I know that no two people are the same… But I am curious
Do you have small or large duct PSC?
How many years from diagnosis or symptoms until transplant was needed?
I was told large duct progresses faster, just curious if people’s experience confirms this.
My daughter has been diagnosed 3 years very few symptoms. Bloods good most of the time
I have the small duct type diagnosed 3+ yrs ago. Transplant time is ASAP. Many symptoms, MELD score 26.
EAD3
Hi Jen,
small duct PSC diagnosed in 2011 but probably existing since childhood, no transplant so far, and lots of hope for survival without transplant (at age 66 chances aren't that bad I guess)
So: good luck to your daughter!
Rippi
I have the small duct kind and was diagnosed July, 2012. It's progressing very
rapidly, so my doctor said it's time to be on a transplant waiting list. I'll see the transplant
doctor this week.
Marylee
I have small, faze 1, diagnosed in march 2013. They find it by coincidence. I take strong antibiotic drugs. I become yellowed, pale stool, etc... after two weeks when i going off the drug. My doctor insisted to do biopsy. While all my blood, bili, whent down to normal at the time widouth any drugs and ERCP. I dont have UC, and my antibodies tests are ok. Now i dont have simptom like before.I probably havit it for years widouth knowin it and i hope for slow progress. MY doctor said that he cures one young boy who have cirrosis for 6 years now, widouth any simptom. So evrything is posible.Best to you. ED
Hello Ed,
this sounds to some extent like my history: I had "liver attacks" about every 12 to 15 years, blood values ran wild, and everything disappeared within 2 weeks and no diagnosis. doctors were helpless. I had this 5 times now, last time in 2011 the doctor did not give up and finally found traces of small duct congestion in one of four deep biopsies. i consider the diagnosis as solid (after lots of reading in the Internet) .
i have symptoms like extreme tiredness, wide awake at 3 am when the liver starts working, but i learned to live with it, and at age 66 i doubt that i might experience drastic improvements. i take UDC (4 * 250 mg) and see my doctor every 3 months for a liver check. i wait for NOR-Urso to become available, may be it helps to clean out the small bile ducts more efficient than the current URSO. we will see ...
best for you
Rippi
very strange! as you can see in my reply to ed, articles in internet, and my history, your small duct PSC looks very atypical. maybe you should check again if it is "only" small duct PSC!?!
regards
Rippi
Marylee said:
I have the small duct kind and was diagnosed July, 2012. It's progressing very
rapidly, so my doctor said it's time to be on a transplant waiting list. I'll see the transplant
doctor this week.
Marylee
I, too, am 66. My hepatologist was very surprised at the rapid progression of my disease. Stage II to stage IV in a little over a year, despite every 3 month follow up. Black bowel movements were the tip off that I had bleeding varicies. I've now had them tied off 3X over the past year. I'm in the process of getting on my second medical center transplant list. Repeat ERCP tomorrow. Great hope for improved life after transplant.
EAD3
rippi said:
Hello Ed,
this sounds to some extent like my history: I had "liver attacks" about every 12 to 15 years, blood values ran wild, and everything disappeared within 2 weeks and no diagnosis. doctors were helpless. I had this 5 times now, last time in 2011 the doctor did not give up and finally found traces of small duct congestion in one of four deep biopsies. i consider the diagnosis as solid (after lots of reading in the Internet) .
i have symptoms like extreme tiredness, wide awake at 3 am when the liver starts working, but i learned to live with it, and at age 66 i doubt that i might experience drastic improvements. i take UDC (4 * 250 mg) and see my doctor every 3 months for a liver check. i wait for NOR-Urso to become available, may be it helps to clean out the small bile ducts more efficient than the current URSO. we will see ...
best for you
Rippi
Hi Rippi,
Yes, there are other things going on. I have CUC, prurites, ascites, pain, weight loss----
I'm taking Urso, Questran, Lasix, Spironolactone and I'm not responding to these meds.
too well. When I had a liver biopsy in June it showed start of cirrhosis and no cancer.
My doctor is concerned that I do have cancer going on somewhere, possibly the bile ducts
according to my symptoms. I just saw the liver transplant people and I will have a CT scan first and more blood work
done next week to see if there is cancer in addition to PSC. By the way, I am your age. Have you done any
research on bile duct cancer.
Marylee
rippi said:
very strange! as you can see in my reply to ed, articles in internet, and my history, your small duct PSC looks very atypical. maybe you should check again if it is "only" small duct PSC!?!
regards
Rippi
Marylee said:I have the small duct kind and was diagnosed July, 2012. It's progressing very
rapidly, so my doctor said it's time to be on a transplant waiting list. I'll see the transplant
doctor this week.
Marylee
Hi Marylee,
it looks like your PSC is a normal one and is progressing accordingly. Sounds negative but it isn't THAT bad: with transplant you'll have some 12 to 15 years with no problems at all (liverwise), And then - if at all - the PSC-problem may restart slowly. This I know from people here in Germany having had a transplant. All say that it is really worthwhile to go for an early transplant. They claim living without symptoms is a quantum jump in life after PSC.
So go ahead and all my best wishes for your health
Rippi
Marylee said:
Hi Rippi,
Yes, there are other things going on. I have CUC, prurites, ascites, pain, weight loss----
I'm taking Urso, Questran, Lasix, Spironolactone and I'm not responding to these meds.
too well. When I had a liver biopsy in June it showed start of cirrhosis and no cancer.
My doctor is concerned that I do have cancer going on somewhere, possibly the bile ducts
according to my symptoms. I just saw the liver transplant people and I will have a CT scan first and more blood work
done next week to see if there is cancer in addition to PSC. By the way, I am your age. Have you done any
research on bile duct cancer.
Marylee
rippi said:very strange! as you can see in my reply to ed, articles in internet, and my history, your small duct PSC looks very atypical. maybe you should check again if it is "only" small duct PSC!?!
regards
Rippi
Marylee said:I have the small duct kind and was diagnosed July, 2012. It's progressing very
rapidly, so my doctor said it's time to be on a transplant waiting list. I'll see the transplant
doctor this week.
Marylee
Hi Rippi,
Thanks for your words of encouragement. I had blood work done yesterday and will have a CT scan next week. They want to rule out bile duct cancer, before they do the evaluation for the liver transplant. I can't have an MRI because
of coils I had placed in a brain aneurysm 2 years ago so they have to do a CT scan instead. I also have multiple sclerosis, so I don't even know if I'll be a candidate for a transplant. I'll know more next week.
Marylee
rippi said:,
Hi Marylee,
it looks like your PSC is a normal one and is progressing accordingly. Sounds negative but it isn't THAT bad: with transplant you'll have some 12 to 15 years with no problems at all (liverwise), And then - if at all - the PSC-problem may restart slowly. This I know from people here in Germany having had a transplant. All say that it is really worthwhile to go for an early transplant. They claim living without symptoms is a quantum jump in life after PSC.
So go ahead and all my best wishes for your health
Rippi
Marylee said:Hi Rippi,
Yes, there are other things going on. I have CUC, prurites, ascites, pain, weight loss----
I'm taking Urso, Questran, Lasix, Spironolactone and I'm not responding to these meds.
too well. When I had a liver biopsy in June it showed start of cirrhosis and no cancer.
My doctor is concerned that I do have cancer going on somewhere, possibly the bile ducts
according to my symptoms. I just saw the liver transplant people and I will have a CT scan first and more blood work
done next week to see if there is cancer in addition to PSC. By the way, I am your age. Have you done any
research on bile duct cancer.
Marylee
rippi said:very strange! as you can see in my reply to ed, articles in internet, and my history, your small duct PSC looks very atypical. maybe you should check again if it is "only" small duct PSC!?!
regards
Rippi
Marylee said:I have the small duct kind and was diagnosed July, 2012. It's progressing very
rapidly, so my doctor said it's time to be on a transplant waiting list. I'll see the transplant
doctor this week.
Marylee
Hi Jen,
My son was diagnosed in January with UC/PSC & Autoimmune Hepatitis. He just turned 17 in July. I finally got the nerve to ask his Dr.'s in an e-mail about liver transplant information. They are supposed to contact me via a conference call. I still haven't heard from them. I read a post on here a few months back about a PSC patient that has a living donor. I want information on how to get tested. My sons PSC seems to be in remission thank goodness. His UC is not. He started Remicade infusions a few months ago and he has not noticed any changes. The Prednisone didn't work either and he was on that for quite some time. In the early stages of diagnoses he had an enlarged liver, spleen, kidney & aorta. His organs are all back to normal and his blood work is good, however I've recently noticed enlarged lymph-nodes in his neck.
I think finding out if I am a match will be a peace of mind for both of us. I know there aren't any guarantee's but I really need to know.
They have not told us if one progresses faster than the other. I'll be sure to ask that question.
AJ