Hi everyone,
I am currently going through the screening process for the Stanford clinical trial re: Vancomycin. I hope to be selected.
For people who are currently using Vanco, what has your experience been? Was it hard to get the prescription? How much do you pay per month? What has the effect been on your liver and your daily life? Differences in generics? IV vs. oral? Any information would be great.
I am so thankful for this forum and hope everyone is doing well.
Becky
I just heard back from Stanford that they are closing the study early and will be publishing the information soon. I am not sure what this means. They may also start a prospective double blinded study in the near future. I will update if I receive more information.
Becky - thanks for the latest on the study. It was originally going to end back around the turn of the year, then they extended it for another year. Now it's ending early. Not sure what's going on. Perhaps they were looking to close out a few additional patients that were being treated beyond the original study end date?
The hardest part about the oral Vancomycin treatment is getting a doctor on board. Know the drug, the theory behind why it works, and the established protocols backwards and forwards, then be prepared to present the case to the doctor. Bring copies of all of the published studies.
Cost is between $3000-9000 a month for 1500mg/day for the capsules. Most insurance plans have no obligation to pay for non-fda approved treatments. If your insurance balks, IV Vancomycin (taken orally) is an option and ranges from $200-700 a month for 1500mg/day. A compounding pharmacy can suspend the IV powder into liquid form for easier consumption or the IV powder can be dispensed directly (you would need to do the compounding work yourself). IV Vancomycin has been on shortage since Fall 2014 which may lead to some supply issues. Prices may have gone up because of the shortage (mine went up from $100-$400 last month out of the blue). Certain prescription drug providers do not provide benefits for compounds. They may still cover either the capsules of IV Vanco dispensed directly.
A downside with the capsules (beyond the insane cost) is that most of the generics are garbage. In my case, 1500mg/day of a bad generic provided half the total benefits when compared to 800mg/day of a good generic. The Prasco generic and name brand Viropharma have been recommended by the Stanford doctors. The current thought is that IV generics have less of a quality issue but there isn't a lot of data on this point. My recommendation is that if a particular generic isn't completely normalizing LFTs or eliminating symptoms, change to a different generic to see if it helps.
Effects from the treatment include normal LFTs (~600 ALP to ~60) and elimination of all symptoms (previously recurring cholangitis attacks, itching, nausea, jaundice, fatigue, etc.). After a year my imaging revealed that the scarring has not improved but notably for the first time has not gotten any worse. Practically, it has given me my pre-PSC life back. The only side effect for me has been non-permanent teeth staining (IV Vanco issue).
JT,
Thanks for all of the information you have provided on this post and on other discussions. You (and others) have helped me get my head wrapped around how Vanco works. It looks as if I will be able to try Vancomycin as a treatment and if so, I will update with my experience later.
I realize this is not a treatment everyone is comfortable with trying. But what bothers me is that I am sure there are PSCers who might benefit from it or be interested in trying it yet they
1. do not feel comfortable educating their doctors
2. do not have the means to try different doctors
3. do not have the money to cover the treatment
4. do not even know about the research
I am hopeful that the latest trial from Stanford will show great results and other doctors will take notice. In the meantime, I wonder if an informational pamphlet or one-pager for educating doctors would be helpful to other PSCers?
I am new to this disease but not new to being an advocate for myself or my family. My diagnosis was by letter and it told me there is nothing they can do and to come back in a year. No mention of getting a Hep A and Hep B immunization. No mention of osteoporosis. No mention of diet and exercise. No mention of clinical trials. Ridiculous! I have learned more from this and other forums and researching the internet than I would have ever learned from my local doctor.
Thanks to everyone who shares information about this terrible disease.
Becky
Hi Becky,
My experience with Vancomycin has been stellar. At this point, I feel completely normal - as good as cured. My PSC is recurrant (two years post transplant) and I ain't going through that again. I take 1500 mg/day of IV powder - which just lately I took up transfering to rice paper (cigarette paper), ball up and swallow with water to avoid the teeth stains. My LFT has completely normalized (in the first month of the 4 I have been on, all puritus now distant memory. I agree, I think that many PSCer's would benifit from this who are not currently trying or able to access it. And yes, this web forum alone provides way more treatment information to us patients than any doctor (even a GI) has ever accumulated by the handful of PSC patients he/she has seen, and the formal literature he has read (if they have kept up). Too bad they don't read these forums, and factor in the inputs.
Cost and access are the big barriers to many and that is a shame. As has been advised, people have to go in to doctors well armed with facts, copies of the pubs (one dr said, " you don't expect me to read all these do you?"), change doctors if necessary, ask for a trial period to start, ask the Stanford doctors for an email supporting the efficacy of the treatment - do what they have to do to prevent progression of this disease (its a serious one after all).
Good luck
RJM
Thanks RJM. I'm glad to hear you are doing so well. The idea of using rice paper is great!
I heard from Stanford again and they are going to go ahead and include me in their clinical trial. Yay! I sent an email to the doctors asking to be included and I guess they felt bad about cutting me out while I was in the middle of being screened. I am just happy to be able to take part:)
They don't want people who are participating in the trial saying too much, but the doctor I spoke with hopes to have the information published by the end of the year. I am hopeful this will change people's lives.
Take care! I will try to update with my progress after the trial ends.
Becky
Great news Becky. When you are able, let us know how it goes for you.
This is by far the largest and most comprehensive Vanco trial to date and I hope that the results will help to raise awareness and acceptance for the treatment.
rjm
Are you still around?
Do you know which brand IV powder you were/are taking?