Has anyone experienced any success with oral vanco on adults? or have you heard anything about oral vanco with early stage psc in adults?i really like to know if it could help my mom or not.any answers would be appreciated.Thanks in advance! 
Please keep my mom in your prayers!!!
Mayo clinic did a short double blind study on adults with a lower dose than Stanford gives the kids. It showed improvement. This may help with your question. http://www.hindawi.com/journals/bmri/2013/389537/
i am interested in knowing more about the use of oral vancomycin ? did anyone used it and how are its effects ?
if this is safe ? can i take it instead of the current medicine usro ?
There are dozens of discussions about this topic on this board.
Vanco seems safe and it seems to work for many (ie. >50%) psc patients.
Main disadvantages seem to be price (depending on your insurance), whitening of teeth and the fact that it is still not official FDA approved treatment for psc (ie most doctors dont know about it and are hesitant to prescribe it to you).
It has been used 20 years for psc (by few doctors) and it is in last (phase 3) phase of clinical trial. Hopefully in two years it is officially approved and hence more easily available.
If you want it now, you could try to get into clinical trial (Stanford university) or find a doctor willing to prescribe it to you.
Urso seems not to offer any statistically significant improvement for survival. Vanco seems to do that.
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Elina -
I posted earlier with some Vanco studies provided by Standford. These were given to me in the hopes that our doctor would perscribe Vanco based upon the information in the studies. The appointment is coming up, but, hopefully you can use those studies for your own endeavors.
GOOD LUCK!
I noticed some Oral Vancomycin updates.
"Patients With Early-Stage Primary Sclerosing Cholangitis Most Likely to Benefit From Antibiotic Treatment: Presented at DDW
SAN DIEGO ā May 19, 2016 ā This first ever report of long-term outcomes of oral antibiotic treatment in adults with primary sclerosing cholangitis (PSC) found that patients with early-stage PSC are most likely to benefit from the therapy, researchers reported here at Digestive Disease Week (DDW) 2016.
For the current study, Dr. Tabibian and colleagues sought to examine the long-term outcomes of patients who experienced improvements in alkaline phosphatase while receiving oral vancomycin or metronidazole."
http://www.firstwordpharma.com/node/1385083
I have to talk to my doctors about thisā¦I have been hesitant starting it yet, but maybe it is worth getting started already (even if no symptoms). So far my docs (who are familiar with the vanco clinical trials) advised maybe better wait since we wouldnāt know if it works (since my LFTs are more or less normal already).
Also, Iām using probiotics for my UC, so not sure if vanco affects that.
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Hey folks. Iām 50. My hepatologist just prescribed Oral Vanco today. My enzymes have been climbing steadily since about 2010, but to date I havenāt had any serious problems (bilirubin has been normal etc.). I wish there was a more definitive boy of research to support this action, but I feel like I need to act now before cirrhosis sets in. Wish me luck. Iāll report back in a month, which is the next time I have lab work.
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Good luck, kayakdave - I hope it works out for you. Track down the Ani pharma pills if you can.
As promised, I am reporting back after 1 month on OVM. ALP is down about 30%. This is consistent with some of the phase II trial results I have seen, But, it is based on just one data point so I really canāt take it to mean anything at all at this point. Will proceed several more months and see what happens. By the way, it was no problem finding the ANI Pharma capsules.
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Great to hear - the numbers are heading in the right direction. Thanks for the update,
Kayakdave great to hear your numbers are better. Do you mind sharing your dosage levels? Good luck friend.
Thanks. Djamato, my dose is 125 mg 4x/day (so a total of 500 mg).
I just spoke to the staff for Dr. Davies in Sacramento, CA. They are conducting clinical trials for adults, up to age 40. They will even work with Dr.'s who are unwilling to consider Vanco for adult treatment. Contact: 916-ā ā ā ā ā ā ā ā , Leta Faller.
Is Vanco not considered effective with adults? My 21 y/o son was diagnosed with Crohns and PSC in December. Elevated enzymes and an MRI that showed bile duct inflammation, but bilerubin and albumin levels are normal and he has had no symptoms for both conditions.
Connected with a heptologist/gastro/liver transplant doctor in NYC who is very open to putting my son on Vanco or placing him in a clinical trial that will be taking place in NYC for another drug (not yet ready to accept patients). I donāt want to put my son on Vanco if it has not demonstrated any value for adults.
Also, is Vanco available in liquid form? My son has NEVER been able to swallow a pill.
Oral vanco treatment works great for many adults based on anecdotes on this and other sites, as well as in clinical trials.
Adult trials:
http://www.jgld.ro/wp/archive/y2016/n4/a7
Adult case studies:
https://www.researchgate.net/publication/283330781_Oral_Vancomycin_Effect_in_Primary_Sclerosing_Cholangitis
http://digitalcommons.calpoly.edu/cgi/viewcontent.cgi?article=1016&context=symposium
Vanco is available in liquid form. IV vancomycin powder can be compounded by a compounding pharmacy so that it can be taken orally as a liquid. A lot of people go this route to save money or to ensure they are getting a quality product, as there is a lot of variation in the quality of the generic oral vancomycin pills. Downsides are that you need to be creative when carrying around individual doses and that it can have a negative impact on teeth - plan on visiting the dentist twice as often to clean up the extra plaque.
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Update #2 on my experience with Vanco: After 3 months & monthly labs, my hepatologist now recommends that we discontinue it. Initially my enzyme levels decreased, but have since rebounded. So, back to square 1 for me. The good news is that a recent annual MRI indicates no change in status of liver (still āmildā biliary impacts) & the other labs results continue to be normal. I should stress here that my response to OVM (or lack thereof) should be taken in context ā just one person. Trials to date have shown that a significant number of participants do respond, so please donāt rule it out based on my experience. Itās probably a factor of the diversity in causes of PSC ā so much is poorly understood. I am glad I tried OVM. I feel like I am being proactive rather than waiting for things to get bad. I had no discernable side effects, so I really donāt see a down side for having tried it. I will continue to follow the research of this drug and others.
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Sorry to hear it didnāt work out kayakdave.
Iāve been on oral vanco for close to four years now and just got back encouraging MRCP results: āNo evidence of biliary obstruction or primary sclerosing cholangitis on current MRI.ā It appears that some adults, in addition to pediatrics, may be able to reverse bile duct strictures.
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jtb,
is this the 1st time a follow up has shown āimprovementā in your condition? Have you been stable (enyzme levels/symptoms) the entire time you have been on VaNCO?
Yes, this is the first MRCP that has shown improvement. Previous imaging while on vanco was stable with no improvement or progression. Aside from my first six months of treatment that involved experimenting with various brands and cycling off treatment at one point to see what would happen (I got sick), Iāve since had consistently normal LFTs and been asymptomatic while on vanco.
I glad you are doing well. My 22 year old son was diagnosed with PSC and Crohnās, although he has always been asymptomatic for both. I was hoping to start him on Vanco (his heptologist is happy to prescribe and monitor), but he wants to do a liver biopsy first to rule out AIH because my sonās enzyme levels are higher than normally seen with PSC. We should get that done in May and then hopefully be cleared for vanco