What is a PSC flare?

My daughter was diagnosed with PSC in 2016 and is in early stages. No liver fibrosis with intrahepitatic beading and “sludge”. Her LFTs including ALP are all normal. Her inflammation markers were also normal two weeks ago. She takes 500mg of Ursodiol 2x/day. She had UC from 2010 to 2017 - now has ileostomy. For years she has had episodes of nausea that doctors can’t explain. 3 times since diagnosis she has had severe loss of appetite, mild nausea, and watery output. The first time she had low levels of c-diff but not in the toxic level on the test. She was treated and re-tested and there was no trace. The second time and now she was also tested and she was negative for c-diff. She has no body aches or fever or liver pain. Is this just something that happens when you have PSC?

Unfortunately that is just part of the deal. I’ve had PSC since 2000 and UC since around 1997. Just recently had a colectomy and now getting used to my ileostomy. But yes to answer your question those are all things I’ve experienced throughout the years. I would say as long as it’s just on occasion I wouldn’t worry too much but definitely something that needs to be brought up to both her hepatologist and gastro. I pray for your daughter as I know exactly what she’s going through.

Please look into oral vancomycin. She sounds like a great candidate since no major liver damage. It has put my daughter into a kind of remission. She takes 1000mg ANI brand (brand is important). You can search this site for other positive stories about oral vanco, since, unlike Urso, it can actually reverse the damage. Push for a three month trial although you can probably see results much sooner. Many times, blood work normalizes and physical symptoms improve very quickly. Good luck!

Nausea and loss of appetite are common symptoms of psc. Not sure about the watery output.

Hermes, good luck with your recovery. It will take several months before your body figures out what was done to it and gets adjusted to it. It took me two months to get used to the bag.
And then its time for resection, and the cycle repeats itself. That’s not easy.

Thank you for your reply and prayers. That is a long time to deal with UC. My daughter is much happier with the ileostomy. She had to drop out of college a couple of times due to hospitalizations and is now scheduled to graduate in May…Provided PSC doesn’t get in the way. Good luck with your stoma and God Bless!

Thank you Joki. I will ask her Hepatologist about Vanco at her next visit.

Thank you for your reply. It is hard to navigate PSC. At least UC was pretty straightforward.

At least she is seeing a doctor now and not be stubborn like me. Got diagnosed at 16 saw a few doctors then just quit as I was experiencing no real symptoms for almost 20 years. The UC I just fought the flare ups as they came and just adjusted my entire life around this disease. It totally controlled me and I never even realized. Beginning of 2018 the bottom fell out I had ascites and lost over 30lbs in 3 months could barely get off the couch. Was finally strong enough this January to get my colectomy. Found stage 1 cancer but cured with surgery. Now I’m on the liver transplant list.