still having dark urine but seems to be feeling better. Last time the DR did his blood work (before his last ERCP) his Bilrubin was down to 40 (which is still high as I understand it) Is it the Norm for this disease to be generally unproblematic for 18 years (His blood work has never showed any elevations - liver enzymes - Billirubin etc... . Now that we have had this issue can we expect that this is the beginning.
Hi MFlynn, I'm concerned no one has given you some feedback so I thought I'd write a quick note to you. Honestly, the symptoms may not go away but if they do great. If they don't use it as impetus to take further action. The liver can fail suddenly and this is the case for diseased and healthy livers. The PSC is very erratic. It can be slowly stewing and never cause much problems or rip through the liver like a wildfire. So in other words you are dealing with 2 highly unpredictable situations - general liver health and PSC.
40 mg/dl Bilirubin is extraordinarily high. High enough to put a person over 40 MELD (which is the highest MELD score possible for transplant). The mortality rate at a sustained level like this is high.
Therefore, if it were my liver I'd ask for a CT or PET scan or a liver US with dye to rule out biliary cancer or abscess. In the upper reaches of the liver that are microscopic the PSC is active and causing damage. These areas which are not able to be reached by scope can become infected and over time cirrhotic and damaged. If a large enough area of infection accumulates you can get an abscess. Either way whether abscessed or just cholangitis this should be treated with antibiotics.
And if his numbers do not go down it may be time to ask for a transplant center consultation. He is very lucky to have 18 years without too much trouble. But that lack of symptoms can lull you into thinking the PSC is not such a bad thing AND that you don't have to do much.
When I was diagnosed with my first biliary cancer they estimate it had been growing for 3 to 4 years. It was the size of a racquetball and infected. And I thought I was getting better over that time because I was relatively asymptomatic compared to my first 10 years with PSC. I was sadly mistaken.
So take some action. Get some baseline data - a biopsy, an US, a CT and/or PET scan. And start asking for a transplant center consultation. All the best!
I realize your post is 3+ months old now so I hope your husband is doing OK. Everyone is different battling PSC - some may go dozens of years with little symptoms or never needing transplant; others, such as myself, spiral-down more rapidly. I was diagnose with PSC in 1990, the first 4-years fairly symptom free then became fatigued and over the following 2-years experienced full-on symptoms, jaundice, itching, weight-loss, etc., until I ended-up in the hospital in 1996 with uncontrollable veraceal bleeding, portal hypertension, stent/shunt, hepatic coma and liver transplantation. I echo Greatdane61’s comment about seeking a liver doc at a quality transplant center. Your husband needs to be followed closely now!
Hello. I can only give you my personal experience as, I’m sure you already know, every case is different. What you should do is have your doctor calculate your husbands MELD score. Also you may want to order a UNOS packet which is free and will give you lots of information. The number to call for this free info is 888 894 6361. I was diagnosed with PSC when I was 16. I will be 30 in April and just went through the transplant process this past September 2011. I am happy to help where I can.