Hi all-I’ve read many previous posts about the itching. So in my daughters situation she has completely normal bilirubin so not caused by that. Dr thinks its the bile salts being absorbed into her bloodstream. Knowing that-has anyone had similar issue and what meds worked?? Her hepatologist just started her on Urso. She’s headed off to college in a week and I so want her to find some relief 
Thanks in advance!!!
The only thing that would get rid of the itching from bile salts with me when I had PSC was a prescription medication called Rifampin. I took 300 mg twice a day for over 4 years. It brought sanity back to me after all that itching. Every patient is different though, but that’s one thing she could inquire with her hepatologist about.
Mark
I would consider oral vancomycin. Stanford docs found that proper dose and brand of oral vancomycin helped with their patients itching. Let me know if you need information.
I have been on URSO for some time, and my itching started years afterwards.
Some people suffer intermittently, and others on a more persistent basis.
I have had some good experience with doing a 36 hour fast, once a week, over about 5 weeks. It is anecdotal of course, as I do not know whether the itching would have subsided on its own without intervention, but after a short increase in intensity during mid to later in the fast (no calorie liquids and some plant based milk in coffee), I experienced relief for just shy of a week. The intensity went from a 9-10 to a 1-2.
After about 5 weeks, I am not itchy at all. At the moment, I will be continuing with 24 hour fasts once a week unless the intensity increases and I will increase to 36 hr.
My itchiness has been high, usually without a bilirubin level over the acceptable range.
There is a degree of work on the benefits of fasting for other autoimmune illnesses so I figured I would give it a try.
As you are aware, PSC varies greatly between individuals.
My personal.experience only.
I would also try to keep fats down…bad foods that is.
My itching started about 5 years before my diagnosis, and I had normal bilirubin levels the whole time during that.
Urso worked for awhile for me, but then lost effectiveness after about 6 months. Cholestryamine has worked we for me for the most part, but as my bilirubin climbed higher pre stent(I’m talking near 14) it didn’t work as well.
I have an rx for rimp, but never took it due to potential complications
Hi, my sympathy for anyone itching.living in uk diagnosed ages ago with PSC shown pics of liver 1 lobe minus ducts .But not bothered getting on with things.
On no meds at all every few months get bad itching always same areas front of thighs and inside of firearms.
Found some relief with Neem oil. Also sometimes use an anti histamine type after bite ointment to calm the skin.
Inevitably scratching breaks the skin similar to taking the top off a gnatbite lol.
Under a v strong glass looking at the spot it’s just like a minute crater.
Clearly bile salts in bloodstream burning skin cells and they take a long time to fully heal sometimes leaving tiny scars .
Why it happens I don’t know .
Even after bloods all levels are ok . Doc’s have no answers . The scratching annoys my wife but heyho for better or worse 
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I have heard of some mixing neem oil with cayenne pepper and feeling better after showering off . Not resorted to that yet .
Good luck be happy 
HI there! So do you have personal experience with vancomycin? My daughter’s hepaologist is willing to prescribe it for her. SHe is stage 1 and 18 yo so may be a good way to go?
Yes my daughter does. Have I sent you information on oral vanco? Dose and brand are critical as is starting early stage. if you want information then email me: Cynthia.buness@gmail.com
I have recurrent PSC (after a transplant in 2012) which is essentially very early stage PSC. On Vancomycin, itching completely cleared within a couple of weeks. And - not a minor incidental - all LFT’s normalized. The published evidence, and the accounts on this forum, indicate high possibility that the itch clears because this is actually a PSC treatment (yet to be formalized) that works for most (but unfortunatley not all). If you have a Doctor that is willing to try it, go for it - better a treatment for the disease than just the symptom anyday.