Hi all. I am new here. But not new to PSC, although my course appears to be somewhat unusual. I was diagnosed twelve years ago via liver biopsy. I did not have symptoms and my MRCP really didn't look abnormal. My liver enzymes were mildly elevated (215 alk phos). The biopsy report showed stage 2 PSC.
Over the twelve years, I have remained asymptomatic and my blood tests remained stable. Two more MRCPs over the years (most recent last February) were normal.
Had a biopsy Friday and it shows stage 4, cirrhosis. Blood test remained as usual...mostly normal but alk phos 231. Albumin was 4.5. Bili was .7.
Still no symptoms.
So does the cirrhosis diagnosis on biopsy mean I am surely headed for transplant list?
Hi JP. Wonderful to hear that you've been so well for 12 years!! I don't have enough experience to answer your question, but my son's biopsy showed stage 3 and he's never had elevated bilirubin at all. His symptoms are all GI related. Do you think it is possible that the cirrhosis is limited to part of your liver, hence your body's ability to function well? I have heard mention of an MRE and a certain type of ultrasound (neither of which is available at our hospital)... perhaps somebody who knows more about these can comment?? I am curious to know why they did a biopsy if you are symptomatic.
Hi JP. I am interested to see if you have had any feed back or info on why your biopsy showed stage 4. I too have asymptomatic PSC I had one biopsy initially but since then have been monitored by my labs, MRCP and symptoms only. It doesn't make sense to me that you would have had worsening cirrhosis with no other worsening signs.
Hi mom to psc teen and carolq. Thank you for your responses.
With regard to the first question, I had a biopsy because they noted high liver enzymes and I had a history of ulcerative colitis (had j pouch surgery) and the MRCP really did not show anything. So that's why I had the original biopsy. I had the second biopsy because twelve years later the MRCP showed nothing and blood was stable and we just wanted to see what was going on.
Since I posted here, I had my biopsy reviewed by a highly regarded pathologist and she disagreed with the Stage 4, stating pretty clearly it is Stage 3. She also noted I likely have the small duct variant of the disease because the large ducts look good on MRCP. My doctor says it is not unusual to have no symptoms at this point, especially with small duct psc.
I have lots to be thankful for. Best to you and all who are dealing with this, especially those very sick and waiting for transplants and those who are dealing with the cancer.
The problem with biopsy is that it is a very local test. The only thing that can be said after a biopsy is that at the place the biopsy was taken you have cirrhosis. The liver is a large organ and it can function fully on only 30% of its capacity. Getting a biopsy result of cirrhosis after you had a normal MRCP in February would suggest either sudden deterioration of your situation, or a localized cirrhosis. Since you are asymptomatic I would guess you have localized cirrhosis, but I am not a doctor and I am only talking to you as someone who reads a lot about PSC as a patient. I also agree with mom of PSC teen that I don't see a reason to perform a biopsy when you are asymptomatic. If you can get an MRE that would be the best way to check how wide spread the cirrhosis is.
JP. Glad to hear that the cirrhosis is not as advanced as they had originally thought! Chaim I also have been under the impression that no biopsy is needed if you have no new developments or worsening symptoms. Thank you for posting; it is good to see what others with the same problems are dealing with.
From what I gather, the biopsies were necessary because my MRCP's were not showing anything and there was no way of staging my disease or confirming small duct psc without biopsy. There is really not much to be gained except for knowing where I am in progression, which helps me plan for the future. Now I can plan a little better. I have to come to grips with the fact that I certainly have progressive small duct psc and, perhaps, in the next ten years, will be dealing with some issues (hopefully longer).
I am sure you are glad you had this biopsy done to know where you stand. I was just kind of wondering if I should question my physician to see if it will be necessary for me. I also have small duct PSC that has been slowly progressing. I did decide to experiment and started on a gluten free diet (I know this is not thought to be connected within the medical community) and have had very dramatic drop in my AP and other enzymes with in a short period of time. I had to go back 10 years to find when my enzymes were this low. So needless to say I will stay on this diet to see what happens.
I do not mind at all. Here is my story i a nutshell, hope this is not too lengthy: I have had elevated liver enzymes for at least 10-12 years. I had been to several physicians and GI over the years who had drawn labs etc. I started to have hospitalizations for acute pancreatis, had my gall bladder removed, was diagnosed with sphincter of oddi dysfuntion in which he corrected during an ERCP (no more pancreatitis after that). Still had increasing liver enzymes and visited yet another GI who diagnosed me with autoimmune hepatitis and started me on steroids. This was when I had my biopsy 5-6 years ago. (I think it was more than stage 1 or 2 cirrhosis. I had no response from steroids. I then searched for a new physician and found a liver specialist at St Louis University hospital. This is where I was diagnosed with PSC approx 5 years ago. So who knows did I have this 10 years ago undiagnosed or did all of the surgeries etc. trigger the PSC? My enzymes were very high at that time AP was 575 and my AST and ALT were both over 200. I was taken off of the prednisone and started on high dose Ursodiol which decreased my enzymes by half. They have begun to slowly climb again over the past 2 years which led me to try gluten free. Do you have a similar situation?