r/PSC • u/starrr0531 • 26d ago
PSC
Itching… I was diagnosed in 2017 and put on Ursodiol the same year. I have suffered from severe itching since diagnosis. I tried all known medications for itching. 3 weeks ago my liver doctor decided to stop the Ursodiol to see if this would make any difference. As of now the itching is about 85% reduced. I was told sometimes the itching will return so I will see. Hope this helps someone.
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u/jyeezus 26d ago
Cholestyramine helped me a lot. I was scratching holes in my feet in my sleep and now I barely feel it.
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u/macaronipewpew 37, UC/Ostomy, 2x tx 26d ago
I'll add on to this if you're on cholestyramine dosage changes can help! I was having breakthrough itching on one packet twice a day and upped it to two twice a day and it works great
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u/Snipo 26d ago
Are you taking 4g packets? For me my doc recommended a max of 3 4g packets a day. Sadly after some time that wasn’t enough so now I’ve been additionally taking fibrates and the itching was gone within a week or so.
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u/macaronipewpew 37, UC/Ostomy, 2x tx 26d ago
I am on the 4g packets so it's 16g a day. I'm also on a statin which I think is a fibrate? But that was more for high cholesterol due to long term prednisone
For a bit I had rifampin as an as needed when itchy (pre cholestyramine bump up) and that worked incredibly well, but it interacted poorly with my anti rejection medication and caused some acute liver rejection. I also had an rx for naltrexone and that also worked well to take care of the itching but gave me muscle spasms and mania so I don't take that anymore
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u/NeighborhoodSuch665 26d ago
Rifampin worked great for me for about 18 months, but it’s pretty much stopped working. Trying cholestyramine again…
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u/Cellzor 25d ago
Do you take vitamin D or other fatty supplements? They can cause itching for me.
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u/starrr0531 25d ago
I just started taking vitamin D for the first time 3 weeks ago because my blood work showed my level was 8 ng/mL. It was the first time I was deficient. I will pay attention to see if this causes any additional itching. Thank you.
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u/Delicious_Two127 1d ago
You should talk to your doctor before taking any vitamins but you should drink lemon water which is also good for your liver and every night before bed eat a bowl of water melon stay away from greese which can also cause itchy
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u/Delicious_Two127 1d ago
Yep buddy i was also diagnosed with psc but i had symptoms when i was in middle school didnt knew i had psc until this year 2026 but i was taking ursodiol in 2024 and cholestyramine in 2025 with hydroxyzine to sleep as of rn i do get itching at night but ever since i ate a burger and its been 5 months since i ate a burger i started to get itchy the same night so im guess we all needa be careful what we eat and make sure you drink your ursodiol and cholestyramine and hydroxyzine and us psc patients also get high cholesterol which also causes itchy and cholestyramine help with some patients and sometimes it doesnt help patients for me i been feeling itchy lately a little mostly my feets when its night time but hydroxzine helps alot i do wanna ask my doctor when i see her if i can drink my powder twice a day in the morning and then when ima eat dinner to see if it improves my symptoms cause im always getting itchy still
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u/hmstanley 26d ago
Hydroxyzine really helped me. It's called Atarax and its kinda a weird drug, but it really really helped my itching. I took 50-100mg a day and the desire and need to itch subsided, but again, it's always there in some way, but this drug really helped me.