My son’s current Vanco capsules are very hard, as in they feel hard & have a glassy sound when tapped, and the vancomycin inside is in the form of a hard clump. It’s difficult to remove the capsule covering the half that contains the medicine. On the other hand, his previous brand of oral Vanco also came in a capsule form, but they contained the powder form of the medicine inside, and the capsules were softer, as you could squish them from the outside. Both are oral capsules. We will be switching to the liquid form shortly. Make sense?
That was a typo. I know what oral means… just meant to write liquid.
I am not aware of capsules that have a powder inside unless they were constituted by a specialty pharmacy.
Cheers Cactusgirl !
You are - on this forum as well - what I described above as ‘a very helpful poster’ 
.Thanks for the work you do in this area and bringing it to these media. And a nod to others as well. Shared knowledge is our power 
. And now I have some more reading to do…
Let me know if you want additional papers. I actually put that Roundtable together and filmed it.
Cynthia
NO KIDDING! as a ‘wake up and smell the coffee’ piece of evidence - for good and well meaning institutional physicians who are torn between oath of ‘do no harm’ and a feeble and hasty policy of having to sell ‘not enough evidence’ - that particular video is enormously powerful in my opinion. As I mentioned above in this thread, its compelling and undeniable when a handful of the biggest players in the published realm on Vanco/PSC (I suspect you were off camera, and I also recognised Dr. Tabibian) from irrefutable research institutions, sit in a room and you can evesdrop on a candid unscripted off-the-cuff discussion … witnessing the stark sincerity of the very human discussion of there independant clinical experiences, I think really helps to break down the last of the lame-ass excuses I’ve heard for refuting the existing literature . My plan was to send this to my Tx nurse, who will pass it on to the Hepatologists and I will insist they watch it, and I will check back to see (note, I bring them the latest in Vanco research hardcopy papers with every appointment - like a tradition of bring them the newpaper). These Docs have traditionally have had a line to tow but struggle to medically explain my remission (they do not support Vanco for PSC) - not their fault and I know its troubling them. (I’ll point out to them there’s a Canadian at the table that they might recognize and put in a call to). Its fun fighting the good fight, I smile through my appointments, them not so much 
.
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Have we emailed before?
no, we haven’t communicated other than another thread on this site I recall.
…and to complicate things more:). It seems that Vanco has an immunomodulatory effect as well. People with PSC+IBD might need a much higher level of Treg (approx. 2x higher) not to experience the PSC+IBD symptoms.
Below, (from the AASLD meeting posted earlier),
,
at 9 months off Vanco, when the symptoms came back, Treg/Teff was at the same level as the Healthy control group, whereas on 1 year on Vanco (no symptoms) this level was twice than the Healthy control group. Also to be noted: the immune markers of the pediatric participants were positive (p-ANCA etc) and they become negative after OV treatment.
A question might arise though: would all the PSC patients (with or without IBD; pediatric or adults) present themselves with positive immune markers? If not, how would the Treg graphs on Vanco look like in this case?
This immunomodulatory component of Vanco is new turf for me. I can say that, looking back at tests from when I was first diagnosed with rPSC, that I got an MPO (pANCA) and PR3 ANCA tested to see if I could qualify for a Vanco study (requirement, if I recall correctly, was to have IBD as well as PSC, and if only PSC at least a positive pANCA). Digging up the test now, my pANCA was normal for both (which I interpret as ‘negative’).
Hi - I’m just following up on my latest post and looking for a little input here about ideas that might help…
My 16 yr old son has Chron’s and PSC. After he was diagnosed with PSC about 1 yr ago, his liver enzymes (ALT, AST, AlkPhos, and GGT) normalized within weeks after starting oral Vanomycin 500 mg tid, and then over time they slowly started to increase again. Both the dose and frequency of Remicade infusions were increased AND his Vancomycin pills were switched concurrently, and I originally suspected the culprit to be the change in type of vancomycin capsule. So we switched from the pill form to the liquid form of Vanco (ANI brand); however his liver enzymes continue to remain elevated. Now I am suspicious that the higher dose & frequency of Remicade could be the issue. I have read about the possibility of other drugs potentially reducing the efficacy of the Vancomycin as well as about situations where Remicade has caused liver toxicity.
I would much like to take him off of Remicade infusions altogether and see what happens, as I am not convinced that Remicade is helping him at this time. His GI doctor, on the other hand, is convinced that it’s the Remicade that is controlling his IBD and is hesitant to stop it for fear that he could have a flare. From my understanding, those with PSC and IBD who are also taking Vancomycin usually end up not needing to be on any medication/biologic for their IBD, as it appears that Vanco also helps control the IBD.
My son’s latest stool sample (calprotectin = 7 mcg / gm) shows there is very little inflammation in his intestines, he has no symptoms, and he has been on a strict SCD diet for a little over two years now.
- Of note, the dose and frequency of Remicade have been increased several times over the past 6 months, since the levels of Remicade were found to be low or undetected each time labs were drawn, which I was told was a common occurrence for a teenager going through puberty. And Remicade needs to be maintained at a certain level in order to reduce the risk of forming antibodies, which were being detected in his blood.
- I am still trying to get the details on the doses of Remicade that have been administered so far, as this information is not posted on my son’s electronic health record, and the information I have received from my sons’s GI nurse is not accurate. (She sent me a list of the dates of his infusions and said the dose was the same each time, which I know is not accurate.) However, I am certain they are quite high, since we were told this was the highest possible dose before considering switching to another type or combination of medications.
I’m curious if anyone else out there feels the same way I do about stopping Remicade, or if anyone has been in a similar situation and figured out a way to make things work out for the best.
Thank you for any input!
Lisa
As I have a hard time swallowing pills and I eat a very clean diet free of dyes and additives etcetera, I separate the two parts of the ANI gelcap, remove entirely the who-knows-what dye on the smaller bright blue piece, and toss, and chew the rest, dissolving it in my mouth before swallowing, often also spitting out the dyed bottom part of the gelcap after chewing it all for a time.
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In my experience, if one sucks a bit on the hard lump, it dissolves.
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WOW!!!
This thread and others on Vancomycin do make me wonder if I should be taking probiotics.
Does anyone have any thoughts or experience with this?
I found out the hard way a year ago when I was prescribed a simple antibiotic by my dentist, that it can kill the good bacteria in my gut. My PCP advised me to take a probiotic during the time I’m on antibiotics and two weeks after I complete the course. Not all probiotics are equal. He recommended one from Walgreens called Super Probiotics. It contains some 20 billion active cultures. There are other brands out there online, but this link will give you an idea.
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One issue with taking probiotics while concurrently taking a broad spectrum antibiotic like vanco is that the antibiotic will likely kill a lot of the bacteria in the probiotic. Off the top of my head VSL#3/Visbiome has 10 strains and only 2 of them are likely to survive typical oral vanco gut concentrations.
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Thank you, so much, Mark and jtb!!
Since backwashed bacteria from the gut into the biliary tree is one of the ongoing theories of the causation of PSC, I was wondering if it is within within the realm of possibility that a probiotic containing many strains of bacteria could contain these damaging bacteria (the probiotic I am currently taking has 34 different strains - Wholesome Wellness Raw Probiotic, 100 billion CFU, if anyone is curious about the brand and potency).
Does anyone here know the names of the specific gut bacteria implicated in our disease?
jtb,
This is fascinating. I know I have a malformation and constant inflammation in my duodenum, found on every colonoscopy. Hmmm. Is this keeping my disease from progressing, keeping it from totally healing after four years on Vancomycin, or irrelevant?
Hi Mark! The whole idea behind the vanco treatment is to kill the gut bacteria. It might very well be the “good” bacteria that drives the disease progression (since we don’t know which bacteria are bad and good).
In the case of this specific supplement, both lactobacillus and bifidobacterium bacteria are killed by vanco. In other words, it’s pointless to take this supplement.
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So is there any probiotic that would work with Vanco? Or should I just not take it any longer. Don’t wont to be counterproductive.
Mark