I’m just going to stop taking a probiotic with the exception of when I am put on a broad spectrum antibiotic for another reason.
Where are you in thinking about this, Mark?
Susan,
Unless you are prescribed an antibiotic besides Vanco I agree with you that we should just not take it, especially if Vanco kills it anyway. That’s the decision I came to. Of course, if your physician has other instructions go with their guidance. One question. Have you found that being on Vanco for a long period of time gives you stomach issues such as diarrhea? Thanks again.
Mark
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No, Mark, quite the opposite! At my last colonoscopy a bit over a year ago Vancomycin had healed more than half of my colon. The previous year about a third of my colon mucosa had returned to normal. A miracle in and of itself as my colon had been totally inflamed for years before beginning Vanco. Although I’ve not had a colonoscopy yet this year, my symptoms tell me my colon is pretty much likely still only half healed.
At some point one of my doctors did tell me that Vanco sometimes works to heal one or the other, the liver or the colon (for people with UC), but not always both. I’m not sure how true that is and took it with a grain of salt.
I forget if you also have UC but either way I wouldn’t worry about ending up with digestive issues from Vancomycin. I’ve never heard of this happening.
Good luck and keep us updated as the weeks pass.
It’s hard to tell what effect probiotics have and it’s hard to tell which potentially could harm you. Therefor, I don’t take any probiotics.
Some people get diarrhea in the beginning of vanco treatment, since it can take a bit for your body to get used to your new gut bacteria setup (the vanco kills certain bacteria and thereby promotes other types). If you get these symptoms, they should disappear within the first weeks.
Thanks for the feedback everyone. Hopefully, these stomach issues will settle down soon. Thank goodness for Imodium to keep things in check. And for clarity someone asked about UC, no I’ve never been diagnosed with UC thankfully. I know many have but that’s one thing so far that I don’t have to deal with.
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Hi SusanG-
The last time I looked into things, the doctors involved in the clinical trials at Stanford recommend VSL#3 along with oral vancomycin for all of their PSC patients. I know it’s up to you if you want to try a certain type of probiotic or just skip it altogether, but I’m siding with those researchers and giving it to my son. Since it’s expensive, we try to stretch it out by adding it to the mix when making yogurt. And my son eats the yogurt at night, an hour or so after taking his last dose of vanco, so the bacteria isn’t killed off immediately. Lisa
My son has just started on oral Vanco (UC-PSC diagnosis). How can I find the ANI brand capsules? Should we explicitly ask the pharmacy for it? Also did anyone experience diarrhea after beginning oral Vanco ? How long before it went away. Thanks for all the help, this group’s posts have been most helpful
Call around as some pharmacies carry Ani and others can special order. Special ordering can be extra work for the pharmacist (that they would rather not do), so it helps to make the case as to why you need a particular brand. In this case there is speculation that the gel caps of non-Ani pills dissolve more slowly in certain patients, reducing their efficacy.
Like with other antibiotics, there can be some GI issues initially while the microbiome gets shifted around. This usually resolves within a couple weeks. Taking with food can help if experiencing nausea.
So far I’m getting good results with just the generic capsules. I am pulling off the blue end of the capsule each time before swallowing it. As far as diarrhea is concerned, that’s an unfortunate side effect of not just the Vanco but PSC in general. I keep a big bottle of the generic Imodium caplets on hand. Usually one or two will settle things down. He will probably see periods of time when he doesn’t experience it and then again depending on how his PSC is doing it may be back again. Good luck.
Mark
PSC 2011, rPSC 2021 / Liver Transplant 2015
Thank you!
This is good advice about the capsule! Thanks so much
Hi there- My son has PSC & Chron’s. He has been on different brands & types of Vanco- depending on which brand our Kaiser insurance decides to purchase for financial reasons & availability. The ANI capsules worked perfectly. The Lupin brand capsules did not seem to work as well (based on lab results for GGT), and, after we learned about the deal with the capsules not dissolving early enough, we started pulling the capsules apart & squishing up the Vanco into powder (still feels like you’re swallowing glass). Then we switched to liquid ANI brand and it works, but it causes dark orange stains on the teeth that need to be removed at the dentist with a Cavitron. Dang it. The liquid comes mixed with an artificial sweetener, which the pharmacy will not leave out, unfortunately, due to some weird regulation. So ANI brand Vanco in pill form seems like the way to go… but it also seems like pure luck if you can find it and get it covered by your insurance.
a lot of hassels on this stuff for sure. Just an idea, if your ending up switching around brands anyway, maybe check if Intraventous powder form is covered by your insurance (it usually is). Its the same stuff, the box insert or your dr will confirm that. We, and when I say ‘we’ I mean the prevailing thinking of PSC contributors on this forum, that IV for some reason may not have the brand variation issue that pills do (and that could be only because the capsule componenent of the efficacy problem is removed - so there could still be still be brand difference only showing up less frequent if you know what I mean). I take IV powder and I measure out doses into little rice papers (edible paper). by measure I mean guesstimate (I split a 500mg bottle into two approximately equal piles). and then roll it up and swallow with water. alternatively If you stick with liquid ANI, maybe a straw to avoid the teeth stains.?
Aw… I like your idea, rjm! Unfortunately for us, we were denied when we asked about IV Vanco. I am more than happy to get a little scale & figure out the dosing on my kitchen counter… but it appears that Kaiser is not willing to “bend the rules” for us. I’m my opinion, this is more like “coloring out of the lines” rather than “coloring off the page.” (I’m a dentist & we use terms like this when we have to use our brains in challenging situations.) Hopefully in the near future, as more evidence & understanding is learned and acknowledged, it will be easier for all of us! Until then, we will keep coming up with creative solutions. 
Thanks again. He got the ANI capsules and they are working for now! I appreciate the info
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Thanks so much! He got the ANI capsules and they seem to be working for now.