I’ve been reading with interest for the last few years about the trials with Vancomycin for PSC in adults but I find myself in the frustrating position of being in the UK where:
The NHS won’t provide Vanco for PSC because there isn’t enough evidence.
There aren’t any plans to have clinical trials either.
I don’t even know of any prescribing private physicians
Has anyone from the UK / Europe successfully got a prescription for Vanco?
I’m 35 years old. It seems such a waste to watch my health gradually slip away when people in other countries are being treated and having their condition stablise/improve.
May I ask if you have UC or crohns? I have PSC but no chroma or UC and my heptologist (from Mount Sinai in NY) tells me I would not benefit from Vanco. Curious if it’s a case by case or just not effective for non-UC PSC patients.
I also have UC that has mercifully been pretty quiet most of the time I have had it.
I can’t comment on whether Vanco would be effective for you. I believe that most of the studies have taken place on patients with UC but then again, around 85% of people with PSC have UC so it doesn’t mean that it wouldn’t work. I’m not sure.
My consultant has suggested to me that one of the reasons that treating PSC is so difficult is that it probably isn’t one disease, more like a collection of symptoms. There seems to be lots of sub-groups (UC vs Non-UC / Paediatric vs Adult/ PSC/AIH vs PSC only).
I get my vanco in the US.
Any doctor in Europe can legally prescribe vanco off-label (even NHS). This is simply just an issue of convincing a doctor to prescribe it to you. To be quite frank, this requires persistence and fierce argumentation, since most doctors (even so called PSC specialists) don’t know anything about the vanco treatment.
There are multiple different approaches you could take:
Literally keep visiting hepatologist untill someone reluctantly prescribes it to you. The best bet in this case is to bring one or multiple family members/friends that are good at argumenting and never give up the argument.
Go to the US and get a prescription from one of the pro-vanco doctors, and bring vanco home. This is the easiest option, but also the most expensive option. On the other hand, if your LFTs normalize, you might use this as an argument when visiting yoru local doctors.
Visit some less developed country and try to find a doctor willing to prescribe anything.
I live in the United States and I begged and cried to four doctors who said no to prescribing oral vanco for my daughter (all had random excuses…it would build resistance…not true, it’s not approved for PSC, it’s too early etc) so I asked on this site if anyone had a doctor who was willing and finally was given a name. Seems there are only about 8 doctors in the US that are willing. It’s been a miracle for my daughter (who doesn’t have symptoms of UC although after tests, seems to have had very mild inflammation on one side). Maybe post in UK support sites to see if anyone has a doctor that’s willing. Or beg your doctor to at least do a six week trial (or even three weeks might show a reduction in LFTs). And try to get ANI brand. It seems to preform the best. Vanco has allowed my daughters liver to go from transitioning to cirrhosis to normal. It’s defiantly worth a shot. It certainly couldn’t hurt. Good luck!
Most of the past research is limited to PSC/IBD patients to help homogenize the group. The current Mayo trial actually bucks this trend and will include patients without IBD. This doesn’t mean that vanco doesn’t work for those patients with IBD, it just means that there is less data on this population. Anecdotally, it appears to work as well for no-IBD patients compared to those with IBD. There are a few on this forum without IBD that have completely normalized on the treatment, me included.
I will add this below from Dr.James Tabibian from a Q&A session last year at a conference. “People who think they have PSC alone, also have IBD which is very quiet or don’t have the tools to detect at those levels.”
When our GI did endo/colonoscopy, right after the procedure she told us there is no inflammation at all and 100% perfectly fine. But let’s just wait for biopsy and sure enough it came back as active colitis even though he has 0 symptoms for UC/IBD.
I can recommend a NYC doctor who has prescribed Vanco. My son also has Crohns, although he has never had symptoms. Its worth trying Vanco even with no UC.
I’m in NY also. My Dr coincidentally, is also affiliated with Mt Sinai. She also won’t prescribe vancomycin. If you’d be so kind as to make your recommendation I’d be grateful.
Thanks so much. Be well,
Brett Fortune, MD | Weill Cornell Medicine
Brett Fortune, MD | Weill Cornell Medicine
He’s a great guy