Thoughts on Utah “study” indicating that Vanco was not effective for children with PSC (link below)? My physician warned us about the study and said he does not believe it is representative, particularly as it does not examine children with PSC/UC, where he has seen Vanco show great results.
I don’t have the full article but pretty shocking to me that no treatment gets better results than Vanco treatment, as suggested (in that the study concludes that the 5-year transplant rates were 50% less with no treatment). It would seem children who received no treatment would not have received treatment because they had no symptoms and/or a mild case? Thus, the fact that a subset of children who received no treatment had better outcomes would not, by itself prove anything unless all the children had nearly the same condition. Indeed, the article states: “Spontaneous normalization of biochemistry is common in children receiving no therapy, particularly in the majority of children with a mild phenotype and an early stage of disease.” So it is not at all clear that the children’s records being examined were apple to apple comparisons.
Here is what I know from our experience: In March/April, my son had no energy, could not play without sitting down, was suffering tremendously, etc. After diagnosed with PSC/UC and 6 weeks on Vanco, he is nearly normal on liver enzymes, has tons of energy (swims up to 3 hours a day (in summer), plays soccer harder than everyone on his team, doing great in (in person) school, etc. Would his condition have normalized without the medication? Seems suspect to me and our liver specialist agrees that Vanco appears to be working for him very well (although we are aware that there are no guarantees in the future).
Your doctor is on target. I have read of waaaay too many positive stories with the use of Vanco. If you are on FB, join their PSC groups - loads of great information. Not a guarantee of anything, but certainly it seems to work well for many. I was on it, 1,000 mg a day, for 12 days for a severely infected cat bite. Just happen to get my LFT’s tested a good week after I was off medication. My numbers normalized for the first time in almost 3 years.
My values are normal for AST, ALT and mildly elevated for ALP. So, until my ALP gets higher, I will not fight to get on vanco - as my insurance won’t pay for it. 12 days cost me $800 with insurance, $600 out of pocket.
My concern is building up resistance to the drug OR becoming allergic to it. I was never allergic to amoxicillin, but sure am now. Same for sulpha based antibiotics. The good news, my ND PC is on board and my hepatologist found it “interesting” that we saw results after such a short window.
My thinking, since PSC is all about Gut Health, somehow I too responded favorably. Makes me think further on how to improve my gut health in the interim.
I’ve seen this study too and it appears they didn’t take into consideration vancomycin brand (only 2 brands have proven to be effective) or dose (some patients were taking doses other than the 500mg 3x per day, which seems to be most effective). I’ve been on vanco since 2018 and it saved my life, so it’s scary to me that this study is out there claiming that vanco has no effect when I’m living proof, and it sounds like your son is too. I hope one day vanco is the standard PSC treatment!
Thanks Jen. Glad you are doing well. My son is on 1,000 mg per day. He is small, and our physician did not want to above that amount. Hopeful that this continues to work.
That makes sense! I hope so too. It’s so amazing to hear stories like this where energy and liver numbers are returned to normal!
We have submitted an official comment to the journal that published this paper. I am aware that several docs are doing the same. You should encourage your doc to do so as well. I am happy to connect him/her with the docs who are preparing comments. The statistical methods Deneau et al. used are inappropriate and should not be used to make treatment recommendations. Those experienced with oral vancomycin therapy understand that there are multiple variables that must be managed for successful and sustained efficacy. Deneau et al. did not consider them in this retrospective data analysis. Vanco has resulted in a sustained clinical and therapeutic response for multiple years in many PSC patients and especially children both nationally and internationally. Many have been able to avoid colectomies, transplants, and lives filled suffering. Instead, they have lived normal lives.
The Deneau dismissal of vanco therapy is tragic for all PSC patients.We believe that they should instead try to understand and define factors that have resulted in its success. There are no other treatments.
You are absolutely correct. And there are other variables not considered as well. Please let me know if your doc wants to submit a comment to the journal. This is so important.
Are you taking liquid? Is that why you cannot get 30 days?
No, I only needed to be on it for 12 days - it was for a severely infected cat bite, not PSC.
I’m actually working with a handful of docs on submitting a comment to the journal I’m going to take a guess here, but is this Cynthia? (It’s Jenna!)
This study angers and frightens me. Vanco has been a lifesaver for my daughter and it’s hard enough to get doctors to prescribe it, or insurances to cover it, and this misleading study risks the health, happiness and even lives of MANY PSC patients who benefit immensely from Vanco. What we need is the FDA to look at the dozens upon dozens of cases that benefit from this miraculous drug, and approve it for PSC patients, not make it even more challenging to get. I don’t understand the motivation of those people behind pursuing this horrible and even dangerous study and risking the lives of others by doing so.