Hey there, I’m new to this community and have found so much helpful information from you all so far! I’ve had PSC for about 7 years, was diagnosed with UC 13 years ago, had a total colectomy w Jpouch in 2017 and recently have been diagnosed with Crohn’s after a solid year of consistent flare ups.
My LFTs have always been high and the only symptom I’ve experienced from the PSC is occasional bouts of really intense pruritis that last anywhere from a few days to a few weeks. I’ve tried cholestyramine, hydroxyzine, Zoloft, naltrexone (which gave me the worst pseudo-opioid withdrawal- it felt like I was dying.) and none of them have offered me any real relief. I’ve told my doctor about the success patients are having with Vancomycin and he keeps dismissing me. My mom is a critical care nurse who worked in Endo alongside my old doctors at hopkins for awhile when I was in college and she’s also pushing for Vanc after reading about the potential benefits, especially for itching.
My doctor just responded to my last message asking him to prescribe Vancomycin by saying he wants me to try Rifampin. Has anyone had any success with this antibiotic in regards to treating itching?? I’m so frustrated with my doctor and I don’t want to waste anymore time. I’m losing so much sleep and it’s affecting every aspect of my life. At 26 years old I just want to get my life back.
I’m sorry you are having such a tough time getting your doctor to prescribe Vanco. I will say, for me, that I was on Rifampin for 4 years with PSC. I took 300 mg twice a day. It was the only thing that brought relief from the intense itching, up to 98% relief. It may or may not work for you but it is worth the try. Give it 2 or 3 weeks though, it’s not an instant relief. Take care. We are here for you.
PSC 2011 / Transplant 2015
Thank you for your response, Mark. I’m willing to try anything at this point as I’ve gone from occasional “itchy fits” as I call them, to experiencing them almost weekly.
Well, I hope it is helpful. I personally would stay away from stuff like Zoloft. It really messed with my thinking. I hate anything like an anti-depressant. I know that comment may be controversial to some, but this is me personally speaking. We need as clear a mind as possible dealing with this dreadful disease, not something more to add to our thinking. Take care, and remember “Live Life to It’s Fullest!”
When my son began taking Ursodial the itching stopped within a few weeks. I’m not sure if that is an option for you but there were no side effects either.
When my itching was at its worst, my dermotologist prescribed Mometasone, which is a steroid-based cream. It is a bit unusual to apply/use, but after two days, it took my itching down 75%.
That made life much more livable.