From my correspondence with Dr. Keith Lindor yesterday (Mayo Clinic in Arizona).
As most of us know he is one of the pivotal doctors studying Vancomycin and Primary Sclerosing Cholangitis.
(He is not my doctor as I live in Massachusetts but I reached out to him a year and a half ago to see if he might help advize me.)
I emailed him yesterday to tell him my liver enzymes are normal for the first time in almost thirty years, after 1.5 years on ANI Vancomycin.
His response as follows:
“Thanks Susan. This is great news!
We are now worried that ANI has changed supplier, so it will be important to monitor tests.
There have been concerns that [since] their supplier has changed… the drug maybe less bioavailable with the new supplier.”
This is terrible and incomprehensible. What do you all know about this. When was the formula changed? Dr. Lindor said recently but he wasn’t sure exactly when. Has anyone seen their liver enzymes go back up and/or once symptoms return or become exasperated?
ANI is why I’ve been spending many thousands of dollars this past year and a half. (After my pharmaceutical coverage about $6,000. a year). Many of us are aware that for many with our disease, it was the only Vancomycin formula that worked.