PCS symptoms

I had PCS since 2008 (when I was also diagnosed with UC). I know when I have gut problems but with PSC I rely on liver functions to know whats going on. What symptoms do I need to watch out for with PSC?

The ones I had were among the milder ones:
Feeling like crap
High temp-over 101.5 was when I went to the ER
Abdominal pain

The more dangerous ones include:
Esophogeal Varices-that can kill
Hepatic encephalopathy

Keep in mind that PSCers tend to have low levels of vitamins A, D, E and K. These can have their own short/long term issues as well. I had to specifically ask to be tested for these levels. They seem surprised when I asked.

Hi- My 14 yr old son was diagnosed with Chron’s last year & PSC most recently. His doc started him on oral vanco 3x/day & liver enzymes normalized (almost) after the first few weeks, if I remember correctly. He was on it for a few months… but his doctor stopped the vancomycin recently. I have no idea why. I wasn’t at that last visit to ask questions… but I do know that he will be getting more bloodwork in a couple weeks. Perhaps they are learning that short term oral vanco has the same affect as long term? I will certainly share more info when I find out. Pretty crazy how quickly it works for some people. :hugs:

I could be 100% feeling great but in an instant and for no reason a dull ache would happen upper stomach. Just like flicking a switch.
There was nothing I could do at that point just go and lay down and drink loads of water, within couple of hours the pain was off the scale.
In 24/48 hrs I wake up and all pain is gone .
Urine is now dark brown,stools are grey/white.
By next day jaundiced. Keep drinking by end of week all should return to normal.You know because suddenly you are hungry . :wink:

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Sounds like a cholangitis attack. When this happens, have you taken your temp?
My standing order was that if/when the temp hit 101.5, get to the ER. Do you have anyone that can check in with you/take your temp when you might not be able to?

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Hi Jeff, you may find this difficult to believe but I’m in UK and although diagnosed by leading consultant never had any meds or treatments. Only one time my GP panicked sent me to er who kept me for 7 days but did nothing except lots of pics of my liver then I went home .
Pretty much that’s it .My last attack about 18 months ago .
Still get bouts of itching, think it’s down to bile salts eg my tears are so salty they sting my eyes . Who knows eh ? :wink::pray:

What was your last bilirubin level reading on your labs? Are you under the care of a hepatologist there in the UK? I know of at least one excellent transplant hospital there and have seen interviews of PSC patients who got very good care. I’m wondering with the extent of the itching you are having if you don’t need to have an ERCP to clear out any strictures in your ducts.


Could you explain what those more dangerous ones are? The esphogeal varicies do they occur if you’ve only got PSC and no intestine issues diagnosed?

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To me, the worst two symptoms of PSC are:

  1. Esophageal Varices-these are veins the body creates to get blood through an increasingly hardening liver. They are known for being a weaker vein, and bulge into the esophagus. If they burst, you could bleed to death.

Quite a few members have had these, and there is a procedure called banding that helps remove the danger. I do not know if other diseases can cause it.

  1. Hepatic Encephalopathy. This is cause by the liver not removing ammonia before it gets to the brain. It can cause a person to have symptoms similar to dementia.-forgetfulness, mood swings, anger…

One thing insidious about this is the change in lifestyles it can bring for you, spouse, family, like not being able to drive (for a period of time)


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