I’ve been a long time lurker as my girlfriend (27) was diagnosed with PSC in early 2020. She has had UC for the past 6-7 years and when her liver numbers started to go up last fall, her doctors in Norway diagnosed her with PSC. She has had no real guidance from the doctors other than saying she needs to come in for quarterly blood tests and annual MRI checks to keep an eye on the progress of the disease. She is currently on Stelara for her UC, which helps but didn’t put her into remission. Her main symptoms from the PSC are fatigue and nausea.
When I have found this community, it gave me so much hope as I saw many of you treated and reversed the progression of PSC by oral vancomycin therapy. Therefore, we went back to her doctors and asked if she could try oral vanco for at least 2-3 months as a trial to see how she responds. We got the same response as many others here and were told that they cannot prescribe her an antibiotic as a long term therapy. Although she was convinced to give vanco a try for both her PSC and UC, after speaking to the Norwegian doctors, she got worried about the resistance risks of using vanco long-term. She wants to understand the therapy and the risks associated with it from a doctor who has treated patients with vanco. I’ve reached out to some of the doctors I have found here including Dr. Brett Fortune, Dr. Cox, and the Hepatology department of Mayo Clinic in Rochester. However, their offices got back saying they are not allowed to do teleconferences due to liability issues and we are unable to go to the US given the pandemic situation at the moment.
Are there any doctors in Europe who are familiar with this therapy for PSC that anyone of you can recommend to us?
Just as a side note - I live in Canada and would also appreciate it if anyone can recommend a doctor from here as well.
There are certainly challenges to getting a script for Vanco, and maybe some legit concerns from the medical community about its wide and chronic use (concerns that might ultimately be allayed by more supporting supporting evidence to current observations of no VRE risk while in long term PSC application, availability of antibiotic alternatives for CDiff, and reduction in its cost - cost being a big demotivator to prescribing it seems). Keep at it though. It appears that use early in the course of PSC may be best, so it sounds like you are starting search at a good time, and the travel restrictions won’t last forever. If hospital Dr.s won’t prescribe, ask them to ‘at least’ support her in clinical trials held elsewhere (i.e contribute the tests, scans etc.) and then search them out online - PSC is rare enough that US trials will take internationals if they are paying there own way. The only other advise I have is shop around general practitioners (family doctors) which is not easy to do of course because they are rare and have to agree to see you - but the point is they are not subject to hospital administration ‘policy’ about Vanco or antibiotic prescription (but is still a risk to them professionally, so go in armed with the science). good luck
Honestly, I think it will be super much easier getting vanco in the US. I’m from Sweden and have been to many doctors and no one is willing to prescribe it. Some are even telling me that they wouldn’t prescribe it even if it was guaranteed to stop PSC!! I don’t know how the Norwegian system works, but here in Sweden it’s “worse” for doctor to prescribe antibiotics compared to hard core controlled substances… Also, it actually costs the doctors to prescribe medication (they get one budget which is supposed to cover salaries, fixed costs, tests, medication etc). In the US, doctors have an incentive to actually help you and not just follow standard protocol. Therefor, I go to Mayo clinic for my vanco.
A good thing to keep in mind that PSC progresses relatively slowly over many years. I think that things will resume to normal within a couple of months (I don’t believe there will be a lockdown for years). So most likely she wont suffer if she just chooses to wait until corona is over.
So sorry to hear about your girlfriend’s diagnosis. I live in the US and have been doing extremely well on vanco since January 2018. I’m a huge advocate for vanco for PSC and it makes me so sad that many doctor’s won’t prescribe it, even though it’s saved many people’s lives.
I encourage you and your girlfriend to not give up on trying to find a doctor who will prescribe it. It’s an uphill battle, but so worth it. Over the past few years on vanco, I’ve had no PSC disease progression and normal liver numbers. Unfortunately I don’t know any doctors who prescribe it in Europe or Canada (though I recently heard that doctors in Australia are starting to prescribe it for their PSC patients).
I just wanted to tell you to not give up, keep calling doctors, and searching around. I hope one day, it’s simple for patients to get the medication they deserve. Thinking of you two!
Thank you so much for your wonderfully thorough messages guys. Really appreciate this community and your support.
I completely understand the uphill battle with the doctors for the prescription and there is no way I’m going to quit until we get her on Vanco. It’s interesting because I’m from Turkey and I can get the Vanco prescription in the blink of an eye through doctor friends of mine. It comes in 1000mg of IV bottles in Turkey and liability for doctors is less of a concern there than the rest of the Western countries. This being said, I’m having a hard time convincing my girlfriend to start the treatment as she wants to speak to a doctor, who treated PSC patients with Vanco in the past. So far, she has been able to get no guidance other than the studies and posts we have read online.
Therefore, I have been calling some of the doctors I found here, who are based in the US, to set up teleconferences so she can get more comfortable with the idea of starting Vanco. So far I have tried Dr. Brett Fortune (whose office said we need to come to the US for them to be able to do a teleconference?!) and Mayo Clinic in Rochester, who gave us an appointment for the end of November. Could you guys recommend any other doctors we can reach out to in the US or Australia?
Thank you once again for your support and I hope all of you are doing well during these challenging times!
There may be legal (liability) issues that prevent US doctors having teleconference with a foreigner abroad. This could be maybe considered “practicing medicine in Turkey”.
US doctors are fine as long they are giving medical advice in the US (or existing patient traveling abroad etc).
You are lucky if you have access to Vanco.
I would simply gather some articles and research papers about Vanco success and proceed with those.
First of all, good on you for what your doing for your girlfriend, every PSC’er needs an advocate, someone in their corner – its how I survived in fact. I had PSC, transplant, rPSC, and now completely normal (no evidence of PSC) due – I strongly believe – to Vancomycin (reduced to 750 mg/day of the IV stuff taken orally). Along my journey I have accumulated some bits and bobs that might speed your research. First, a preceding point from Ted about reading the papers (about a dozen or so) and even reaching out to each author is a plan. Second, I mentioned inquiring to US based clinical trials. Remember that inquiring about participating is (in part) doing them a favor, but just from the inquiries you will gain the live-person-expert information your looking for (like your girlfriends concern on VRE). I just looked up this one and it actually has phone numbers (of study coordinators, not necessarily DRs, but still full of advise). https://www.mayo.edu/research/clinical-trials/cls-20436937. I know they take internationals, I also know (as a non-US citizen and international myself) I have corresponded directly with two big hitter PSC doctors in US by email and phone (very briefly but they actually will do that). Third, In talking with any Doctor on the subject, although all questions are good questions, remember that supporting or prescribing Vanco is off label and is a risk even to those in the big US research clinics who study it on PSC – so best the inquirer be fully researched and committed to getting Vanco come hell or high water. What I’m saying is its one thing for a Doctor to prescribe or recommend Vanco to someone who is committed, another place on that DRs risk spectrum to have to first talk you into it. Third, if you haven’t seen this already, take an hour and have a listen to the guru on this that JTB found and posted – VRE concern addresses by him in short answer during Q and A at about 49 minutes in (but the full hour is sure enlightening!). Stanford Vancomycin trial phase3 results available. Fifth, there is this group whose mandate seems to be to advocate for Vanco (given its biases against and orphan challenges). http://childrenspsc.org/resources. There are a few folks named there (Doctors and parents) who might be willing to point you in a direction. And I just noticed on that site there is this quote from a PSC Dr Q@A… A: Q: Have there been any cases of resistant bacteria due to the long-term use of vancomycin? “To date, nothing has been reported with oral vancomycin and VRE. VRE has been reported with IV vancomycin, but not in oral vancomycin. And we do check in with ViroPharma to whom everything gets reported. I know that becomes a big concern and a big scare for people. I’ve heard it in conferences when I’ve presented. However, since there hasn’t been a case of VRE with oral vancomycin yet, we believe the risks are probably small for developing VRE with this form of the drug. Can we guarantee that somebody won’t get VRE? Absolutely not, and we do put the risk of VRE in our consent forms. If we did start seeing cases of VRE with oral vancomycin, it would probably be a big deal in a larger sense because vancomycin is used to treat C. diff. I’m hoping to get more information from the studies that we’re doing on gut flora. I think the data coming out will guide us, and tell us more about what vancomycin is doing.” So, there y’ar, have at it. Good health isn’t always easy buts it worth it.
Ted - I’ve done exactly what you advised and although she is completely on board for the battle to get started on the Vanco treatment, she still wanted to ask a specialized doctor, who knows and prescribes the treatment, her own questions and get answers directly. We are making plans to go to the US to see Dr. Brett Fortune in NY or Mayo in Rochester.
RJM - I can’t thank you enough for this summary. Reading your post definitely helped her understand the treatment better and have more faith and hope in it. The podcast is excellent too. Now our focus is to do whatever it takes to get her started quickly. Will keep you posted.
