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.
Vancomycin doesn't work for everybody, and doesn't work for most patients who have IBD without PSC.
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.
Please consider signing the petition. If you care, you're a patient advocate.
What do you think it might take to satisfy the criteria of the AASLD guidance by forming a new study that is more patient-friendly than the Mayo study mentioned in the article?
I wonder what it would take for patients affected by this to organize such a study themselves. I imagine that paying for it would be a big hurdle.
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).
