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.
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,
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!
If it helps, here is the lot info for our medication. No change in symptoms other than increasing LFT.
EXP: Mar 2021
Thanks. PM me if you want more details.
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.
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.
Hoping for you as well. I cannot imagine what it must feel like to have a young child with this disease. So hard.
We are sorry to hear of your son’s diagnosis but you have come to the right place. We trust this forum will be of great help and encouragement to you and your family as you go through PSC together. I know the initial diagnosis is quite a shock, and all sorts of things will go through your heart, but I want you to know that there is hope and the advancements in medical science have come a long way in dealing with this rare disease. Right now, I encourage you to educate yourselves about PSC, know the warning signs when intervention is needed and have a good medical team in place that you can go to. You need to find a hepatologist associated with a transplant center. He/she will be a doctor that will know what your son needs and when. A general GI doctor is not necessarily experienced or trained to be able to handle PSC. Stay with the specialists if you have that option there in Australia.
And while your son has been diagnosed with PSC, let him be a normal 7-year-old boy. Let him do all the things he would be doing had he not been diagnosed with PSC. His body will let him know when he needs to slow down and rest, or if he’s not feeling well. But the last thing he needs is for you to be reminding him constantly that he has PSC.
We are here for you to answer any questions you may have and try to be of help and encouragement along the way. No question is too simple, we are a caring community
so please don’t hesitate to reach out to us. We wish you the very best.
PSC 2011 / Liver Transplant 2015
Your son’s symptoms sound very similar to my son when he started having health problems. I can certainly relate to the pain from this diagnosis but rest assured your son will get better as he responds to the treatment. Note that the initial info we find online about PSC is quite old and can be quite scary. Each person will respond differently from others. Echoing Mark’s sentiments, the best thing you can do for your family is get yourself familiar with various aspects of PSC. There is a lot of good information here and very helpful folks eager to help and so please don’t hesitate if you have any questions & concerns.
Our’s has been a difficult transition because we were misdiagnosed last year with wilsons disease + AIH. We used ursodiol + prednisone + azathioprine for few months after PSC diagnosis this year and later switched to oral vancomycin. My son is doing well now compared to last year and even from few months ago. Kids are very resilient and adjust quickly. LFT normalization is what we are looking for but its been elusive for us and hoping liquid vanco will do the trick and keeping fingers crossed.
After PSC diagnosis, we researched a lot and talking to few parents, decided to switch to vancomycin as we believe that’s the best approach given the limited options we have currently. Check with your doctors if they are open to using vanco during the next review and also ask doctors to check vitamin D/K if they aren’t already.
I have a teenage boy with PSC who was diagnosed nearly 3 years ago. I can still remember the feelings that you’re describing. I still have occasional moments of panic like that, but our lives are mostly good.
While these boards are great, I did feel very overwhelmed by some posters (not you sr13!) whose comments were that you must get on vancomycin. This is not available for PSC in all countries or by all doctors and added to my feelings of helplessness.
More than anything else, treat your boy the same as you did before he became sick/had a diagnosis. Keep going to school, playing sport, hanging out with friends.
We are also in Australia, if you want to chat more.
Big Hugs to the Mamas out there; you’ll be in my prayers this week!!
I have nothing to add to the conversation at the moment, Mark gave great advice.
Gaz in WA here.
I dont know what help I will be since I am a crusty old 50yr old male and I think this disease in the young is slightly different but here if you want to ask questions.
I do know however there is some fantastic posts that parents in your position have written in the past. You may need to go back through all the thread of the older posts.
Which brand have you switched to, sr13? And have you now noticed a difference?