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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Falling off the cliff?

In several of the posts re: transplants, I noted a recurring theme. People do well with PSC and then suddenly start “falling off the cliff”. As someone who has been about 12 years largely asymptomatic, what does this cliff experience look like? Repeated bouts of jaundice? or acute cholangitis? skyrocketing enzyme levels? Hospitalizations? If anyone could give some more detail that would be welcome.

Steve

Steve,
Hello and thanks for your post. I think one of the biggest things one will notice when they go from mainly asymptomatic will be things like increased itching, a dull lower right back pain, more nauseous, just feeling plain lousy. That was always an indicator to me that my bilirubin had skyrocketed and I needed a ERCP intervention. Those are just a few things to keep in mind.

Mark
PSC 2011 / Liver Transplant 2015

Steve,

I always envision that expression to mean immediate critical status and the need for transplant ASAP, though I don’t think that’s the way it applies to PSC or at least the way it is being used here. I think it more refers to relativity…relative to 15 years asymtomatic declining blood work, perhaps two hospilizations for infections in short timespan and the feeling of constant fatigue/itchiness/nausea can seem like a cliff.

That’s just how I interpret it.

My two cents.

E

PSC can be subtle or in your face.

My first two years were mostly mild with an occasional symptom, but then started having itching, pain, weight loss since my appetite waned, fatigue and jaundice. Sometimes singly, often combined. Occasional ercp’s cleared several cholangitis attacks…

I call hitting the cliff in March and April with chilangitis attacks cleared by ercp’s, with sepsis with the April one. These were followed by severe pain that put me in the hospital in early May. Transplanted in June.

Jeff,

Now that’s what I would describe as falling off the cliff. I had always assumed the progression would be more gradual. I’m grateful your sepsis was cleared out and they were able to transplant you. May I ask, how did the occasional ecrp clear the cholangitis. I just had a long bout of cholangitis, (in my opinion caused by an occluded stent-which has since been removed), that was difficult to clear up.

Steve

The procedure was done under anesthesia. A scope is shoved down my throat, past the stomach and takes a right at the liver. At the end of the scope is a set up that allows the doc to insert a tiny balloon that he inserts into the blockage and when he inflates it, the blockage gets cleared. Sometimes a stent is required instead of the balloon.

It is a wonderful tool, but in being invasive, can cause some side effects like pancreatitis and other unfriendly things.

I’m not entirely sure falling off the cliff may only apply to PSC. I suspect some of it may be down to progressing from the compensated to decompensated stage of cirrhosis. From my experience I knew things were getting progressively worse for quite some time but it was a relatively slow change. However, from showing first signs of decompensation to being listed for transplant, progress and rate of change was much quicker.
Its a bit strange for me to comment on symptoms as I was only diagnosed after transplant. The course of my disease seems to have been pretty atypical for PSC but not untypical for general progression of cirrhosis. What I will say is I definately had much more issues and felt much more unwell in the last 12 months pre-transplant than I did in the 6 years prior to that. It was the more typical cirrhosis issues that got me me. My blood test results did get worse, but had been pretty constant at their abnormal levels throught the whole period. The ones that did worsen considerably were the likes of albumin and sodium. What you do notice is that you tend to feel sick a lot more too and get much more tired.

“Falling off the cliff” is one of those terms that mean different things to different people. I went from being asymptomatic for seven years to water retention, memory loss, itching, liver failure events from which I recovered quickly, disruption of sleep/awake cycle, tiredness, confusion, joint and abdominal pain, easy bruising and bleeding that was difficult to stop. It kept getting worse and worse while my MELD was only 18. Liver biopsy showed Stage IV Cirrhosis. Received a living donor liver transplant at that time. That was 5.5 years ago. Everything is good now.

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Paul,

How quickly did you go from asymptomatic (which is where I am) to the numerous symptoms and then transplant?

Steve

Hi Steve,
Becoming symptomatic happened fairly quick. It took about six months. I reported changes to my hepatologist who adjusted my medicines. He increased imaging (MRI, Ultrasound ) and had me draw labs more frequently. I learned from him that they wanted to aggressively treat the symptoms so as to keep me going as long as possible while they had me on the transplant list. I saw him or his PA every month. He told me I verbalized how I felt very descriptively and that helped him prescribe treatment. The more you talk, the better they know what is going on. Feel free to ask questions. Do you have any symptoms yet?

Paul

Paul,

Generally I’m asymptomatic. I had a bilirubin spike in May, went up to 17, then began self-resolving. However an ERCP was performed and a stent placed. It became occluded and an infection set in. I was on and off antibiotics, including two weeks of a PICC line from June to Oct. Its been six weeks since the infection is cleared out and I’m feeling great. During the acute cholangitis I began to wonder if this was the beginning of the move toward transplantation. Now I’m just looking forward to ignoring my PSC until it lets me know its there.

Hi sgrabiner
I’m asymptomatic too. The most terrible things of psc is that no one can predict the nect trick of disease. It can be calm or it can be mad.

I think the best answer is there is no one answer. Asymtomatic can last for years or decades. But, some people are feeling bad when diagnosed. In my case, I felt pretty good for two years and then fatigue and brain fog set in and got worse. over the next twelve years I had several bile duct infections but have had none in the last four years. At the same time I had terrible itch but it was cured by acupuncture and never returned. After a total of 17 years, no pain, no itch just fatigue and brain fog. I’ve got early stage cirrhosis. There are probably thousands of PSC patients with different experiences.

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