Hi Jam- our initial imaging (MRI) did not indicate that the ducts had narrowing. So we did not have real gap to close so to speak. In fact we had to send the MRI to the UK before anyone could actually see anything- 2 lower experts aw nothing. Which is why it was so very confusing in the beginning- We were not AIH (Biopsy was negative) and not exactly PSC either. The this was an overlap diagnosis.
Can people list the length of time they or their child have been on vancomycin and what the results have been? My daughter started at 4 years old (psc and uc), so far she has been on the drug for about 10.5 months to excellent results. I am especially interested in those who have been on the drug for multiple years. I think those patients will bring a lot of insight to newcomers to the drug or those thinking of starting and this positive news will help spread the news and alleviate some of the fear some people have.
Great idea, djamato.
Iām 34 now, with PSC only (no IBD) and Iāve been taking vanco a bit over 3 years. Pre-vanco, I had no cirrhosis but I had a lot of scarring in my ducts with frequent cholangitis infections and I was going through the process of being listed for transplant. On vanco, I have normal LFTs, am asymptomatic, and have had no episodes of cholangitis. My MRCP imaging has not improved while on vanco (the scar tissue remains). Notably, and for the first time, my imaging has not continued to get worse.
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Jtb: do you take vanco in the capsule (pill) form three times a day? What brand you are now taking (since brands seem to change all the times)
Earlier I went to see dr Shah at Stanford but she left, so Iām not sure if there is anybody other than dr Cox (pediatrician) focusing on that. My plan to was to get the dosage guidance from dr Shah but new plan neededā¦
I started at 500mg tid (1500/day) and now take 125mg qid (500mg/day). I started with Alvogen pills with mixed results, normalized on an IV Kabi compound, and remain normalized with Prasco then Ani pills. The Ani authorized generic is the go to pill these days.
Iād call or email Dr. Cox or Dr. Shah and see who they recommend for adults at Stanford. I think their current dosing protocol is to start at 500 tid and work up if you donāt normalize.
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Thanks JTB just to give you a little more info. My daughter started out with 250 mg tid (750mg/day) to excellence results, we reduced that to a maintenance dose of 125 mg tid (375 mg/day). My daughter only weighs about 38 pounds, hence the lower dosages. Since being on the vanco, she has gained about 9 pounds, almost 1 pound for each month on the drug. From my talks with others it seems it is best to start out with the max dose for your weight and than if it all goes well, you can reduce to the maintenance dose. Our first blood test on the maintenance dose showed the liver numbers holding steady. I took my daughter for another blood test today (itās been about 3 month now on the lower dose) so if those numbers are good, we should be able to stay on this maintenance dose. She has always used the Akorn vanco brand.
I really like reading as much information about the use of vanco as possible. Iāve asked my husbandās doctor about it a couple of times and he just doesnāt seem to have a clue. My only question is this- is this something that is started when ERCP is no longer an option? Thank you!
Lisa
Ideally one would start treatment at the time of diagnosis. While we do have cases where OV treatment has shown to reverse bile duct scarring, it is far more common for treatment to simply stop progression. OV treatment has been shown to be less effective for patients with cirrhosis. Additionally, the liver eventually reaches the point of no return where damage from cirrhosis outpaces the liverās ability to regenerate. At this point stopping bile duct inflammation will not stop the inevitability of needing a transplant. Starting sooner is better than starting later.
I think that if you have high LFTs, then it makes sense to start (you can see if it works and if not, take corrective action, e.g. switch brand).
If your blood tests are normal, then it is not so clear. One Stanford doc advised me to wait. His argument was that there is no way of knowing if it works for me. So currently my plan is to monitor my LFTs and MRI to see if any disease progress. If yes, then start Vanco asap.
Lisa, my advice is if there are symptoms and or high LFTs start vanco. Find a doctor in your area who is open to the idea, or try going out to Stanford and see one of the doctors there. I donāt know what the future holds for my daughter, but last year she was couch bound, and this year she is a happy little girl, going to kindergarten, who loves playing at the park and going to her gymnastics classes. I know there are no large major studies, but something wonderful happen when she started the vanco, we got our daughter back to her old happy self. Since we are a sample size of one here, I guess technically all we can say is that vanco use is correlated with her improvement, but for now that is good enough for me and my wife. Good luck to your husband and letās all keep sharing so we can build our own informal database of vanco use.
My sonās ov was reduced from 500mg 3x per day (1500mg)down to 500 2x per day (100mg). Another mrcp scheduled for early November. If that goes well my sonās vanco will be further reduced. Recent blood work done last week show that his liver numbers are all in normal rangeā¦he has been on ov since May '16
Great to hear. Hope the Mrcp also shows that no more PSC progress. Keep us updated. I plan to see Stanford vanco docs in few months to hear more about the phase 3 trial results if no public update soon (i think their current goal is to wrap up the phase 3 analysis by December).
I have been using vsl#3 probiotic (for UC) with great results and some doctors speculate that it might also help for PSC (Mayo Clinic is actually planning to run trial on that).
Interesting times and lots of hope for breakthrough for PSC in addition to Oral Vanco (e.g. Norudca plan 3 trial maybe starting soon and lots of phase 2 trials ending within a year or two)
Stanford Vancomycin phase 3 trial has been extended again. Latest update is that it will be completed next summer. Frustrating, but I understand that these things take time and they have limited staff and resources (e.g. main investigator left Stanford).
Here is new research paper on Vanco (further confirmation about use of Vanco):
"Oral Vancomycin Therapy in a Child with Primary Sclerosing Cholangitis and Severe Ulcerative Colitis."
Buness, Lindor, Miloh.
Pediatr Gastroenterol Hepatol Nutr. 2016 Sep;19(3):210-213. Epub 2016 Sep 29.
"Abstract
Primary sclerosing cholangitis (PSC), a rare progressive liver disease characterized by cholestasis and bile duct fibrosis, has no accepted, effective therapy known to delay or arrest its progression. We report a 15 year old female patient diagnosed with PSC and moderate chronic active ulcerative colitis (UC) who achieved normalization of her liver enzymes and bile ducts, and resolution of her UC symptoms with colonic mucosal healing, after treatment with a single drug therapy of the antibiotic oral vancomycin. We postulate that the oral vancomycin may be acting both as an antibiotic by altering the intestinal microbiome and as an immunomodulator. Oral vancomycin may be a promising treatment for PSC that needs to be further studied in randomized trials."
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Thanks for the updates, Ted. The Lindor group is seeking grant funding to conduct a longer term trial comparing the use of oral vancomycin vs urso for pediatrics.
Hello everyone,
Just want to update everyone as my son had a 3rd mrcp on Monday and ask a question or 2.
We recād a faxed report from the radiologist which showed slight progession of psc. The report also indicated that sludge found in āunder distendedā gallbladder.
Iām waiting to hear from hepatologist to explain the report.
Just some backgroundā¦my 14 yr old son was diagnosed with uc and psc March 2016. Started oral vanco in May of 2016. Second mrcp (August 2016) indicated less narrowing of common bile duct and oral vanco was reduced from 1500mg down to 1000mg. Hepatologist wishes to cycle my son off of oral vanco but now I donāt know if thatās possible. My son turned 15 last week.
Can anyone explain what is an āunder distendedā gall bladder ? And how to get rid of the sludge in the gallbladder?
Also- anyone know whatās going on with the 3rd trial of nor-urso ??
Thank youā¦julie
I am a caretaker of my wife(48 years old) who has PSC and UC disease for 20 years. We have been looking for OV trial program without success because of the location we live (Los Angeles) and age. Does anyone know doctor who is familiar with OV medication to treat PSC disease in Los Angeles area? Any suggestion is appreciated.
Julie,
Did anyone ever respond to this post? Iām not seeing any replies and Iām sorry itās been 10 days now. Please let me know if you still need some answers to these questions and we will do our best to find out.
Mark
I recommend either calling or emailing Dr. Cox up at Stanford. He may have a good lead for a hep in the LA area or at the very least for an adult hep at Stanford who is on board.
In light of the MRCP results it would make sense to bump the OV dose back to 1500 to see what happens. Timed cycling on and off of vanco is a thing that has been attempted, but only once a patient is normal and stable. Dr. Cox is the one who has experimented with this cycling and would have the best recommendation regarding protocol. That said, the vast majority of OV users do not cycle their treatment.
Thank you Mark and jtbā¦my son will be seeing his hepatologist next week so heāll be able to interpret the mrcp report and additional blood tests. The dr has voiced concern over my 15 yr old son being on oral vanco āforeverā but weāll see what he says on Tuesday. In the meanwhile i am trying to make an appointment with Dr Cox. Will update after my son meets with hepatologist. Hope all is well with youā¦julie