It sounds like you are on the right track. The Stanford protocol starts adult patients at 1500mg/day and adjusts up or down accordingly. I’m not sure what brands are available in NZ. Can you check this through the New Zealand Formulary? What we’ve seen anecdotally is that oral (pill form) vancomycin from Ani (called Vancocin), Cutis Pharma Firvanq liquid kits, and IV generics all tend to work well, while the non-Vancocin oral generics sometimes have efficacy issues. The pills are more convenient to take vs. a liquid which is why a lot of us try to track down Ani in the US. Ani sells two vancomycin products, name brand Vancocin and an “authorized generic” that is Vancocin in a different box and is considered a generic for insurance purposes. The first question is if Ani (or Firvanq) are available in NZ. Ani may potentially be distributing Vancocin and/or its generic equivalent through another company.
I don’t take probiotics but I know there are many treated patients that do. We don’t have any research in this area.
I just wanted to add that ANI only has the licence to sell Vancocin in USA. In other countries, other companies have the licence, but the drug is the same. For example, in Europe more than ten companies have the licence to sell Vancocin.
When you say injection, do you mean IV? We are in Oz and my son has just had a 2 month trial of Vanco. He was prescribed tablets but the supplier was short of stock, so we ended up with a mix of tabs and IV solution. We were given a bunch of syringes and sterile water. Had to inject water into the IV powder bottle, mix and then syringe it out in the right dose for him to take orally.
It is pretty fiddly, but worth it. He had an awesome response (bloods normal for the first time in 2 1/2 years). Unfortunately, the Infectious Disease Committee for our state does not want to approve further meds due to the risk of developing Vanco resistant superbugs (from a public health perspective). This is why Vanco isn’t generally prescribed in Aus and NZ. Good luck with finding someone to prescribe it. Can you please let me know if you do.
Very helpful, thanks. Dr verbally approved Vanco so will let you know how it progresses. Also doing lots of baselines - fibroscan, bloods, MRCP (there’s a 6 month waiting list for MRI here!). Withdrawing from urso 2 weeks ago has given me a good case for vanco. Westcoaster - interesting to hear about the IV solution. Think that’s all they have in NZ.
Hi Westcoaster, I’ve just started vanco @1000 mg a day (Doctor wasn’t keen on the higher dose). My pharmacy did the hard work turning the IV solution into oral vanco - it took them 2 hours yesterday to prepare enough for 2 weeks. Vanco is a seriously strong drug - I felt nauseous and dizzy today for a good hour after taking it and feel completely wiped out. Although, I did over-exert myself with 2 hours biking and an hour of walking. My liver enzymes keep creeping up since withdrawing from urso:
4 June results
ALT 290 (normal 5-30)
AST 131 (normal 10-30)
ALP 291 (normal 20-90)
GGT 615 (normal 10-35)
Fibroscan 8.9. MRI scheduled for next Friday. I’ll send an update after a month.
Every doctor is different, our doc asked us not to discontinue urso when starting vanco and advised to continue using both of them until the body has enough time to respond to vanco. This could be a month or two depending on how the test results respond with vanco.
Thank you for your replies! This is such a fantastic support group :-).
In NZ the government only has IV vancomycin Mylan brand, I don’t think we have any tablets but I’ll check in with the pharmacy as the treatment progresses.
Thanks for the reminder that I might need to increase the dose. So far the 1000mg has been unpleasant but that might be a combination of other things, such as stopping urso and having significantly raised enzymes. My vision is blurry, I can’t concentrate and have felt quite nauseous - but I don’t feel out of breath or unfit. It’s only my second day so hopefully the body will adjust over the coming month.
I’m aware that urso doesn’t stop progression of the disease and now have evidence as my LFTs continue to climb without it. The only positive to urso is that I felt completely fit and healthy and would go on it again as a last resort for quality of life.
How did you know vanco was working if you stayed on urso? Urso normalises my blood tests very quickly so it would be difficult to see the impact of vanco.
IV formula is fine and less expensive; in fact better than an off brand tablet that may have pH issues. Try to use a straw to drink and just have good dental hygiene. I have heard that it can discolor the teeth because it changes the microflora in the mouth. A dental hygienist can restore the color to your teeth with cleaning.
Hi, Sorry to bother you. My IV vanco solution is supposed to be kept in the fridge. Do you have any suggestions as to how to transport it and keep it cool? I’m on 10ml x 4 per day and would like to make it as mobile as possible. Many thanks. Emma
Compounded vanco maintains ~90% of its initial concentration after 26 days at room temperature and ~94% of its initial concentration after 75 days in the fridge (see https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2999368/). While it is a good idea to keep your main supply in the fridge, you probably don’t need to stress about keeping your day’s dose cool.
Back when I was doing this I kept one bottle at home and another at work, both in the fridge. When away from both locations I would carry individual doses in capped medicine droppers or capped oral syringes in plastic bags. I had to be careful about where I put them so they didn’t pressed/plungered.
Get in the habit of shaking the main bottle prior to drawing from it to make sure that the vanco is properly suspended. This includes when dividing the main bottle into two.
Just like JTB wrote, for your every day use, you don’t have to worry about storing vanco in the fridge. Just don’t store it in direct sunlight.
I use 10 ml plastic test tubes. You can buy hundreds of these for a couple of dollars and it’s convenient since you throw them away after you take the dose. On vacations, simply buy a small cooler and freeze pack (you can take this onto airplanes in your hand luggage).
A quick update from me. The vancomycin didn’t have a positive effect on my blood work after a month @1000 mg per day and I felt terrible on it - blurry vision, brain fog and fatigue.
2 July results
ALT 207 (normal 5-30)
AST 154 (normal 10-30)
ALP 326 (normal 20-90)
GGT 381 (normal 10-35)
I decided to stop vancomycin and go back on urso rather than increasing the dose as I still don’t have a firm diagnosis. Hopefully urso will normalise my blood work again and we have already seen an improvement after 4 days.
A bit of background:
I have been under investigation since January 2017 in Kenya, 3 months in the UK and more recently in New Zealand, where I’m originally from. In July 2018 it was suspected I had PSC as I had scarring of the bile ducts and a temporary stent was inserted. I also have Chron’s. So perhaps this experiment means I don’t have PSC but lets see. I will update you when I get more information.
Just wanted to add, regarding the discussion about how to take the IV Vanco, I’ve gotten into the habit - pretty easy one - of pouring the powder dose onto a cigarette rolling paper (the rice paper kind), usually it takes two papers joined together for the high dose months, and twisting into a little ball and swallow like a pill with water. The straw does sound about as easy, but the rice paper guarantees no teeth stain, and other conveniences. I’m not a smoker at all, but such papers are easy to get if you run out.