Primary sclerosing cholangitis is a serious rare disease for which there is no recognized effective treatment. Oral vancomycin has shown substantial promise, but the American Association for the Study of Liver Disease is just about to issue guidance that it should be used only in clinical trials. Why this is happening is unclear.<p>My daughter was diagnosed at age 17 and suffered for 10 years from fatigue, persistent diarrhea, terrible itching, elevated liver enzymes, and abnormal MRI of her bile ducts. We heard from another parent about oral vancomycin, and convinced her doctor to try it. Within a few weeks, she had the first formed stools she had had in 10 years. Her itching resolved, and eventually her liver enzymes returned to normal, her colitis resolved completely, and even her MRCP returned to almost normal. I am personally aware of multiple other such stories. She has ben asymptomatic now for 6 years.<p>Vancomycin doesn't work for everybody, and doesn't work for most patients who have IBD without PSC.<p>But to restrict it to clinical trials, as the new AASLD guidance does, when there is no demonstrated harm, is misguided. Insurance companies are already starting to deny coverage. Physicians should be allowed to use their judgment, with consent of the patient.<p>Please consider signing the petition. If you care, you're a patient advocate.
My spouse also has PSC w/o IBD, 13 years now since diagnosis. We were given a poor prognosis 5 years ago but Vanco has stabilized her MELD score (indicator for transplant) and has been somewhat stable since. The Mayo Clinic in AZ has been very helpful after many hospitals rejected our desire to use experimental treatment.<p>NOTE: There are some generic equivalence issues having to do with the coating, make sure you research the manufacturer (ANI seems well tolerated, Alvogen not so much).
I’m thankful you posted this. As a male with ulcerative colitis, I have a continuous fear that I will get PSC some time in my life.
I wish all the best for your daughter and while I’m not a US citizen, I wish I could support your cause.