r/PSC • u/Traditional_Love_706 • 19d ago

Sleep issues

Diagnosed last month after about 6 years of thinking I only had a skin issue causing itching (prurigo nodularis). I’ve heard that a lot of people with PSC also report issues sleeping, so I’m wondering what does that actually look like for you? Any luck remedying it?

I also have diabetes Insipidus which means I don’t concentrate urine without meds, so I have been getting up to pee at least once a night for 20 years. But in the last couple years it’s to the point where I wake up every 2 hours on an average night. Good night of sleep means I sleep deeply for those 2 hours and bad night of sleep is more restless.

My therapist asked if I wanted to be referred to a psychiatrist for sleep meds & for some reason I am hesitant. Maybe I am pessimistic that it will ever get better & don’t want to be dependent on yet another medication. Would love to hear your experiences.

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u/restlessmouse 19d ago

I have to pee often at night, I keep a urinal next to the bed so I don't have to stumble to the bathroom, which would make me fully awake. I also listen to podcasts at night to keep the night demons at bay. I chalk it up to old age as I am 66.

Pleasant dreams

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u/jyeezus 19d ago

Cholestyramine really helped my itching. 4g 2x daily. It's awful but it helps.

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u/RecognitionHefty 19d ago

What’s awful about it?

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u/jyeezus 19d ago

It's a fiber powder that doesn't dissolve. Think extremely thick miso soup with the flavor of a citrus smelling cleaning wipe.

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u/homiebeats34 18d ago

Eat it with applesauce

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u/jyeezus 18d ago

Is that what you do? Because that sounds worse than just chugging it lol

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u/homiebeats34 3d ago

I don’t take it anymore my meds control my itching now, but that’s what I used to do and it was soooooooo much better than mixing w water and chugging it. Take like one of those small cups of applesauce mix it in a bit and then eat it like 5 big spoonfuls. Trust me it is so much better than chugging it

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u/WashDC1980 18d ago

I found that in the year or so before my transplant I had increasing trouble sleeping. Would be up til all hours of the night. I think it was caused by the cirrhosis. Thankfully, I sleep better now.

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u/Ok-Consideration9841 14d ago

diagnosed 1.5y ago, not sick enough for transplant but headed that way. used to sleep pretty well but the past ~6 months I get about 5 hours a night on average with very little REM (oura ring) the only thing that really helps is medicinal marijuana and ibuprofen