I’m a 21 year old male from Sweden. I’ve had Crohn’s since I was 15 years old, and therefor take annual blood test. Two months ago, my LFTs were slightly elevated, which called for a MRCP. I got the results from the MRCP last month, which turned out to show a very early stage PSC.
I’m not a guy that sticks my head in the sand, so naturally I have done my research and I am aware of how well oral vancomycin have helped people for the last 25 years. It was here the problems started. With problems I don’t mean medical problems, I am totally asymptomatic. I am referring to the problem with the terrible health care system we have in Sweden. Besides the super long waiting times for health care, we don’t have the right to choose our doctor, so I’m stuck with a doctor that has the “wait and see”-approach to PSC. My doctor goes 100% by the book and isn’t willing to try oral vancomycin out. There is also a lack of private hepatologist, in fact I haven’t found a single one in my country.
I am willing to travel anywhere in the world to get my hands on vancomycin, but there is a catch. Since I live in a country with public health care, I don’t have a health insurance. Initially I was thinking about travelling to the US, but I’m probably not going to afford taking test. I looked at Mayo Clinic’s website, and they say they e.g. charge 20k for a regular liver biopsy… Therefor my second plan is to travel to Mexico or South America, were it probably is easier to get my hands on vancomycin. But that also creates problem, how I am going to get the meds home to Sweden without getting caught? Even if I get a prescription, customs won’t react positively to the iv powder since it probably looks like drugs (I can’t afford the pills).
Do you have any tips for me on how to obtain vancomycin?
I recall discussion on this forum by some European members (Ireland etc) who were able to get it. It may be tough if you are stuck with one doctor. Maybe private GI (gastro) doctor is easier to find (does not have to be hep doc necessarily)
I think Finland has also advanced PSC stuff in this area (Helsinki) and close to you. Also Norway is well known PSC expertise center.
Andreas, do you have copies of your test results (blood tests and imaging used to diagnose PSC)? You are seeking a second opinion regarding treatment so there should be no need to redo diagnostic tests. I’m aware of a few people from the UK that travel to the US for exactly this purpose.
I would reach out to the offices of doctors that treat adults who have been involved in OV research and explain your situation. Step 2 is to figure out the logistics of filling a US prescription in your country or getting the medication shipped. Cutis Pharma offers mail order liquid kits that should not break the bank.
Yes I do! That sounds like a great idea, since I can afford the meds, but not any super expensive tests! I’m definitely going to pursue that option, since the “wait and see”-approach isn’t going to help anyone. I’m aware of dr. Lindor at Mayo Clinic Arizona, do you have any tips on other doctors?
Hi Andreas. We could not find any doctor in Ireland to prescribe Vanco for our daughter (PSC+UC). We found a doctor (hepatologist) in my birth country who prescribed it for her for 3 years. The ‘glitch’ was the fact that, in my birth country (and France for example where my sister lives) Vanco can only be ordered by hospitals or private clinics. The hepatologist has a private clinic, so Vanco was delivered directly to his clinic, and from there it was sent by courier to Ireland. Now, when the doctors in Ireland have seen that my daughter is doing well on Vanco ( with no clinical symptoms of both PSC and UC) and her PSC did not progress for the past 4 years, with the last Fibroscan test showing no fibrosis , they started to prescribe Vanco, which we can buy directly in Ireland from the local pharmacy using the Dr’s Rx. However, when my daughter was on the Vanco brand available in Ireland (Demo) her LFTs started to increase progressively. We then reversed to the brand available in my birth country (Kabi), and her LFTs came down again to normal levels. If you want more info please send me a private message. Best of luck. Daniela PS. I’m really sorry, our Dr. from my birth country told us that he only treats my daughter, as he was impressed by our story.
Thank you very much for the insight! This whole part looking for vancomycin is really frustrating. It is especially frustrating since brand name oral vancomycin pills (Vancocin) is unbelievably actually covered by the public health care system in Sweden, and would only cost me $20 a month if I found someone who would prescribe it for me…
Right now my best bet is probably to travel to the US, which I am planning to do.
One time visit to US does not solve the problem (of getting monthly vanco supplies forever). Before planning US visit (to obtain official “second opinion” and Vanco recommendation which could be hopefully utilized closer to Sweden), it makes sense to talk to local GIs and other doctors closer to you, in case you find a willing doctor. Based on quick search, there are private practice GI doctors in Sweden (mainly specializing ulcerative colitis etc) but maybe open enough for Vanco too.
Karolinska Institute doctors may also give advice for Vanco (since they run PSC Vanco trial recently). Contacting PSC research teams in Helsinki (dr Farkkila etc) or Oslo (dr Karlson etc) sounds also worth the trouble.
Yes, that is true. The only problem is that you need to wait months to see specialized doctors here in Sweden. Right now I am seeing a doctor at the Karolinska hospital, but he right out refused to prescribe me anything.
I wan’t to start vanco asap, and I don’t think that it would happen in Sweden for me unfortunately. My plan is to find somewhere (probably in the US), where I can start getting vanco and travel there frequently (it is legal to take 90 days supply of mediciation on the airplane ride home to my country). After finding someone who is willing to prescribe vanco, I can start looking for better alternatives.
The Stanford Liver Clinic in Palo Alto, CA may be able to prescribe you Vanco. I was able to get a prescription for the generic Oral Vancomycin HCL from there for my partner (PSC no IBD). They also have a new clinical trial starting soon for a different drug.
It seems Dr. Cox is no longer the primary contact there, ask for Dr. Aparna Goehl
If you cannot get it covered in your country, probably the best option is to buy your vanco in Denmark. They will dispense prescription from any physician or dentist in the EU/EEA (https://laegemiddelstyrelsen.dk/en/pharmacies/prescriptions-from-another-country/), get the fresenius-kabi and it is ca 13 Eur per g, which is relatively inexpensive there compared to vancos in other european states. There are prescribing physicians in Europe.
No, I havn’t yet been able to find a doctor that’s willing to prescribe me vancomycin. For me, buying vanco isn’t a problem. The problem is finding a doctor willing to prescribe it. I’m going to the Mayo Clinic in Phoenix in 2 weeks, and I’m hoping to get a prescription.
Do you know of any doctor in Europe who prescribes vancomycin to PSC-patients?
There are many ways to get a prescription. You can try to convince your physician yourself, that is what I have always done. I sent you other ideas in PM. I know a prescribing physician in London who prescribes it in refractory cases, whatever that means in PSC. If your MD does not want to prescribe it she prob would want to supervise it if anything, would you travel to London?
I have tried convincing my doctor, but that didn’t help. There is also a Facebook-group for PSC-patients in Sweden, and no one seem to have gotten a vanco-prescription in my country. I believe that the doctors here are too scared of prescribing vancomycin after all the anti-antibiotics campaigns. In retrospect, I should have become an MD so that I could prescribe it to myself…
I always appreciate suggestions of doctors who might be willing to prescribe vanco. I am willing to travel anywhere in the world.
I just wanted to give a quick follow-up. I’ve visited the Mayo Clinic in AZ this week and I’ve finally been able to obtain vancomycin! It was a great experience and everyone there seems very service minded. The hepatologist I met was very keen on treating PSC with urso, but he was totally fine with prescribing vancomycin to me since I didn’t believe in the urso-treatment.
My doctor goes 100% by the book and isn’t willing to try oral vancomycin out. There is also a lack of private hepatologist, in fact I haven’t found a single one in my country.
Therefor my second plan is to travel to Mexico or South America, were it probably is easier to get my hands on vancomycin. But that also creates problem, how I am going to get the meds home to Sweden without getting caught? Even if I get a prescription, customs won’t react positively to the iv powder since it probably looks like drugs (I can’t afford the pills).
My plan is to find somewhere (probably in the US), where I can start getting vanco and travel there frequently (it is legal to take 90 days supply of mediciation on the airplane ride home to my country). After finding someone who is willing to prescribe vanco, I can start looking for better alternatives.
It was a great experience and everyone there seems very service minded. The hepatologist I met was very keen on treating PSC with urso, but he was totally fine with prescribing vancomycin to me since I didn’t believe in the urso-treatment.