Hi Andrea,
Due to my other health issues. I am at high risk of catching things as I’m on meds that lower my immunity. And they are planning on using biological meds this year, which will make it worse. I still plan to ask my gastroenterologist anyway.
Bron, I messaged you some leads in Brisbane.
Also, the following case report appears to be from Australia and all of the doctors from Melbourne: http://casereports.bmj.com/content/2017/bcr-2017-221165.full
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Thank you Job, I’ll check it out
I can’t get into this article. Does anyone know what BRAND of Vancomycin was used in this study?
Hi Susan,
Hope you are keeping well.
No mention of the Vanco brand in the article. Please see pdf version attached.
Best wishes,
Daniela
Efficacy of vancomycin in reccurent PSCpdf.pdf (1.2 MB)
Bron.
Gary from Perth. (Although in Kununurra at present until August)
My hepatologist hasn’t yet mention Vanco tome, however it is on my list of questions for my next appointment so will keep you informed.
Hi guys!
I’m bumping this thread so that anyone interested in my story can find it. 
I’ve now been taking vanco for 2,5 years (I originally found out about it on this forum, through the help of you guys). Since I started, I’ve had constant normal bloodwork and no progression of the disease visible on MRCP. Worth mentioning for anyone reading this is that I have early stage intrahepatic PSC, so your mileage may vary.
I’ve still not found a doctor in my country (Sweden) that’s willing to prescribe vanco, so I’m still buying it from the US. Latest time I tried to get a prescription for vanco in Sweden I was told that I was “too healthy” to experiment with vanco (which is kind of ironic since they at the same time claim that vanco doesn’t work)… 
Also, I’ve been managing to stay safe even though I’ve taken 10+ flights this year to bring my vanco home.
/ Andreas
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Andreas,
I’m glad to hear that you have had such a success with Vanco. I wish you many more years of stable improved health.
Mark
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Thanks a lot Mark! I wish the same for you. 
10+ flights, wow. I get it, though. I told each of my specialists who I asked for it (hepa, hema, endo, gastro, blah blah) that I WILL get this drug, or I WILL make it myself if necessary ( I sent one a screenshot from ‘Breaking Bad’ and told em it was me refining my process just in case). I have learned from you and others here, the European situation, also the humbling rarity of my good fortune (script, access, and insurance). For you and for all the others on your whole continent (!) is there no other option? I’m sure you’ve explored them; mail order, courier, get a drug mule, get bulk, a favour, some humanity, maybe use of Euro-local compounding pharmacies, US military base pharmacy, get script filled in CH or in UK? Certainly difficult if there are no such alternatives .
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I’m sorry to hear that you haven’t had any success yet with getting vanco! It’s crazy that it’s so hard to get a medication that is very safe, has a potential to literally save lives and isn’t a controlled substance…
Yes, I’ve been on 13 flights to be precise haha… To be fair though, it’s only 2 trips but many layovers (due to less flights and last minute cancellations). Before covid, I could just fly to New York, arrive at noon and then take a 12 PM flight home the same day.
I think that people in the US generally believe that a public health care system works similar to the US system, but it’s very different. In the US, the doctor’s “customer” is the patient. In Europe, it’s the government. Therefor, there isn’t any benefit for a doctor in Europe to go out of their way to help a patient. For example, the doctors that make the most here are the ones seeing the most patient (since they generally receive money based on number of patients). The “high rollers” among doctors here are the GPs seeing patients for 5 minutes, not the highly specialized surgeons. 
In my case, there’s literally no upside for a doctor to give me a vanco prescription, it’s just a bunch of downsides (prescribing antibiotics looks bad, it costs a lot of money, etc). If vanco was FDA approved however, I could legally force them to prescribe it to me.
Also, according to EU law, the only way to import prescription drugs are by literally carrying it yourself over the border (in a limited amount). That’s why it unfortunately can’t be sent through mail. However, for me it’s not a very big hassle to take some short trips to the US. The costs are the worst part for me… 
Hi Andreas,
Thanks for the reply. Actually I do get Vanco - I had my difficulties getting a Doctor to step up to it, but one did eventually and I’ve been on it since 2015 and I was immediately normalized for LFT’s and still am. I had very nacent recurrent PSC (transplant in 2012), so no long term effect on my transplant, it seems to have ‘healed’ . Indicating early use of Vanco in PSC is beneficial. Of course there is always the possibility I was misdiagnosed with rPSC or some other explanation - but I think the cause and effect is clear.
In the reply that I sent I was just shot gunning a few ideas/thoughts on some other alternative way for you, that I am sure you have explored. Forced to take the route like yours with that amount of travel is really unfortunate and I guess one of the many issues with Orphan treatments.
You obviously do your homework on this stuff, you might have seen the following, but I ran across it some time ago and remembered it now - I’ll attach it, its another European experience with obtaining Vanco for PSC. Maybe something helpful in it.
https://www.youtube.com/watch?v=so2mmYbgMgE
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That’s great to hear! I’m glad that you finally managed to get a prescription! 
Thanks for the support! Maybe the best option is to just befriend a doctor that I can convince to give me vanco! 
Wondering how long it took you to normalize LFTs on Vanco? My 5 year old son has been on vanco about 4.5 months, making huge improvements from initial diagnosis (ALP normal, but has ticked up a little lately, AST normal and remaining flat over last 2-3 months, ALT has ticked up slightly over last month–just above normal, and GGT, while down significantly from nearly 500 at diagnosis has been flat the last 2 tests taken monthly at 80 and 79 so still approximately 3-4x normal from 20x normal at diagnosis). He is doing great, but we were hoping all tests would be within normal range at this point. Thanks!
Hi! It took me 2 months for my LFTs to normalize, but it looks like I had 5 times lower LFTs from the beginning compared to your son (so keep that in mind). I’m by no means an expert in this field, so I can’t really comment his numbers, but maybe they’ll eventually lower or the dose is too low?
Although my personal experience isn’t a useful comparison for a few reasons, I recall reading some accounts/data out there (maybe on this forum or in a couple of the dozen or so publications in the literature) that the LFTs can continue down for a long time, even years. I did a quick look up of this one https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5061664/ in Figure 1, the Vanco causes a sharp drop in first few months as the effect of the ‘attack’ on the liver is relieved by whatever mechanism and as a result it stops ‘screaming’ LFT’s, and then the LFT complaints calm down more over years as the liver heals. And maybe stops somewhere if the individual case has permanent damage. In Figure 1 here, you can see LFTs dropping for over 3 years. Hey as a parent I want to say it is such good news that he is doing well, best of luck. My advise is google search and read everything on this if you haven’t already - knowledge is power.
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a link with someone else’s experience wrt time for Vanco to work; in case you might not have seen this…
https://forum.livingwithpsc.org/t/vancomycin-improves-fibroscan-score/4396/5?u=rjm
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Thanks!
no probs, I expected it might also be of interest to STLBluejay in the question above - trying to gather experience in how long Vanco can take to show results. From the few posters on this forum that I’ve read, it seems that there can be a range of intervals before improvements show up - sometimes needing to switch brands to get there.
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Thanks for the information! My son continues to do great. We will be getting blood tests again later this month (which will be about 6.5 months) and I will report back.
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