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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Oldest person with PSC

Hi,
I’m new here and have been diagnosed with PSC about 11 years ago. Also have UC but no flare ups for many years. Doing well and feeling well. My question is, how old (that’s been documented) of the oldest living person diagnosed with PSC to die without a transplant. What is the longest number of years from diagnoses to transplant. I’ve been reading now about 20 years. I’m going on 12 years. Just wondering how much longer I have before typically someone becomes ill. Feeling like a ticking time bomb at times :frowning:

I am at 15 years since diagnosis. No symptoms yet.

I was evaluated for elevated LFT's 11 years ago...officially diagnosed about 2 years ago after a screening colonoscopy should mild colitis...a few antibody tests, an MRCP and voila! PSC. Since my LFT's have been normal. I did have one episode of elevated bili...got a gallstone stuck in a narrowed CBD, required an ERCP, stent, then removed and now about 6 mos out, all back to normal. I get chemistries every 3 mos, probably an ercp every year??? and that is it. I drink wine rarely but other than that, I am essentially "normal" I do totally get the whole ticking timebomb feeling though. I know I have mild to moderate changes (fibrosis) in my ducts so I sppsoe as the text books say this will be a slow and progressive process. No one knows if progression is linear, if people slow progression as they age? or speed up? In the meantime, I take my urso, and sulfasalazine and for the most part don't even think about it. I suppose my day will come, and if I am lucky there will be a liver for me. There are actually plenty of people who are at 20 or 30 years out. The literature will attest to that!!!

I think the problem with PSC is that it is so variable and unpredictable. I am 43, and was diagnosed 6 years ago. All my liver function tests are abnormal, except bilirubin still normal. Based on biopsy and fibroscans, I am nearing cirrhosis stage. Would love to know when to expect the need for transplant... ! :(

I made it 16 years before transplant. No sooner did my doctor tell me that I would probably live the rest of my life wothout a transplant that I was shortly diagnosed with bile duct cancer. So I ended up having a transplant and have enjoyed great live health for the past 9 years. I believe I still have PSC, but now being 61, I will pobably outlive it

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Variable is right!
I was diagnosed in 2009 and they told me I would need a transplant in 10 to 15 years. But things tanked fast after a car accident and I had a transplant in 2012. Just 3 years after diagnosis.

I think a trauma to the body, infection or acute illness can rock the PSC boat. Be careful out there!

Ruby

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I was diagnosed around 1994, ( I was 4 years old). My parents were told I would need a transplant within 8 years, and that would take me to about 18 years old. 20 years on, I'm still asymptomatic, but my Docs are very vigilant! I'm on Urso and Olsalazine for UC.

I was diagnosed with UC in 1976, and with PSC in 1984. Transplanted twice in one month in October, 2000.

I am 75 years old as of Feb 2015. I can't remember feeling better. Of course, There are many things I can't remember.

My most fortunate outcome was that Sulfasalazine resolved my UC as soon as I started it, and has worked very well for me all these years.

I wonder who holds the record for most colonoscopies. I'm surely in the running.

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I was diagnosed in 1993 with PSC. My doctor at one point stated that I would probably be in liver failure by 2004. My illness has progressed very little---no abnormal liver function tests, but I do have some itching (developed two years ago) and discomfort (for many years). I had a dilatation and stenting of my common bile duct in 1998. I am now 68. My doctor says I am one of handful of patients with PSC who have remained stable in his practice. I realize I am blessed and am thankful everyday.

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Khogie3,

I am 43 also and was diagnosed in 2000. All of my values are abnormal except for bilirubin, like yours. And like yours, my biopsies show a progression from stage 1 to stage 3, bridging fibrosis, which precedes cirrhosis. I have only had one ERCP and that was last year and it showed mild intrahepatic scarring. Frankly, just really do not know what to expect from here, but looks like we might be on the same course (with full knowledge, though, that these courses could diverge at any time!) BTW, my latest labs have my Alk Phos at 247 (high end of normal 115), AST 44 (high normal 40), ALT 64 (high normal 46). Bili is 0.4 (high normal 1.2)



khogie3 said:

I think the problem with PSC is that it is so variable and unpredictable. I am 43, and was diagnosed 6 years ago. All my liver function tests are abnormal, except bilirubin still normal. Based on biopsy and fibroscans, I am nearing cirrhosis stage. Would love to know when to expect the need for transplant... ! :(

I was diagnosed in 2000 and transplanted at age 65 in 2012. I was asymptomatic until 2009 when I began to experience liver failure about every 6 to 8 weeks. I would always bounce back in 2-3 days in the hospital. My MELD number never went above 16, yet my doctors said I only had about 15% liver function. I was placed on a transplant list in 2009. In 2011, a transplant surgeon said I would not live long enough for my MELD score to reach 23 (the number at which they would transplant). He said my only chance at survival was to find a live donor, which we did in December 2011. My transplant took place in 2012. The doctors call my liver a "superstar" and my LFT's are outstanding. I am very healthy now, and so is my donor.

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Great question, have often wondered the same. I was also diagnosed in 2000 at the age of 18 (mild psc at the time) and UC a year or two thereafter although have only had a few flare-ups over the past 15 odd years.
I still get confused by the staging but last biopsy looked consistent with cirhossis. I also vaguely remember my gastro saying MELD was 5ish(?) thus too early to meet with transplant unit.
While I’m obviously getting worse have been able to live a normal life and it’s one of those where no one could tell just by looking at you.
Looks like this condition really varies for so many of us. I wish you all the best!

Hi Dakota,

Do you follow any special diet or nutritional requirements? Any exercise you recommend as well?

Eliza



Dakota said:

I was diagnosed in 1993 with PSC. My doctor at one point stated that I would probably be in liver failure by 2004. My illness has progressed very little---no abnormal liver function tests, but I do have some itching (developed two years ago) and discomfort (for many years). I had a dilatation and stenting of my common bile duct in 1998. I am now 68. My doctor says I am one of handful of patients with PSC who have remained stable in his practice. I realize I am blessed and am thankful everyday.

Eliza1976

I have not followed any special diet. For many years I have taken a multi-vitamin, calcium and Vitamin C daily in addition to regular medications. I exercise regularly and for much of the past 20 plus years my weight has been under control. My current BMI is under 25.

eliza1976 said:

Hi Dakota,

Do you follow any special diet or nutritional requirements? Any exercise you recommend as well?

Eliza



Dakota said:

I was diagnosed in 1993 with PSC. My doctor at one point stated that I would probably be in liver failure by 2004. My illness has progressed very little---no abnormal liver function tests, but I do have some itching (developed two years ago) and discomfort (for many years). I had a dilatation and stenting of my common bile duct in 1998. I am now 68. My doctor says I am one of handful of patients with PSC who have remained stable in his practice. I realize I am blessed and am thankful everyday.

Just finished seeing a specialist in the field and asked this very question. Our response was, 'it varies", however, here's the good news - she's got many patients 80 years + still ticking with the disease. She believes in the near future we'll see different "categories' of the disease; she said many people live their lives with it without issue, some have some issues (itching, fatigue, etc.), and some need transplant. Unfortunately no way of knowing, but it's not a "terminal" diagnosis in that once diagnosed, you're on the ten-year-to-death train.

Hope that helps, feel free to PM me w/questions. :)

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My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?

Oh my gosh, sorry, but it sounds like it's time to get some more opinions. Now there may very well be situations where a live donor is not an option, however, every single *qualified* specialist I've spoken to (and unfortunately, there have been a lot now) called live-donor a "wonderful thing."

You might want to try the Mayo Clinic, Phoenix, Arizona (Dr. Aqel, Dr. Lindor) or Mayo Clinic in Rochester, Minnesota (PA Andrea Gossard, Dr. Gores, Dr. Talwalker).



Sarah A said:

My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?

Hi Sarah,

I have a live-donor liver. I got it 3 years ago. I was carefully evaluated for my general health to survive a live-donor transplant. The difference between a live and a cadaver organ is that the live-donor organ is 2/3rds the size of a cadaver organ. Both start functioning immediately, but the live-donor organ begins regrowing right away, thus putting added stress on the patient's recovery. I met cadaver recipients whose recovery took less time and who did not have the prolonged, deep fatigue that I had until my new liver grew to full size (about 5 months). I'm guessing that if a patient has some risk conditions, the transplant team will opt for a cadaver instead of a live-donor organ. I would question the doctors why he could not receive a live-donor organ. If you are not satisfied with the answer, get a second opinion from a transplant center that does live-donor transplantation. It was evident that I would not reach the MELD criteria for a cadaver liver, which is common with PSC'ers. The MELD criteria is flawed and fails to measure how sick a PSC patient is. Be your own best advocate. Question things and if they don't leave you with a confident feeling, get a second opinion.

Sarah A said:

My husband was told he could not have a live donor. I assumed ALL patients with PSC could not use a live donor. Does anybody know when a live donor is used?

Lilly, Paul and Stephen,

Thank you so much for the information about live-donor. Paul I am thrilled to hear about a successful transplant. My husband explained that as of now his autoimmune hemolytic anemia is the reason a cadaver liver would be best. His first transplant was also cadaver. Again, thank you and I will keep you all posted.

Sarah

Following...

I'm really curious about this - I was diagnosed earlier this year and this was one of the first things I wanted to know.. i.e. what is the best possible outcome for someone diagnosed with PSC? I'm still even uncertain about what percentage of people require a transplant..? is it almost everyone or as low as half? My hepatologist gave me the impression that it's quite possible to go 30 or 40 years without a transplant or even never need one, but that just doesn't seem to be reflected by PSC'ers' accounts on the internet, who all seem to be post-transplant or within the 20 year from diagnosis mark. It makes me wonder whether she is just being optimistic for me since it is technically possible given the outcomes are so variable for every one of us...