I have seen couple of studies saying median time from diagnosis to either transplant or death us 10-15 years. More recent Dutch study concluded median time is 20 years (maybe because earlier diagnosis in the Netherlands?).
So, by definition, about 50% of psc patients survive longer than those median times (some surely significantly longer). So >30 years sounds realistic.
I heard that the first vanco treated psc patients are doing fine (>20 years from diagnosis, treated in mid 1990s).
Thanks for this post Ted, I hadn't heard of vanco before so looked it up - seems very promising! Going to mention this one to my gastro/hepatologist next time I see her...
Ted, do you know if they are still in remission with the Vanco?
Dr. Cox had a presentation in 2012 with some stats. The first patient was treated in 1998 and as of 2012 Dr. Cox had treated 33 patients. All of the patients either normalized or had improvements in biopsies/imaging/LFTs, most saw improvements in IBD, and no patients experienced significant side effects. There was no mention of endpoints (transplant, cancer, death) for any of the patients.
http://sm.stanford.edu/archive/stanmed/2011spring/article6.html
I think first patient was treated in 1993. I spoke with one of the researchers recently and got impression that all early patients (children/teens) are fine, as far as they know (I.e. no transplant/death).
Ted, you are right on the first treatment date. It is 1993, not 1998.
I was diagnosed with PSC in 1991 after returning from the first Iraq war. I was in a very advanced stage and was admitted to the hospital on Christmas Eve with liver failure. They took out my destroyed gall bladder and I spent 11 days in the hospital because of the liver failure. I am now 71 and I am asymptomatic except that I get tired when backpacking over 7-10 miles. I have not had a liver transplant and no other medical treatment. I do not take medications except for a baby aspirin. My labs including liver enzymes are normal or close to normal. When I tell Doctors that I have PSC they often donāt believe me until they review my medical file. I still work as a Physical Therapist and actively run, bike, XC ski, hike etc. I do not worry about when I will die, I count each day as a great blessing. (I may die from being eaten by a Grizzly as I sometimes hike alone for my photography addiction in my home state of Montana.) I have no idea how long you can live with this condition but I am now 26 years out without any current symptoms. BTW PSC has been a great teacher for me. When people come to my physical therapy office I can truly say nothing is impossible.
I know I have been very fortunate and my wish for you is that you never give up hope, it is the first key to recovery.
Welcome Lance, to the PSC forum and thank you so much for your positive and hope-inspiring post! Weāre glad that you joined us, and we hope that you will continue to support others with your positive outlook.
Youāve revived one of our older threads, which is great! By doing so, the others on the thread will be notified by email of your comments. Since they last visited, we have changed platforms, so I should give them the instructions for logging into our new system the first time:
How to get back into our new PSC platform:
Easy. I hope weāll see everybody come back for what I call a āThread Reunionā!
Seenie from Moderator Support
I was diagnosed in 1997 and my lab tests are closed to normal now except for ggt (3 times greater that the upper normal limit). I take urso and rifadine to stop the itching. Iām only tired for the moment.
The disease is progressing very slowly.
pstriolo,
Hello. Iām glad to know that your PSC is progressing slowly and that you are doing so well. That is wonderful. I hope you have many more quality years of life. And yes, tiredness sure is one of the side-effects in living with PSC. Good to hear you chime in!
Mark
Great news Lisa1 ! We are new to PSC. What types of vigilant monitoring do your docs do? Just want to make sure we are getting the best care. Thanks 
Continuing the discussion from Oldest person with PSC:
Iām 76 and was officially diagnosed with PSC in 2015 when I jaundiced. Have had Crohnās for many years with resection in 2002. Looking back it was 1963 when I tried to give blood and had an elevated ggt that was the first indication of liver involvement. Alcohol was imbibed only occasionally. Pruritis was a problem for a number of years without answers. No one connected the dots. I developed ascites for the first time in July and have responded to diuretics. Saw the Medical Director of Liver Transplants yesterday. Meld score too low and age too high for LT. So my pacing was slow-may it continue that way.
I was 65 when I was transplanted. I was told age was not a factor. But, if your general health is poor, it may disqualify you. PSC MELD scores are low because the MELD metric does not measure the health of a liver with choleostatic disease which PSC is. I stopped waiting on the cadaver list after 3.5 years, eight episodes of liver failure and only a MELD score of 16. I went to a transplant center that did living donor transplants. You find your own donor. I was transplanted 6.5 years ago.
I was searching online for how long to live with PSC(brought me here, where I have been many times) as I have had this mysterious disease almost 30 years now. I keep feeling like Iām living on borrowed time. Iām 59 years old. Iāve had UC since age 13(on Safasalazine) in remission. Have colonoscopies every year. Too many to count!! On Urso. Bloodwork is good currently. Not always. Have bloodclot in right hepatic vein and last MRCP showed small spots on my spleen. So far no cholongitis attacks & no signs of cancer, but I do get some discomfort to my right side and my shoulder (towards my back). I also have more fatigue. But I too try and put it out of my mind, best as possible, to move on with life, every day! My hepatic Dr. also said people with PSC possibly can live a full life without transplants. (From all Iāve read, I gather they are a minimum). But, I shall not give up hope!! Glad to hear others stories on this subject. You start to wonder when you have it so long. I do count my blessings!!
Jane
I was 50 when diagnosed, but had a shorter road than Janie as I was transplanted 4 years later. UC was not my friend either-never could get it in remission.
30 years of living with PSC? Wow. That is a boatload of uncertainty to live with. When I was researching psc after being diagnosed with it, I found a quote that pscers are more likely do die with psc than because if it. I guess that depends on your viewpoint.
Jeff
Wow! So many positive stories! I hope I can get healthy and on to a longest survivor panel!
I was diagnosed 2 years ago and have been having symptoms for the last few monthsā¦ these last two weeks have been terrible. Iāve got an appointment in 6 days. I can hardly wait. Iāve got the low grade fever and fatigue, but the worst is the itch.
Derek,
Welcome to the forum. Iām glad you joined us and I hope the information you find here will prove invaluable to you. I do hope you are seeing a hepatologist associated with a liver transplant center. This is the type of doctor you should be seeing for your long term care. There are a number of different approaches to controlling the itch and it seems to be different from person to person. I would recommend you trying a prescription medication called āRifampinā. I took it for 4 years from diagnosis to transplant and it was the only thing for me that brought relief. Up to 95% relief. I took 300 mgās twice a day. Perhaps it would help you.
Take care and please feel free to ask any questions. We are here for you.
Mark
PSC 2011 / Liver Transplant 2015
@fcmmark thank you so much for responding right away! I have a liver specialist, I assume heās a hepatologist. Heās located in London Ontario in the transplant wing of the hospital. Iāll ask him about rifampin. If thereās a chance of reliefā¦ Iāll do anything.
Thanks again!
Derek, I hope you get good news.
Jeff
Hi again! I meant to respond earlier. I saw my specialist, my itchiness is not from my liver but instead an allergic reaction to my Remicade. (They think) Iāve been on prednisone now for 12 weeks straight, itās not my favorite. However itās keeping the reaction at bay. I was also on it just prior to the reaction. The doctors gave me a cat scan, an MRI tons of blood work, and an appointment with a dermatologist. Thatās on the first of April. Iām still very itchy, however my skin isnāt falling off anymoreā¦which is good. So thereās the silver lining!