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Primary Sclerosing Cholangitis (PSC) - Online Support Group

To everyone taking ANI Vancomycin

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?

Thanks so.

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.

What now???

Susan,

Thank you for sharing this. Yep, we are seeing this for my son last couple of months after noticing improvements earlier. We have switched to liquid vanco from ANI pills now and have to see if that makes any difference for him going forward. I have forwarded this info to Dr.Davies for her feedback.

So sorry to hear this!

Do you, or does anyone know when the formula was changed? Dr. Lindor was not sure.

I’ve no idea if the ANI Vancomycin I picked up two weeks ago (a month supply), is the old formula or the new one.

Best of care,

Susan

Hi SusanG! I have had recent communications with ANI and I am informed that ANI’s vancomycin product formulation has not changed although they changed packaging. My general advice to all patients is to always keep track of the lot number of the product they take and any change in symptoms. So glad you are doing well!!!

Dr. Lindor told me they changed formula. I’m confused: Wouldn’t HE know?

The lot number. I’ll look on the bottles. Thank you!

Hi,

If it helps, here is the lot info for our medication. No change in symptoms other than increasing LFT.

LOT: 504361
EXP: Mar 2021

Thanks. Call me is you want more details. 602-758-7525

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Can you give me more details on your elevated LFT? How long have you taken vanco? Have you been normal? When did the elevation occur? How elevated? Do you also have IBD that has been controlled by the vancomycin? Thanks. You can call me if you prefer.

Hi,

This is for my 6 year old son. So far we have been on vanco for around 4 months. After the first month we saw good improvements with AST/ALT/GGT/ALP around 71/81/198/541, the lowest ever we have seen in more than a year. But the next 2 months, these went up to 133/263/731/343 and 119/161/591/195 unfortunately. He has no symptoms of IBD but tested positive during colonoscopy biopsy but no visible damage noticed during scope.

Now, we have switched to liquid vanco compunded from ANI capsules and its been a week so far and keeping fingers crossed for the next month labs.

Did you switch from ANI because the formula changed or just that he stopped responding?

Hi SR13, so, just to confirm, you started on Ani, your son’s levels went down, but then they went up (your first set of higher numbers). But then the next month, although still elevated, they seemed to go down (your second set of numbers)? Am I understanding that right? I’m just trying to put clues together. Thanks!

@SusanG We changed because doctor didn’t see any improvements even after the third month labs. We didn’t know anything changed from ANI at that time or even now.

During this time, we saw other improvements in him though. After a year of no growth, he grew couple of inches but the weight remains around the same levels. He had abdomen distention earlier and that went away almost completely. His liver and spleen are soft to touch now, earlier with urso regimen we felt those are still enlarged and hard to touch.

@Joki Yes, your understanding is correct. Most of the literature and talking to folks, have seen improvements within few weeks/couple of months. As we haven’t seen improvements after 3-4 months of usage, doctor suspects that the medicine is not getting enough time in the gut for him as they have fast metabolism at that age and doctor thought switching to liquid vanco might help. It’s only been a week so far and we are hoping for some changes for next month labs.