Recently Diagnosed with PSC

Hi All, I was recently diagnosed with PSC, stage 2. My general symptoms include nausea, vomiting, fatigue, some itching ( especially at night), diarrhea. I noticed what I think look like spider angiomas on my upper abdomen, also on my biceps on both arms. I also have had ulcerative colitis for the last 10 years. I know that the disease will progress differently for each person, but can anyone share their experience with how quickly their PSC progressed. My Dr. does not seem to be too concerned at this point and that the spider angiomas are just a coincidence. Thank you in advance for any experiences/suggestions.

Chris Lewis

Chris, sorry you received this diagnosis. One good thing about psc is that is can progress very slowly. When I was diagnosed in April 2013, I was told the damage was on the border of moderate to severe. In March 2015 after a cholangitis attack, I was told the liver damage was severe.

The thing about psc, while it can progress slowly, stuff can happen at anytime, and it is very individualized. Luckily, I have not have the vomiting, diarrhea or the spider angiomas. This link shows that it is common in people with liver disease:

https://www.nlm.nih.gov/medlineplus/ency/article/001095.htm

I never knew that. Looks like not much can be done except for the laser treatment, I guess if it gets really bad. That would likely come from a conversation with a dermatologist-no wonder a liver doctor did not seem concerned.

Any other thoughts out there?

Hi Jeff, If you don't mind me asking, what were your symptoms when you were diagnosed with PSC?

Chris,

While at work in April 2013, I knew I had some low-grade abdominal pain for about two hours that was about halfway between my belly button and sternum. When it began to radiate to my back, I knew nothing good was happening.

I had pancreatitis three times previously, and I had those symptoms each time

So a trip to the ER showed it was not pancreatitis, but they were not happy with my liver levels. An ERCP the next day showed psc.

I was diagnosed early on when they were checking labs for mononucleosis and was asymptomatic for 12 years aside from steadily increasing fatigue. At year 13 the symptoms you described hit me hard and were a big deal because whenever they flared it signaled a cholangitis attack. If you feel chills or run a fever, get in touch with your doctor for antibiotics or make a trip to the ER. Make a game plan with your doctor about what to do in this situation. Is your doctor doing anything about treating your symptoms? An ERCP may be warranted to help alleviate symptoms if there are obvious strictures.

I developed lots of bumps on my skin likely due to all the itching I was doing. I also developed random swelling in my face and extremities whenever I had a cholangitis attack. When your body gets stressed out, lots of weird things can crop up.

I bring this up a lot because it is often overlooked: has your doctor checked fat soluble vitamin levels (ADEK)? As PSC develops we have a hard time absorbing these vitamins and this can lead to a number of issues including osteoporosis.


Agree on the fever. My liver doc said that if I had an unexplained fever of over 101, to get to the ER.
jtb said:

I was diagnosed early on when they were checking labs for mononucleosis and was asymptomatic for 12 years aside from steadily increasing fatigue. At year 13 the symptoms you described hit me hard and were a big deal because whenever they flared it signaled a cholangitis attack. If you feel chills or run a fever, get in touch with your doctor for antibiotics or make a trip to the ER. Make a game plan with your doctor about what to do in this situation. Is your doctor doing anything about treating your symptoms? An ERCP may be warranted to help alleviate symptoms if there are obvious strictures.

I developed lots of bumps on my skin likely due to all the itching I was doing. I also developed random swelling in my face and extremities whenever I had a cholangitis attack. When your body gets stressed out, lots of weird things can crop up.

I bring this up a lot because it is often overlooked: has your doctor checked fat soluble vitamin levels (ADEK)? As PSC develops we have a hard time absorbing these vitamins and this can lead to a number of issues including osteoporosis.

My Dr. has not yet checked ADEK, these are all questions that I have since I was recently diagnosed. I will be seeing a specialist at the end of October and hope to get more questions answered then. I was diagnosed with Stage 2 PSC, but think that I may be further along than that since I am seeing spider angiomas on my upper abdomen and biceps, constant diarrhea and weekly vomiting.

Those are three symptoms I am thankful I do not have.

chrislewis said:

My Dr. has not yet checked ADEK, these are all questions that I have since I was recently diagnosed. I will be seeing a specialist at the end of October and hope to get more questions answered then. I was diagnosed with Stage 2 PSC, but think that I may be further along than that since I am seeing spider angiomas on my upper abdomen and biceps, constant diarrhea and weekly vomiting.

Hi there,

It seems that different people progress differently. I've had a for quite a few years and my main symptoms are itchiness and fatigue. You definitely have to stay on the watch for fever. I've found maintaining a healthy diet helps with my symptoms. Also, always staying upbeat, cheerful and positive definitely help.

Feel good,

Had it for 8 yrs now. Only symptoms are jaundice and itchiness. Never had cholangitis or fever. Jaundice came and go. I don't have dominant stricture so nothing can be done to relieve it. I noticed that recently jaundice happens more often. Usually once a yr, 3 times already this year. Just talked to a GI doctor friend. He suggested that I got listed for transplant in case things go wrong too fast.