Keith Lindor of Mayo is looking at studying vancomycin. He is one of several hepatologists from a variety of institutions looking at starting a study with vanco vs. urso in pediatric patients. They are in the process of trying to obtain the funding right now. Part of the problem is finding the end point. What would that be in PSC? MRCP scores? ALP or GGT? Elastogram scores?
DJamato
My doctor is Dr. Davies in Sacramento, CA who works directly with Dr. Cox.
Dr. Davies does not cut back on Vanco, Dr. Cox does. I have been working with her in order to cut back my dose. This is due to my fear of Vancomycin resistance.
Question for people who are on Vanco.
What brand of Vancomycin do you or someone you know take? I know the common brand prescriped is Akron, Prasco (now discontinued) and ANI.
Thanks Nick for the information. If you do cut your dose please let us know how your body reacts. My daughter has been on Akron Vanco for about 4 months to good results. Our doctor is looking at cutting back the dose starting next month, I will keep the board posted.
I was on Akron for a year, Prasco for a year and now due to supply and demand I will be starting ANI
I've taken oral Alvogen, oral Prasco, and compounded IV Kabi. I had mixed success with Alvogen and full normalization with both the Prasco and Kabi. From asking around, some people have had success with Alvogen and Akorn while others have not. I plan on pivoting to Ani when the supply of Prasco dries up.
It is interesting that Vanco brand is so important. I know Stanford trial considered this. I wonder is it possible to request Prasco to be continued (if it is the best brand so far)
From my experience and from what I can understand Prasco is a generic, that is a re-brand of the name brand. So same ingredients. Akron is not, they have changed the compound for what is instead in the generic in order to sell it at a cheaper price.
Prasco is being discontinued so I wont be able to get it. Rumor on the street was ANI was making a re-branded generic. There for getting the brand medicine, that has a different brand name at generic cost.
This is all my own insight on this though.
I had not heard that about the Akorn brand. From my shopping experiences, the cash price for a 90 pills of 250 MG Akorn vanco at both Walmart and Walgreens in the Chicago area is about $5000. If that is a cheaper compound that really is disappointing. What would the real thing cost? No real question just venting.
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Apparently manufacturing Vanco is tricky and the FDA recognized this. It wasn't patent protection keeping oral generics off the market, it was the FDA requirement that a generic manufacturer of Vancomycin conduct a clinical trial on humans showing equivalence before it would be approved. This was a hurdle nobody bothered to jump. Eventually there was enough pushback that the FDA relaxed this requirement opening the door for oral generics. Unfortunately, it seems that we are seeing the same therapeutic equivalence issue on the oral side as was previously seen with the IV generics.
Per Viropharma (the originator), Prasco was the official generic and it was in fact rebranded Viropharma Vancocin (same exact pills from the same place). Viropharma was absorbed by Shire and Shire recently sold Vancocin to Ani. Ani now owns Vancocin, manufacturing process and all, and has decided to distribute as the official generic. Going forward there will be no more Viropharma or Prasco Vancocin, but Ani Vancocin should in theory be the same exact stuff.
If cost is an issue, compounding IV Vanco is a lot cheaper. A month of 1500mg/day is roughly $400-800 USD.
It seems like in the Chicago area the major pharmacies are all contracted to carry the Akorn brand. Any ideas on how to get the Ani brand?
If your daughter's blood work is normal and if she doesn't have any symptoms I personally wouldn't worry about switching. Major pharmacies can often special order a particular brand but you have to find a pharmacist who will put in the effort to make it happen. Sometimes they can't get hold of what you are looking for so you may need to shop around.
For now insurance is covering most of the expense, so out of pocket is around $500 a month similar to the compound cost, so for now we are using the pills, it makes my wife more comfortable.
Thanks for the info JTB. For now her blood work is solid, so yes we are going to keep going with the Akorn brand for as long as we can get our hands on it and it stays "affordable." But I just worry about what if one day the brand doesn't work. It may be an irrational fear, but since it's my 5 year old baby girl my anxiety level is really high. If it was me taking the pills I probably would not even be thinking about the brand. When this first all happened we felt helpless, but now we have done so much research and talked to so many other psc families and patients (I learned a ton from you, thanks again) that we feel like we are good advocates for our child and it has taken some of the edge off the anxiety.
Hi - My 17 yo daughter (PSC, Uveitis, Celiac, IBD) is on Vanco for the past 4 years. So far successful. However we were never able to cut dosage below 1000 per day and actually we always seem to end up at 1500 when liver functions go up.
Hi Grose…my 14 yr old son was diagnosed in March of 2016 with UC and PSC…went on Oral Vancomycin around May of 2016. Initially MRCP should beading and early PSC. Now gi dr called and said there’s possible narrowing of karge bile duct. He will be forwarding report to Liver specialist. Am glad your daughter is doing well…has she ever experienced this?
Glad to see people are having success with Vanco. I wanted to give an update to my 5 year old daughter’s condition. She has been on Vanco for about 10.5 months now. Her liver numbers are doing well and she has great energy. The other interesting update is she is now growing normally. She was always in the 10-15 percentile for height (even though my wife is very tall and I am average) but over the last 8 months she has grown multiple inches and is now in the 43 percentile for height. From my reading it seems that children with psc tend to have growth issues. My sample size is only one person and of course anecdotal but since she is on vanco we have seen a definite spurt in her growth. All I can say to those with children, is try the vanco, I know there is only small research studies available, but the alternative is so awful. Hopefully 5-10-15 years from now there will be a cure, but for now I think vanco has helped many reach a form of “remission.” God bless all the families who are battling this disease, let’s keep each other informed with our stories, and hopefully one day this will all be but a bad dream that we have all overcome. DJA
Great to hear the progress. As with all rare diseases, sample sizes are always small. Ignore the anti-vanco fanatics and keep up with the latest news. Stanford U will have vanco updates coming early next year (trial results which have been delayed). Recently there has been other vanco related publications too (see other threads).
There are also other encouraging news (eg Norudca success in trial phase 2, which was reported recently, though not via “peer review” process, which by the way is pretty useless anyway - I say this as somebody who has chaired peer review process in hard science field).
Hi djamato,
Since I posted on this strand, I want to update my news about my 14 yr old son. After hepatologist campared my son’s mrcp pre-vanco and mrcp post-vanco, he saw improvement in the narrowing of common bile duct. Meaning there’s less narrowing.
I feel the same as you. My son taking oral vanco gave him back his energy and he’s doing well. (He’s at sleep away camp at the moment).
One thing I want to share is that he’s taking oral vanco from ANI that we were able to find it at Costco in Rockland County, NY. They do not automatically refill the Rx and we have to call monthly for them to reorder it.
Glad to hear that your daughter is doing well, and like you am keeping hope that 5-10 yrs from now there will be advances made to remedy this horrific disease.
Julie